Our Little Odyssey

Perfect Christmas gifts for Childrens with special needs..

2010-11-19T16:24:00.000-08:00

Ok, If you like to be called "special" then get the book "Someone Special Like Me." But if you don't like being called "special," then try the book "Don't Call Me Special." Matthew says he is special and you can call him special.. just don't call him late for supper.. yea, he said that.

Now for the parent of children with special needs I recommend the Child with Special Needs and More than a Mom. I have not read either but I have heard they are great books I would love to get one of these, or both for christmas.

This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to microcephaly, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research.

Chronic Kids, Constant Hope, You gotta read this book!

2010-11-16T17:03:00.000-08:00

A book that Matthew's nurse brought me. I am not much of a reader because I don't have that much time. If I do read, the book has to keep my attention from beginning to end and this one did. Here's just one of many of my favorite parts of the book.
"We know our Children's worthiness rests securely in God's plan for their lives. Children with disabilities can frequently accomplish more than able-bodied people because of their ability to reflect Christ in their differences." Hoekstra/Bradford

Chronic Kids, Constant Hope

New friends, new places to go, our new life!

2010-11-08T17:01:00.000-08:00

I have hundreds of photos that I have taken since we moved to Bristol, VA. We have made many new wonderful friends and met FB friends for the first time. Here are some pictures of me and Matthew's new friends.

New friends are Kristie and Billy Mason, Donna and Chase Addington. We also me Minnie Salyer and her son Spence

Part II You'll never Believe Where we are on our Journey.

2010-11-07T16:09:00.000-08:00

Yes, you saw correctly. Instead of Matthew getting approved for attendant care services through the EDCD waiver, he was approved for 10 hours a day, 7 days a week nursing care through the EPDST waiver. Right now he has an RN coming 5 days a week. This weekend, an LPN is coming to work every other weekend until they can find someone permanent for weekends... HE is also eligible for the attendant care services through the EDCD waiver but I have not found an attendant yet.
Not one, not two but THREE to help make Matthew's life the best that it can be!

It has been wonderful having help with Matthew and seems like a dream that I will be getting even more help this weekend. Then it was on to the next step.. finding a job so John can quit his and come be with his family.

I've only been really looking for a job for 3 weeks now. Right now Im working 19 hours a week at Aid & Assist as a personal care attendant and I really love it. It's just temporary until I find a full time, better paying job. I have had 2 interviews at a really good job in Abingdon and got a call back to interview with the owner this coming Thursday.. on the day of our anniversary.. so maybe that will be good news. I had another interview last week with Virginia Highland Community College.. Now that would be a WONDERFUL job with great state benefits, sick leave, retirement.. That's the one I REALLY want. I may know something about it by tomorrow.. or if I will get called back for a second interview. Because of the job market, people can afford to be pickier than they used too.. I have not had just one interview YET.. always at least 2.. But God knows which job I am suppose to have. I am qualified for them all but if I could do the job I do now, full time with benefits,and better pay, I would stay with it but that's not part of the overall plan.. maybe later.

I have the new place all fixed up.. it's a little smaller than what Im used too but it feels like home now. I have never felt any regrets about moving at all... I love living in the mountains I love the weather. Matthew and I were able to go, go, go, all summer! It was never too hot to go anywhere.. except when the a/c went out in my van during the move.. that's another story.

There have been rough spots all throughout the move but we kept on pushing and pushing and are still pushing ahead!!!

Matthew has a new pediatrician, we have the ceiling lift up in the tiny bathroom, a new hoyer manual lift, he's been to see the neuro surgeon in Charlottesville to get his pump seen too, he gets all his DME needs, like milk, diapers, etc.. He doesn't have his first neuro appt till february and we have ortho and endo appts coming up soon.

Someone asked me what will I do if VA stops home health care... well, I'll just have to go shopping states again... I mean, they (the govt) continues to allow corruption in the handling of medicaid funding, they allow Drug companies, and DME companies charge outrageous prices, so I don't feel guilty one bit running around all over the place getting Matthew what he deserves. If you are without help for your child medical needs you better get moving. Before long there's not going to be any help for anyone.. all those taxes they take out of our checks is feeding the big dogs pockets, not ours. Don't let some lame-O state that doesn't know one thing about how to run their children's insurance program keep your child from getting what he deserves. And don't stay put in a state that has the highest unemployment rate in the US and rates 51 out of 51 being the WORST in providing for their disabled & handicapped citizens. That just makes me sick.

Here are a few pics from the whirlwind move.

Matthew at Steeles Creek Park, 1 on MANY

parks very close to our house.

Even Gizzy has a new friend Marley

that comes to see him every morning.

I get to spend a lot of weekends

with my beautiful Granddaughter Makenna.

She loves her bubby Matthew more

than she loves anybody.

I bought all used furniture

from thrift shops.

All of us gals at Steeles Creek

Even sideways we love eachother

My awesome son. Without his help

I"d probably still be sitting in MS.

My wonderful, awesome, trustworthy,

faithful & loving husband John

with our angel Matthew

My Rock on a rock.

Just one of many beautiful days in Bristol

I hung clothes out to dry. Matthew was

a big help as you can tell.

You'll never believe where we are in our journey!

2010-11-07T05:39:00.000-08:00

I have not posted since early June. It's been like a whirlwind but wait until you hear how far we have come in our journey! I made some goals in June and I stuck to them with avengence. Didn't let anyone get in my way and if they did, well, they are probably mad at me, ha.ha.

I must update about the baclofen pump surgery Matthew had in March of 2010. Besides his feeding tube, this was another surgery that I am very happy with. His hip pain is 85% better. His gait is incredible! Remember, before surgery you couldn't get a flat palm between his thighs and changing

a diaper was getting impossible. He can get his legs almost flat and sometimes he is so loose, it's like changing a newborns diaper..(well not that loose but there is a significant difference.) ADVICE: Get a baclofen pump if your child is diagnosed with severe spacticity and it's so bad it's pulling their hips out of socket and causing atrophy in the joints! Don't wait until the atrophy sets in and the hips are dislocated!

Guess where we are living. Tennessee? No.. BRISTOL VIRGINIA.. The Birthplace of Country Music

Bristol is located in the Blue Ridge Highlands region of Virginia and lies directly on the Virginia/Tennessee state line. Washington County surrounds the city.

After researching for a while, I found out that the waiting list for home health care for Matthew would be almost as long as the one in MS. So, as bad as I wanted to move close to family I had to keep looking. I have an FB friend that lives in Virginia and I began corresponding with her. First of all, she said what I was doing is called "shopping states." So I did more shopping and found out Virginia has their waivers broken down and go BY THE SEVERITY OF THE CHILDS NEEDS..DO YOU HEAR THAT MISSISSIPPI??? THE SEVERITY OF THE CHILDS NEEDS AND BREAK DOWN WAIVERS!!!!....
After I got all my facts straight and did my homework I set my goals. I found that through a waiver called EDCD there was NO waiting list for him to get an attendant. That was all the push I needed to get me moving. Didn't matter if it was a nurse or not. I just needed some kind of help.

The way things fell in place will amaze you. My oldest son moved back home while him & his wife worked things out. He already knew of my plans to move before he came back home. I offered them our house in MS... all they had to do was take over the note...a lot less than they were paying and take over the utilities. As they were unpacking their dishes, clothes, etc.. I was using the same boxes to pack mine up in! My son had some time off so he pulled a 20ft trailer all the way to VA for me. My sisters best friend was working on a house that they were getting ready to rent that they had turned into a 2 bedroom duplex. Great price, great location, beautiful old house.

My dad and my son Casey built Matthew's ramp. It was early July and it was HOT! As of July 1, 2010, we were official residence of the State of Virgina, City of Bristol. (For your NASCAR fans, I am 2 exits away for Bristol Motor Speeway!) Gotta take a break now but I have even more exciting news to share about the services we are getting now!!! And If you are wondering about my husband, well, I'll have to tell you about that too!

I'll tell you all about the NEXT photo in my next BLOG.

Quick note...

2010-06-20T20:27:00.000-07:00

The fruits of the Spirit are the qualities of character God grows inside of you. Our AngelBabies are here or have visited us on earth to help our character grow and know REAL love, joy, peace, longsuffering, kindness, goodness, faithfulness, gentleness, and self-control. I really appreciate the magnitude of this experience I am having with Matthew. Feel deeply sorry for those that have turned him away...

When I think of what everyone is missing out on, I want to just cry because I know it's nothing else they will ever get to experience in their life again.

The picture is of us at the neuro's office... WAITING 4.5 HOURS! Longest on record. lol Couldn't leave.. had to get his pump turned up one more time..

Moving FRIDAY or SUNDAY!!!! Yeah!!

Got Official Word that Matthew can get help! Just gotta get there!

2010-06-15T18:02:00.000-07:00

If you can help us with moving expenses, please use the link above to donate. Any amount will be used for that purpose and will be greatly appreciated.

After all the research, I have finally come to the conclusion that there is an EDCD waiver in Bristol Virginia that means Matthew can get up to 40 hours a week of personal attendant care. According to Rod Snodgrass of Bristol VA, social services, THERE IS NO WAITING LIST FOR THIS WAIVER, I REPEAT NO WAITING LIST. He was the friendliest person I had ever spoken with on the phone from a Dept. of Human Services. He as helpful and sounded like and angel on the phone when he said that if Matthew was as disable as I say, he would qualify and we would be approved for care. After he is screened and approved, we have to find the attendant. That attendant will be paid by VA Medicaid, 8.50 an hour. They will have to be able to pass a background check. Once we find the person another person comes out and gets the info for the bg check and gets info for a direct deposit account to be set up. The first thing I have to do it go to the Dept. of Social Services and get Matthew transferred from MS medicaid to Virginia Medicaid, then get the appt with Mr. Snodgrass...

We are waiting on the rental agreement from the landlord in VA for the duplex. My sister has seen it and im taking her word that If she would live there, then so would I. Bristol Va is kind of like Gatlinburg..small town, lots to do, lots to see! TN is 9 minutes away.. that is Bristol TN, and about 20 miles further is Kingsport, Church Hill, where my family lives.

We have not sold our house but luckily have worked things out with my son & his wife to take over utilities and a very small monthly note . They could not find a better deal if they tried Im sure. I could rent it out for more but I want them to be able to have a place to stay while they are in college that won't cost them a lot of money. If they decide to move, then we can rent it out.

Matthew will have his hip surgery after his pawpaw John get down there and gets to work. Then by that time I will have an attendant and help so he can get his hips fixed. He's in pain daily when moved but not extreme pain. It's just not fair that he has to wait until I can get help to move. Everyone I know works or really doesn't care enough about Matthew to offer to help.. Sad but true. I have relatively no social life because most of my friends have moved on with their lives.. while I remain at home for the past 6 years almost all day every day in my "cave" as John calls it. We used to go to the park, to the pool, etc but I just can do it anymore. He's too big. I can't even get him in & out of the pool. He does not even like the pool right now because of his hips. I can't let MS hold me back any more or worry about what others think, it doesn't matter.. only thing matters is that I get help with Matthew so he can have his surgery and so we can have some kind of a futures. After John gets up there, I am planning on going to nursing school at Northeast State University for either nursing or respiratory therapy... Well that's the big Plan. I am still trying to figure out just how we are going to do this financially but I am going to do it even if I have to get residence in VA and pay the first months rent and stay at my mom's until I get enought to get utilities turned on.. I have to have residence in Va before I can get it.

MS RANKS 51 OUT OF 51 STATES, BEING THE LOWEST IN PROVIDING CARE FOR DISABLED AND ELDERLY. If anyone thinks I am going to stick around here until I drop dead from having no healthcare myselft and have matthew put in a state mental institution, they are sadly mistaken. I can even get insurance on myself in Virginia. MS does not even consider the severity of the child or the situation in issuing attendants and even so, they have not sent any nurses or home attendants out since 2003.. we've been on the waiting list since 04. I've done my part in rallying and writing, calling, and emailing state senators, representatives, and the governor but continue to be crushed like what Matthew and I need is not important.. like I am just asking for a handout.

More disabled and intellectually challenged children are going to continue to be abused and killed by parents or caregivers if MS does not see funding these programs as a priority. I know a lady that has leukemia and no insurance, her child is serverely disabled. She is postponing treatment because she cannot find anyone to keep her child for her so she can go into the hospital. Now she's having to put her child in a state mental institution but is also having to wait for that. There was a case in texas where a grandmother left her severely disabled grandson by the side of a lake to die because it was too much for her to deal with. Some people (like me) are able to deal with it but there are some that are not mentally able to handle it. The grandmother I was speaking of was only suppose to watch her grandson for a week but the childs mother never returned to pick him up. This was in Texas and Texas has a long waiting list too. If you surf the net you would be shocked at how often this happens in MS. It's not acceptable just because these children are severely intellectually challenge, nor will it every be.

So this grandma is not going to wait until she can't handle it anymore. I am going after help. I cannot wait any longer.
If anyone would like to help us with the move financially we would be so grateful. I have been keeping a list of the people that have helped up financially with Matthew and as soon as I get a job as an RN or a Respiratory therapist I am going to start paying people back and also putting aside at least one weekend a month giving free services to parents of handicapped children a break by offering sitter services in my home..... Well, that's the plan... but it's all up to the Man upstairs but the way things are falling in place, it looks like this is what I am suppose to be doing.

A Poem and finally, it's probably going to happen.

2010-05-15T15:23:00.000-07:00

No, our angels won't be around forever and I think that if anyone claims to "love them" they should show it NOW. Don't wait until it's too late.. and remember when you act like he doesn't KNOW or is does not matter so its not worth your time to visit or spend time with, it will be YOUR fault when he is gone. NOt MY fault because I have never kept anyone from visiting him. There will be no excuses. He may not get mad and continue to live peacefully without your love or help but Ganny feels the hurt for him when he is treated differently than the "NORMAL" kids in the family. Ganny has to deal with the rejection for him.

Occasionally, we are graced with the presence of an earth bound Angel.
They are unable to stay with us for long, but while they do, they bring unprecedented joy and happiness to all they touch.
While they are here, we bask in their goodness and marvel at their contribution to the world.
When they leave, we are left with the devastation that comes with losing such a wonderful being, but we must remember the earth bound Angels are not ours to keep.
They are ours to enjoy, learn from, and behold until they return home.
Author unknown

MS Ranks 51 out of States as for services they provide for children with disabilities. 51 being THE WORST. I have been on the waiting list for 6 years for help with Matthew. Neither I not my husband have insurance or any hope or retirement security. If something happened to me tomorrow, there is NO ONE that would give up their life to help with Matthew.
I am about 85% sure that I am taking him and moving to VA within the next few months. Really don't care who gets upset and pretty sure that no one will miss him. I can get the EDCD waiver for him without being on a waiting list. Even have a place to rent for a while so I can establish residency. My family will only be 20 minutes away. I know they will help because they did when they were here. I am going to do what I have to do to get him there. He will qualify for more than just the one waiver. He will get a LOT of help and the resource he needs to live a healthy life. He is to the point of being totally bed ridden if I don't get help soon and that is not the life he is going to live. I have put my life on hold for 8 years in MS the only thing that has happened is he's gotten bigger, more to handle, I still don't have any help, no family to help on either side so I hope no one feels they have the right to say anything. I am doing what I best for Matthew and our future. May even have to get into somebody's pockets to qualify for the waiver but I dont care about that either. My husband and I have talked about his for a long, long, time and it looks like I am the one going to make the first move. I will noting our steps along the way so if anyone else finds themselves in our predicament, they can see what I did because I have big plans and they all include Matthew, and my husband. My kids are grown and make their own decisions, have their own families. I can't stand to see Matthew lay around most of the day.. I can't even take him to the pool anymore because NO ONE has time for him.
Some may say, well you deserve what you got, you new it when you were GIVEN custody... NO I didn't My husband & I was given custody believing that his mom, dad, family, my family, my kids, etc would be around to help as they said they would but little by little everyone slowly thought I can do it all myself. Then they say "Oh you are so strong". You know what? I am so SICK of hearing that. Now if someone would just give us the money to move, that would be wonderful but I don't see that happening either. Everything has always been a fight or a battle to get what is best for Matthew but I have come armed and ready.
Anyway. Look our VA, here we COME!

Happy Mother's Day/ A poem to remind you that your mother won't be around forever.

2010-05-08T20:09:00.000-07:00

Mother’s Love

When you were 1 year old, she fed you and bathed you.
- You thanked her by crying all the night.
When you were 2 years old, she taught you to walk.
- You thanked her by running away when she called.
When you were 3 years old, she made all your meals with love.
- You thanked her by tossing your plate on the floor.
When you were 4 years old, she gave you some crayons.
- You thanked her by coloring the dinning room table.
When you were 5 years old, she dressed you for the holidays.
- You thanked her by looping into the nearest pile of mud.
When you were 6 years old, she walked you into school.
- You thanked her by screaming, “I’M NOT GOING”.
When you were 7 years old, she bought you a baseball.
- You thanked her by throwing it through the next-door-neighbor window.
When you were 8 years old, she handed you an ice cream.
- You thanked her by dripping it all over you lap.
When you were 9 years old, she paid for piano lessons.
- You thanked her by never even bothering to practice it.
When you were 10 years old, she drove you all day, from soccer to gymnastic to one birthday party after another.
- You thanked her by jumping out of the car and never looking back.
When you were 11 years old, she took you and your friends to the movies.
- You thanked her by asking to sit in the different row.
When you were 12 years old, she warned you not to watch certain TV shows.
- You thanked her by waiting until she left the house.
When you were 13, she suggested a haircut that was becoming.
- You thanked her by telling her she had no taste.
When you were 14, she paid for a month away at summer camp.
- You thanked her by forgetting to write a single letter.
When you were 15, she came home from work, looking for a hug.
- You thanked her by having your bedroom door locked.
When you were 16, she taught you how to drove her car.
- You thanked her by taking it every chance you could.
When you were 17, she was expecting an important call.
- You thanked her by being on the phone all night.
When you were 18, she cried at your school graduation.
- You thanked her by staying out partying until dawn.
When you were 19, she paid for your college tuition, drove you to campus, carried your bags.
- You thanked her by saying good-bye outside the dorm so you wouldn’t be embarrassed in front of you friends.
When you were 20, she asked whether you were seeing anyone.
- You thanked her by saying “It’s none of you business”.
When you were 21, she suggested certain careers for your future.
- You thanked her by saying “I don’t want to be like you”.
When you were 22, she hugged you at your college graduation.
- You thanked her by asking whether she could pay for a trip to Europe.
When you were 23, she gave you furniture for your first apartment.
- You thanked her by telling your friend it was ugly.
When you were 24, she met your fiancee and asked about your plans for the future.
- You thanked her by glaring and growling, “Muuhh-ther, please!”
When you were 25, she helped to pay for your wedding, and she cried and told how deeply she loved you.
- You thanked her by moving halfway across the country.
When you were 30, she called with some advice on the baby.
- You thanked by telling her, “Things are different now.”
When you were 40, she called to remind you of a relative’s birthday.
- You thanked her by saying you were “really busy right now.”
When you were 50, she fell ill and needed you to take care of her.
- You thanked her by reading about the burden parents become to their children.
And then, one day, she quietly died. And everything you never did, came crashing down like thunder on your heart.
If she’s still around, never forget to love her more than ever. And if she’s not, remember her unconditional love
In Picture: My mama Ruth and great-grandson Brendan

This Grandma's spirit will never be broken.

2010-05-01T13:02:00.000-07:00

If nothing is going well, call your grandmother. ~Italian Proverb
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Grandchildren are a grandparent's link to the future, and grandparents are the child's link to the past.
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I may not be rich, but I do have priceless grandchildren.
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Life is easier if you hear the steps of grandchildren walking beside you!
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Here's some little things I found on the net about grandma's. I loved my grandma and miss her very much. One thing that I remember about her is that she always would take time to just sit outside and talk to me. But remember that grandma's are not around for ever. One day YOU will be a grandparent and you will see that a grandparents love is MUCH different than any love you have ever known.. not the same as a mama's love, a sister's love, a love for your own child, an aunt or uncle's love, or a dad's love. Each love is totally different. I have found that the way I treated others has come back to haunt me 10fold and no one is immune to the same thing happening to them. You are not too good, too rich, too pretty, or too good of a mom or dad for it to come right back on you and bite you in the butt. So be careful how you treat others because KARMA will get the last word.

Grandchildren fill my heart with pleasure.
Each a joy for me to treasure!
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That when your newly born grandchild holds your little finger in his/her little fist, you're hooked for life.
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Grandmas are for stories about things of long ago.
Grandmas are for caring about all the things you know...
Grandmas are for rocking you and singing you to sleep.
Grandmas are for giving you nice memories to keep...
Grandmas are for knowing all the things you're dreaming of...
But, most importantly of all, Grandmas are for love. ~ Author Unknown ~

Thank God for my friends, even If I've never met some of them.

2010-04-28T05:43:00.000-07:00

I wanted to save this from my facebook before it was lost in the FB archives. I know I am not alone on this journey when I have friends that suppport me and encourage me when I'm feeling down. I opened a facebook account for that reason so I am now going back to that reason. Going to make a lot of deletions on the friends page.. I don't know why they call them friends, they never were..ha. Some have added me & never spoken to me. I have this blog for people that would rather just read and keep up with my life. So here's my Rant yesterday on FaceBook.

Charlotte Pugh Kappler I have to live with the fact that I am raising & loving a child I know is going to die before I do, I wake up every morning and several times a night to chek to make sure he is still breathing...(Kids like him just go to sleep & never wake up incase you did not know that) I DO NOT have time for games or the extra str...ess. I am closing the book on this one. I have to keep strong for Matthew. .
Heidi Lotthammer amen sister !!!!!!!!!!praying for you and matthew!!!
Yesterday at 1:01pm ·

Caroline Oates- Kelly I dont know who this refers to but i just want to say they will never be the person that you are honey. Your love for Matthew is amazing, but that comes easy because of who he is You have all our support here honey always xxx
Yesterday at 1:07pm · Helen Stamp Miko ((((((((((((((HUGS))))))))))))))
Yesterday at 1:08pm · Tina Kelley Atkins Do any of those "so called friends" know the true meaning of FRIEND?????

Yesterday at 1:13pm · Missy Buchanan Caroline said it the best! These special children are angels. We are so blessed to have them & remember God gives special children to special people.
Yesterday at 1:14pm ·

Andie Arballo Unless someone has walked in our shoes they will never know what it is to live every moment in fear of losing someone so precious and innocent!! I didn't sleep for fear Angel would stop breathing and I wouldn't be holding her when it happened!! Love Matthew with everything you have and enjoy him every minute of every day!! Don't worry what people
say or think because the only thing that matters is that Matthew knows how much you love him and that you know you are giving him a wonderful life full of LOVE!! God bless you both!

Yesterday at 1:25pm · Charlotte Pugh Kappler I am just trying to remind people that there are human beings under a lot more stress than they could ever know and things they say can harm that person a LOT more than they think. Chronic stress kills but it's not going to happen to me. .. sarcasm really stresses me out too.

Yesterday at 1:29pm · Andie Arballo I hear ya, I feel the same way! People should really stop and think about the things that are coming out of their mouths before they speak, words really do hurt! I hope whoever it was that pushed your buttons sees this and remembers to check their mouth! Hope you have a better day, love to you both!

Yesterday at 1:35pm · Charlotte Pugh Kappler Thanks Andie, I just get so stressed out because there are people that are so wrapped up in their perfect little lives that they don't take the time to see what is happening to their "friends' or blood relatives"they just don't care.. It's all about them... . Won't even take a few minutes a month, even a year to spend with these kids but won't think twice to do something or say something that will make things worse on the parents.. I am sorry now that I have complained but I don't want these people reaching out to me AFTER my Matthew has gone. We (people with kids like Matthew) need support & encouragement NOW not after he's gone. I am through complaining now. Hug Andie and Im so sorry about Angel. Wish I could be there for you.

Yesterday at 1:41pm · Jodi Park oh charlotte i so know what you mean ♥ ♥
from one mother to another with a special needs child
i heart you

Yesterday at 1:45pm · Charlotte Pugh Kappler That's why I am going back to the OLD reason I opened my facebook account.. to get support & encouragement from people that have kids like Matthew and also offer my advice from our experiences to people that need it. Thanks Ya'll
Yesterday at 1:50pm ·

Amanda Jayne Johal Clarke Charlotte honey, listen and always remember, what goes round comes back, this is so true, try and keep positive and focused and enjoy the special, precious time with your gorgeous Mathew, big hug chick xxx

Yesterday at 1:51pm · Sharon Sheagley He is worth everything too, Matthew gets the best love in the world. Anybody who does not have Matthew in their lives are missing Gods gift of life. I wish I could meet your little man, he sounds so wonderful. Not everybody gets blessed so much to take care of an angel, you are blessed Charlotte.
Yesterday at 1:53pm · Heather Schenkel Shaughnessy Aww, Charlotte, I too hate ppl . like that. I have found that my closest friends are some that I haven't ever met! You guys are the true spirits that keep my spirit up each morning when I sign on here.
I had someone call me Sunday with their "drama" which they caused mind you, and not ONCE said Hi or How are you?? Just laid their problems out
See More for me to fix.!! I cried later about that and Mike and I talked and realized someone like that is just not needed in our lives. You are so right to say what you said on all accounts. They want us there for them when they're not for us; and sadly you're right they will "try" to be there when it's too late.

You're one of the most AMAZING Mom's around and advocate so much for Sweet Matthew. We love you!! xxxx

Yesterday at 2:00pm · Andie Arballo You are so right the people who weren't there when I needed them to be aren't the people I want around me now, they should of come and got to know my little princess while she was here not come around now and say "oh I'm so sorry for your loss" I don't need their pity or their I'm sorrys!! My micro moms have shown us more love and support than my own family and for that I am eternally grateful to all of you!

Yesterday at 2:07pm · Charlotte Pugh Kappler Thanks ya'll. I know we all have rants like I do but I get so frustrated.. I am keeping my focus on Matthew but have also decided to continue to my goal of getting my RT (or nursing degree) I put it on hold thinking I may be able to help someone else for a little while but that's not the case any more.) I am going on with my degree, even if I have to move to another state to get help to take care of Matthew.Matthew is my priority and I want him to have the best and I can't do that thinking someone else is going to step in & help with that because it's not going to happen unless I go after what he needs and that's what Im going to do. I might be 48 years old but at least I will be a 48 years old with a nursing or RT degree, retirement, insurance, and full time attendant care help with Matthew in MY home. Not letting anyone or anything get in my way this time.

Yesterday at 2:10pm · Crystal Pigg You go Charlotte I am so proud of you and Matthew. You truly are an inspiration. Matthew is a beautiful little boy and he is so loved. I can't wait One day I will meet little matthew. I love yall so much. My Danielle watches over her friends on earth Daily!!
Yesterday at 2:39pm · Charlotte Pugh Kappler Thanks Crystal, I know she does. When I get my degree and make lots of money we'll have to meet up somewhere!

Yesterday at 2:45pm · Maria Orozco Awwww I know how hard this can be .... Im going trough some horrible things at the moment ...I wish i could forget ..I pray 2 God 2 give me the strength & clarity in my mind 2 not let these soo called friends mess w my peace .May God bless them...because unless they have ever felt the fear of ever loosin their bbs .Theres no way they could ever know what a liss mommy feels every day ... or how many times we thank God our bbs made it trough 1 more day!I'm sooo grateful 4 havin Alex in my life because he has made me the person I'm now ....He is the light of my life ! Thanx soooo much 2 every1 in my new family !!!without u guys , I dont think i would have much support from my soooo called friends ! I thank God 4 each & every1 of u ! Much love 2 all & ur bbs & all the Liss Angels' ! xo

Yesterday at 2:49pm · Helen Stamp Miko Charlotte- if they weren't there for me when I needed them most, then I have no use for them now. Maybe moving to Tn wouldn't be a bad move-- your mom, sister and daughter are there, right? Do you think John would be up for a move? I know I would love it, as then you'd only be about a 3 hour drive from me. LOL And you guys are ALWAYS welcome here at the lake.
Yesterday at 2:50pm · Grace Pugh Shonts And 7 hrs from me!

Yesterday at 3:26pm · Shawna Parker Cromwell-Snead Charlotte and ABMs, all I can say personally is that I LIVE EACH DAY. And yes those thoughts are always in the back of my mind, but if I let the depression win over me, I WON'T BE LIVING. So, I don't take for granted each and every day. They are blessings with Miss Kyleigh. And when the day comes for her to leave this earth, I hope and pray thatit is in her sleep, without discomfort and pain of the seizures.Each person's choice and reaction is very personal and individualized. I don't mean to offend anyone, just know I do have great empathy and everyone bares their own crosses. Peace & Love.
Yesterday at 3:28pm · Shawna Parker Cromwell-Snead Ok OOPS! I was totally off topic. Sorry Charlotte...maybe it will make you laugh! I did a flubberoo!
Yesterday at 3:29pm · Mary Sanderson I mlove you----this is mama

Yesterday at 3:34pm · Angela Christie Emrick Taylor u know what u should not b thinking negative

Yesterday at 4:22pm · Charlotte Pugh Kappler I don't think I'm being negative. There is no cure or treatment for Matthew's diagnosis. I just need to make sure he has what he needs as he gets older which is someone to help me care of him, insurance for myself so I am able to take care of him, and retirement so I can take care of him when I retire. Right now I have none of that. HE will always ...
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be 3-6 months mentally but he will be the size of his age so that will mean long term care. Im just making plans and thinking ahead. If I don't he will end up in a State home.

Yesterday at 5:51pm · Shawna Parker Cromwell-Snead Charlotte, I know it's challenging period! I pray the money will be there to pay the tuition. But if I didn't go to school now and finish, then I would be and a bad place that I wouldn't want to be. It scares me that I am single parenting it here...but you know what, even though I was married, I was still a single parent. Financially things are tighter now, but you know what, in another year, I'll be able to test for my LPN. That creates more opportunities for me to provide for my girls independently and have good health insurance for them. If I can do it, you can do it lady. xoxoxo

Yesterday at 6:06pm · Charlotte Pugh Kappler Thanks Shawna. I have my mind made up. CMMC cancelled so I went with UMMC for RT observation. Im going straight for the RN or RT.
Yesterday at 6:15pm · Jennifer Graham Hamen I love you
Yesterday at 6:24pm · Charlotte Pugh Kappler Aww, love you too.. only you guys can know how it feels. Hugs to you all. Should have put this on my blog!
Yesterday at 6:49pm · Ann Leese Lewis Charlotte, please remember that God will never bring you to anything that he wont bring you though. I will always be praying for you and Matthew. He is so special, but so are you. I knew that the first day we met. If you need anything just let me know. I love you!!!
Yesterday at 6:59pm · Charlotte Pugh Kappler thanks ann. I know I can make it through just about anything. I am just going to have to make things happen myself and stop waiting on someone to step in and save the day cuz it's not going to happen.lol thanks for your encouragement! Love you too!

9 hours ago · Vicki Bever Doze There were so many years when we felt alone when Jared was having so many things going on and when we felt friends and relatives probably thought, "He's your problem, you have to do it by yourself." We only had my husband's sister-in-law and a couple of great friends who offered once in awhile to help us out.
May Heavenly Father bless Matthew and his family who love him so much.
6 hours ago ·

25 Days after surgery update.. (GREAT!)

2010-04-24T18:26:00.000-07:00

25 Days after surgery and Matthew is almost healed up completely. He is a trooper and is one very courageous little boy. He's had his pump turned up 3 times and is at 65%. Today was his first day without having any oral baclofen. He'll still get the 10mg at night until we get the pump turned up again in a week, then no more oral baclofen. He is a lot more alert and responsive.. He doesn't pass out every time he's in his chair. He's still sore and whines at night if I don't get up and move him at least every 2 hours now. The incision on his back is almost healed. Photo makes it look back but it's not. Finally, I feel we have made the right decision. He is NOT in any pain anymore from his hips being out of socket. The muscles are have loosened up enough that they are not constantly pressed again his hip socket. The neuro says there is NO reason for him to have a hip surgery if he's not hurting. There are kids like him that can't walk that have hips out of socket and live with it. I will take him to the orthopedic surgeon here and see what he says. It's obvious that having the pump has relaxed him so much more that he is no longer having constipation problems. We've had to give him babylax, just to get him to do anything. Now we are not having to give him anything. I think he's enjoying that part a little too much.. 3 times already today. lol
We are doing the happy dance.. Thanks for all the prayers. If it were me that had this surgery I would probably be walking around whining and feeling sorry for myself. You know Matt only shed real tears the first week and after that he just whined to let us know he was still hurting but usually stopped after we repositioned him or gave him pain meds. He is my hero!
The last pic is one we made for his PenPals in Ellington Connecticut when his teacher was here on Tuesday. Now, If I can just get it in the mail!

Today, 24 days later

2 weeks

1 week

Today April 25

surgery update

2010-04-19T19:41:00.000-07:00

Matthew's doing 99% better today. We are able to move him without him crying. He actually has not cried since we came home from the hospital. His spinal incision looks good. Not dried up but filling in & closing nicely. He's still on antibiotics for 8 more days. His spasticity has DECREASED dramatically. He's not even having pain from us rolling him over like he did before the surgery. Once this incision heals and we are able to get him in the whirlpool, I believe we are going to be able to get both of those legs straight out! See the picture?? That is a big difference. I am feeling pretty good about the decision to get this pump. It was a hard decision but I am see great results and the pumps not even turned up to the max setting for his age yet. He's also not sleeping all day and looking groggy since he's not on the oral baclofen any more!

I thought I would share some more of my precious grandbabies pictures that I edited using paint.net. It's a free software by google. I love it. The first three are Makenna. She will be 3 in July and lives in Church Hill Tennessee.

Brendan, Their daddy Korey photoshopped in the middle and Brantley on the right.

(This is Brantley, not Brendan)

Going home tomorrow and "One Believer"

2010-04-15T21:05:00.000-07:00

First, I have a new song called "One Believer" on my play list on your right. You should click on it and listen to it while your reading the blog.. the lyrics are beautiful

Looks like we will be going home tomorrow... incision is not infected and looks good. He's been on some strong antibiotics and kept off his back for a week. It really ticks me off that his doctor didn't tell us or the nurses right after surgery that until the incision healed is was extremely important that Matthew not put any pressure on his spinal incision and he needed to sleep and lay on his sides . The first four pictures are right after surgery and the next day. We were not told until the evening of day two, not to let him put pressure on his back. I even put him in his wheelchair. There was leakage when they removed the bandages in the hospital at the lower part of the incision.. that's where it all started. The incision's glue wore off and although I did the best I could the whole incision ended up pulling apart a little so it's taking a lot longer to seal up and dry up than the frontal incision. So it never was infected, never got infected. We were just here to make sure it didn't get infected.

A lot of crazy stuff has been going on up here.. it's scary,.. medicine dosage mix ups, IV dosage mix ups, information mix up... just scary. I'm just glad to be going home tomorrow. If he lays around here much longer, he's getting more and more prone to picking up the "house" pneumonia!

I'll write more on that when I get all my notes together. Meanwhile here is what Matthew's incision looks like now; brusing is fading and it's filling in. Nice and pink.. no red..

Now look at how good the pumps working since it was turned up!

I was able to get a pillow a between his legs. He tolerated it for about 30 minutes then he wanted it out. We are almost there with the pump dosage.. won't be much longer. We had it turned up 10% more since we've been here.

My beautiful, courageous little boy.

Here are some Sunsets I took from our hospital window

Update, we're in the hospital..again. counting to ten

2010-04-13T05:59:00.000-07:00

(Pic 1 & 2 is what the incision looks like now.)

That spinal incision did not seal up all the way before the glue wore off so I took him to the ER since I could not get an appt. The neuro surgeon on call talked with Dr. Hannigan and he decided to put him in because he wants to clean it up and re-stitch it. It's not infected but he want to make sure it doesn't get infected until he can get to it to clean him up. It is really bothering Matthew. He's crying when he's moved. He was actually getting better with the pain but I can tell he's going down if they don't get it fixed.
(In picture on left, this is left over bruising from March 30th. Don't know what the heck they did.. The IV wasn't even in this hand.) Also bruising on his scrotum.) Veda says he could have been lying wrong on his hand when they did the surgery and a blood vessel could have ruptured in his scrotum when the line was being ran of the cath could have caused it.) The world may never know.

Since we are up here, I am going to call the neurologist and see if they can come by and turn his pump up since we are already in Jackson. It is scheduled for Friday but it won't hurt them to stop by over here and do it.

When we were admitted, it was straight from the ER so I was not prepared at all. I had only a days supply of everything. Did not have any of Matthew's meds with me. They had no orders for meds because I didn't have the meds or dosages with me so we have to wait until John gets here.. around 10PM. I didn't even bother to ask what took so long. I have no motrin so we have to wait on orders for that.
I asked for Motrin at 5AM, still don't have it. I asked for Loritab an hour ago,, still don't have it. I am ready to pack him up and take him somewhere else. I am going give them 10 more minutes then Im calling Dr. Hannigan's office and telling them Im packing up and leaving with Matthew if they don't give him some pain meds.

Dr. Hannigan just came in. He said his incision didn't look that bad at all but they would fix him up and put him on antibiotics. He would check on the pain med. Wonder how long that's gonna take.

I had a lot of help with him last week. Mom, dad, Mary, and Makenna came
down from Kingsport, TN. Makenna was a helper too, in between the times she was spreading her "beans" (jelly beans) all throughout the house. She is my granddaughter, Matthew's half sister.

8am. and our nurse already left so I buzzed the new nurse and finally got the Loritab and Motrin.. Yes, she just left without making sure her patients were taken care of before she left or even relaying the information to the new nurse... what a sorry excuse for a nurse. She already had orders for the loritab.. she could have at least brought that to him.. Like I said, I still don't like Holland but I have to be here because I love Matthew.

The neuro called 10:03. They are going to come in and up his pm 10%. I don't understand why he is so much more pain today. It seems to be coming from his back.. I don't know.. It could be his hips.. He cries every time he wakes up.. even with the pain meds. Poor baby.. I try to make things better and this is what happens.
Last photo is the incision in the front. You can still see the glue is holding it together well. Bruising is fading.

Update on Matthew and Thank You to his PenPals from Windermere 4th Graders!

2010-04-07T22:51:00.000-07:00

Matthew is doing better. A lot better today... I guess. He just got sick right after we put him in the bed but I read that was normal after a surgery like this one. He gave me a scare when the spinal incision began draining last night but it was not spinal fluid. It has almost stopped now. He is still sore but every day I can see him getting better. He has an appointment Friday to get the pump turned up because his legs are very tight. He's not getting enough pumped in right now. The original appointment was not until July but I knew that was NOT going to work. The nurse was shocked at the low dose he was on and was glad to get us on in. My mom, dad, daughter, son and granddaughter have been down from TN and NC since we got out of the hospital. They all have been a tremendous help. I'll hate to see them go home this weekend. Not sure how I'm going to handle that. But Matthew is getting better. Just had a reader comment that her child's bruising & incisions were not nearly as bad as Matthew's. I will certainly be finding out why his were so bad. Matthew even has bruises on the top of each of his nuckles on his left hand when the IV was in his left hand. The bruising on his scrotum has faded. He has a bruise on his inner ankle. I think that's from laying on it too long or being pushed down on during surgery. I would pay a lot of money just to have been a fly on the wall during surgery with a video camera. (Yes, they make them that small. lol )

Check this out. Matthew has a whole class of really smart 4th grade kids from Windermere Elementary in Ellington Connecticut that adopted him as a penpal. I think they are around 9 years old. Cannot believe how great they are at grammar & spelling. Some of them write better than I do!

He received a banner and some beautiful cards with nicely written letters to Matthew. Some of the cutest had sentences like, "Are you really sick or just a little sick?", "I will put all my thoughts into you. I will think of you every day", "I hope you get better as soon as possible and get out of the hospital. I don't want a new friend to be in the hospital", "I really, really, really, hope you get well soon", "Don't get upset if the hospital food tastes bad", I had pneumonia in September and the food tasted awful, disgusting, and gross!","They should treat you like a prince or king in ther! Even the ruler of the whole entire word!" "I will definitely make sure my family and I will pray for you. I am positive that everything is fine.", "I'm trying my hardest to pray for you and pray for you," I hope you like the hospital food because sometimes it's not that great."

These are just a few that I picked out but each one was equally as beautifully written and just as special to us as the other. The art work was phenominal! Wow. I am going to upload some after I do some editing

It really is a blessing for us to get things like this in the mail for Matthew. There are a lot of people that don't see him as we do. As a whole person. Sometimes people will walk up and talk to me and not even say anything to Matthew. Not all of the time but a lot. Just because he can't speak back or see, they think he won't know the difference. I have news for all of those that pass by without saying anything. HE DOES know the difference. You see how he is smiling in this picture? Because his great grandma ruth is talking to him after his bath. He knows his ggmaw Ruth! But he can't know you if you don't talk to him and let him hear your voice.

So what I mean to say is there are not a lot of kids or adults that would do this for others. It takes a lot of effort. For years, I have always been the one to initiate card making for sick friends, family, or deployed military. This is the first time someone has done something like this for Matthew. So you see why it means a lot to us and Matthew. We are going to make one big book out of all the cards.

We're Home!

2010-04-03T20:44:00.000-07:00

We got home around 12 noon today. It's 10:30 pm and Matthew is stretched out, doing amazingly well, all things considered. He was sent home with a prescription for Loritab for pain and Omnicef as an antibiotic. He is still taking breathing treatments to get rid of the residual coughing and pneumonia. It will take another week to get him completely over it. Poor baby can't get in the whirlpool until his incisions are completely healed. Especially the one on his back used to thread the line to his spine.

I am still amazed at how good he's doing. He's still in some pain but the loritab helps with that every 6 hours or so. Thanks to a comment left by one of our followers, I believe the bruising on his scrotum was caused from the catheter that was used 21 hours after surgery. She mentioned that catheters may cause that and I believe that's exactly what happened when I think about it. They drained 200 cc's of urine he was holding on too and It looks like the nurse went to far with the catheter. I didn't know that could happened. He's only been cathed one other time in his life. After researching, I believe that the nurse was not trained well in that area so I will be calling the hospital's fifth floor nurse manager to let her know so this doesn't happen to another child. Only time this happens according to web MD is when the catheter pushes on the wall of the the scrotum and the catheter should not go that far. My poor Matthew...

I have pics of him stretched out but way too tired to upload tonight. I have all of my family except my sisters down for Easter and will have plenty to upload tomorrow. I'll have all the grandbabies in one place and am going to take millions of pictures!!

Ok, there should not be a bruise there!

2010-04-02T20:07:00.000-07:00

While cleaning Matthew with the top light on I noticed a bruise on his testicular sac right under the posterior portion of his penis. How in the world can there be a bruise there? Doesn't make sense. Probably something caused by carelessness, moving, rolling.. I just don"t get it but I will be letting them know about it. He is lucky to come out any surgery much less a major one. Why can't people be more careful and concerned? This is not the first time things have happened caused by carelessness of someone in the operating room that was totally unnecessary. I wonder if they video tape the surgeries. I want to know what happened. I'm going to research and see if there are chances of testicular bruising during the surgery.. I don't recall seeing that before. I am angry

Can't go home until Saturday.. Picture of Matthew bruised back

2010-04-02T18:04:00.000-07:00

Matthew pneumonia is cleared up but of course it will take a good week to get him completely over it. He is still in pain, day 3 after surgery but nearly as bad as day 1. Each day gets a little better. He has some extreme bruising. I was aware that they had to make a very long incision for the pump but not made aware of how they run the line from the pump to the spine. Take a look at these pictures.. Looks like he has a bruise belt.

He is still in pain but it is definitely less painful everyday.

The doctor wants to keep us one more night to watch for infection because he had been running fever. More later.

After surgery video of incision and Matthew laughing!

2010-04-02T06:12:00.001-07:00

After pictures and Messages from Matthew

2010-04-01T15:16:00.000-07:00

Before Surgery

After Surgery

This is a big difference and who knows how better they'll get after some intense therapy and a whirlpool bath, Clonis not completely gone but about 85% gone

Well, the doctors made it official today that Matthew has pneumonia. I knew that 2 days ago. But you know how that goes. So today we started antibiotics for pneumonia. Can't go home till tomorrow. I decided to help him color in his big coloring book Bub brought him and he had some message for us and the doctors! There are some after pics of him with his legs down without much messaging. He couldn't do this before. And that is a volunteer that came in and read to him.

Matthew now has a Baclofen Pump

2010-04-01T07:28:00.000-07:00

What is it? The Medtronic SynchroMed^® pump is a programmable, battery-powered medical device that stores and delivers a prescription medication called Lioresal^® Intrathecal (baclofen injection). It is surgically placed in the abdomen. A thin, flexible silicone tube called as catheter is inserted near the spine and connected to the pump.
Why did he need it? Matthew's brain tells him "HEY hold your legs muscles really tight and never relax!" That's putting it in a nutshell. When that happens, your muscles will eventually pull your femurs right out of the sockets and that's what happened to Matthew.. twice.
He had a bilateral hip surgery a few years back because his hips were coming out of the socket. They had to break the femur, re-position it into the hip sockets and put back together with pins and plates. They also lengthened tendons of his abductors and behind his knees. This fixed the results of the extremely spastic muscles but not the cause. A year later I noticed the same thing happening again. I did some research and found the site about the Baclofen pump. At the office visit I ASKED WOULD A BACLOFEN PUMP HELP KEEP HIS FEMURS IN THE SOCKETS. I was told face to face that NO because Matthew was Not a candidate because he had poor head control and it would make that worse. If I could go back in time I would have Slapped that doctor upside his big head and said you are an idiot. Never just make up crap you don't know anything about. I find out later that baclofen pump has NOTHING to do with head control. So meanwhile, Im waiting on what I was told was inevitable, the femurs to come all the way out, and that he would just have to have another surgery to fix. We put off as long we could.
As long as he was in no pain, we would not do surgery.
Will it work for my child?
Well, 2 years later he's in pain.. even on 70 mg of oral baclofen, his hips were both out of socket. Now he kept them pulled up and it was hard moving and changing him. Any movements were painful because the balls joints (trochlears) were rubbing on the hip sockets.

So now we take him to another orthopedic surgeon. First question out of his mouth is "Why doesn't he have a baclofen pump?" I explain to him what I just explained here for you all, now that is where we are now. He wanted Matthew to get the pump first to see if it would help. The trial to see if he was a candidate was scheduled and it was like a miracle. HE WAS a candidate for the pump. It even relaxed from his arms down.. He actually has BETTER head control because the baclofen is not hitting his brain first.. it's going right into the problem areas.

If you want to read about the pump please click the link above this story. If you have any questions, email me personally ckappler@cablelynx.com

Matthew had the baclofen pump trial March 10th. It involved a CT scan to check his brain fluid levels first. CNS fluid was drained off during the procedure so baclofen could be inserted. For Matthew is was relatively painless. Within 5 minutes, we knew he was a candidate. We came back now on the 30th and he is sporting his new hardware now. There will be several adjustments on the amount and times the baclofen is released to get it just right. Right now he's on 100mg every 8 hours and he is relaxed and

I can tell a big difference in his spasticity.

Matthew's only problem has been congestion. He doesn't want to cough so he has kept a lot of gunk in his throat. He doesn't want to cough because when he does it hurts. A guy I found on you tube that had the same surgery told me to put my hand on the surgical area and hold down while he coughing because that helps a LOT. I am so thankful for people that can "speak for Matthew" that have been in his shoes. I am thankful for the advice. I will not stand for him to suffer when there are so many out there that can offer advice on what to expect or what to do for kids like him. I'll do what I have too and listen to whoever has advice that will keep him from being in any unnecessary pain. That's one of the reasons for this web blog. I don't want others to have to have their child suffer because they "didn't know". Of course, these are our experience and no kid is alike, Im not a doctor either so you can take the advice or leave it. It's your kid! lol

We are suppose to go home today. I'll post any other important things we learn about the pump as we go.. Remember to email me if you have questions. There are a lot of other warnings and problems that can occur with the surgery and the pump so make sure you read up and do your research.

Remember Leah

2010-03-28T22:40:00.000-07:00

While on my journey with Matthew, I meet a lot of special people. I think most of them are sent by God to keep me strong and to help me understand that my problems and my situation is nothing compared to what others are going through. My cousin introduced the FB world to Leah Helms. She had a son born on October 26th, not long before my grandsons were born. His name was Pierce, aka Baby Pierce. He was born with congenital aortic stenosis. I followed her journey with Pierce everyday. Her journey was what I would call fast and furious but to her it may have seem different....Baby Pierce fought from day one and he fought hard. He had a lot of prayers from people everywhere that were praying for him. Although I never met him, just knowing "about" him and seeing the courage he & his family had shown through their journey helped me put my journey back into perspective. We were all so sad when Baby Pierce was called home on January 15th. It is so heartbreaking to lose a child, but Baby Pierce had also lost a brother a few years earlier, so this was mommy's second little boy that God called back home. For such a strong and courageous woman, I felt I needed to do something to show that I care even though I couldn't do anything financially for her, the least I could do it try to put a few of those memories in a scrapbook. I know she probably gets tired of hearing "Oh you are so strong" or "You are so courageous" and has her weak moments just like everyone else but to keep holding on to God and to keep encouraging others even after requires more than human strength. It is a superhuman strength that only God can give someone. I don't feel I need superhuman strength right now but I did at first when Matthew was born. I'm just glad I know where to get my super human strength when I need it and when God calls Matthew home I will be able to say to myself "Remember Leah."

Matthew's surgery has been scheduled for March 30th. He just had a seizure a few minutes ago and I'm hoping we don't have to change the date again because that will mean he will have to re-do the labwork. Please say some prayers for him to not have any more seizures...

Here are some pages so far I have for Baby Pierce's scrapbook. If you would like to add a poem or send words of encouragement, just email me. ckappler@cablelynx.com

Having some fun with my Grandbabies pictures tonight.

2010-03-16T21:04:00.000-07:00

The Perfect Little Sneeze!

2010-03-16T12:33:00.000-07:00

Just thought I'd add this video for your entertainment pleasure. This is called the "Perfect Sneeze" by Matthew Sanderson. His surgery has been postponed until March 30th. That's if he has been seizure free and back to his old self for at least a week. He had 2 more seizures this morning which makes a total of 10 since he left the hospital on Friday...

Postponing surgery. He had 2 more seizures this morning.

2010-03-15T03:53:00.000-07:00

I will be calling to cancel Matthew's surgery this morning. 2 more siezures, make a total of 8. He has not had this many seizures in several years. I can't believe I'm still up since 3am.. watched a scary movie until 12 midnight! What's wrong with me???

I'll let ya'll know when the new date is. I wonder how I will be treated when I call to cancel. You never know.

Charlotte

Surgery may have to be postponed.

2010-03-14T20:27:00.000-07:00

Hi Ya'll,
Matthew has had 5 seizures since we returned home from the baclofen trial on Friday. This did not surprise me at all. The stress he was under with all the poking and prodding, the change in seizure med times, dosages, etc just got the best of him. I feel like it was partly my fault but the way it happened was so weird and quick...

I'll be calling the surgeons office to tell them we need to re-schedule the surgery. If Matthew has any more seizures. The last one was around 2AM. He was out of it most of the day.

Before we left for the test on Wednesday, I had given Matthew some milk of mag just to clean him out because I knew he would be doing a lot of laying around during the hospital stay. He had a good bowel movement on Thursday. When we got home on friday, his stool was like rocks. The only other time they have been like that is when he was put on the robinul . Robinul is for drooling and if you take too much it causes severe constipation. We ended up reducing the dosage and have increased water. That was 5 years ago. Matthew was on an IV most of the time and he is Never constipated when he's on IV. He gets plenty of water and also had given him grape juice. What I'm getting at it that after all the medicine mix ups, I believe he was given too much Robinul. After I thought about it, I remembered that I had to keep putting chap stick on Matthew in the hospital because his lips were so dry.

I am going to re-write my "So Let Me Tell Ya About My Day" post in a more professional style and take it with me for the Nurse manager and Dr. Veda. I am really nervous about taking him back without having these issues resolved.

Matthew is doing okay now. He's listening to his MP3 Player.

As for me, I have got to get registered for college algebra so I can start Respiratory Therapy school , or nursing school this fall. I have to go to CMMC for 8 hours to follow a therapist and that will complete the requirements to get into RT school . If I see I don't like RT, I'll do nursing. That will mean I'll have to take the ACT over again for the 2nd time. I raised my math subscore from 12 to 18 but lowered my overall score from 18 to 17. You have to have an overall score of 18 and a 18 subscore in Math!! I am going to have to take some ACT preparation classes this. That is a hard test. Definitely not the same test I took in 1994.

Meanwhile I have started eating like a pig again but trying to stop. It's definitely stress related. My hair has started to fall out again, way more than the usual. Every time Matthew goes in the hospital, my hair does that.

I've had a few other personal problems that I can't even talk about because anything and everything I say could be taken the wrong way. Sometimes I wish I had a nasty foul mouth and spoke my mind and didn't care what others thought or said about me but I do care and I don't have a foul mouth so that's out of the question.. That doesn't mean I didn't "think" it though. It just hurts.
I wish there was SOME way that his surgery could be video taped. I saw one guy on
Youtube that had his video taped. Like this one. (Warning , it's graphic)

One major concern about the surgery is I worry that they will try to lay Matthew's legs straight out flat in front of him. My husband, John, says well he'll have the pump so he can do that.. well NO dear. Matthew will be "getting" the pump. His legs cannot be pushed down flat while he's getting the pump or after. Yes, they will be looser but they are far from him being able to lay them flat and straight. Remember that he has some atrophy from keeping his legs pulled up for over a year. Atrophy means the tendons, ligaments, and muscles have drawn up, tightened up. If you just push them flat down, you will end up injuring him because it will tear or sprain whatever muscle has atrophy. So Im wondering how they will do it without pulling his legs down. Does anyone out there know how that works? Doesn't matter is he is knocked out, those legs are not going down. The ligaments are not able to do that anymore.Understand? So I have decided to get a big black permanent marker and write "DO NOT PUSH MY LEGS DOWN FLAT!!!!".

I will be talking to the surgeon, surgical nurse, .. all the folks that will be in there with him but I'm still using the marker.

As he gets older, the surgeries get scarier. Reason is because he is highly prone to getting pneumonia if I don't keep him moving, doing back pats... He is 62 lbs now and that is not as easy as it used to be. He doesn't do much more than just lay there now days. He used to move his legs but he can't do that right now. Hopefully he'll be able to move them and I can get him back to the pool. I just don't see how much longer he can lay around from bed to chair to swing and that's it. That's why we have to get these legs fixed and THAT'S WHY MS MEDICAID NEEDS TO FUND THE MEDICAID WAIVER PROGRAM WITH ENOUGH FUNDS TO SEND SOME HELP OR I HAVE SERIOUSLY GOT TO MOVE TO ANOTHER STATE THAT IS SENDING OUT HELP. I AM NOT GOING TO LIVE IN MS AND JUST KEEP WAITING FOR HELP, MEANWHILE HE'S LAYING AROUND DYING BECAUSE I DON'T HAVE ANY HELP AND THE PEOPLE THAT DO HELP DON'T UNDERSTAND THAT LAYING AROUND WILL EVENTUALLY LEAD TO DEATH. All I want if for someone other than myself to give massages, put him in swing, read too, play with , move his legs, stretch him... I'll still do it, but I can't do enough. He needs a lot more movement than I can physically give him.. Too bad he doesn't have any relatives down here that will come by a few minutes during the week to do that. When Matthew gets 70lbs, I will be in another state one way or the other if we don't have some help. If anyone reading this has a home attendant or nurse, please let me know what state you are in and how long it took to get help. My aunt has called and said she will come over and help me move and change Matthew when we get home so I don't have to hurt him .. she is 64 and has a 100 lb handicapped child in a wheelchair and takes care of a mentally handicapped sister. She is the only one that has called and insists on helping. She has a nurse for her daughter she got 10 years ago. She is my husbands aunt. Sad that most of his relatives have not bothered to call or check to find out about him. Sorry, I had a lot on my mind.

2010-03-13T17:38:00.000-08:00

You'll see my words emphasized throughout my note. I am trying to help you feel the feelings & emotions I felt as all this was happening. Oh, and that voice in my head that tries to keep me from going postal on people was there with me the whole time. lol funny. He calls me "gal" sometimes. lol Here are some things that has happened to us in the last 2 days because of unconcerned and untrained people.

1. Made a detailed list of Matthew's meds, times, .. a first grader could read and copy it.
First meds came, no depakote.. had it down for 2 times a day instead of 3. Had to wait for doctors orders an hour when I had it right there in in suitcase. (no problem, it will get better)
2. brought me 1/2 of a drooling pill at 12 noon. He doesn't get anything at 12, he get the drooling pill with 4 other meds at 2:00. Just breath charlotte2. They gave me a crushed up pill at 5:30, said it was 10 mg of the baclofen. It was 20 mg of baclofen. He is only suppose to get 10. Breath in, breath out, let it go. From that point on i told them no crushing until I saw it first.

3. The evening nurse was about to give him his 20 mg at 8 and thought it was unusual for him to have it so close together.. good thing because he could have died.walk it out.. walk it out charlotte
4. I walked what seemed like a 1/4 mile round trip to the OBGYN waiting area to pay for a parking pass. They were closed for an hour because computer was down or something... it's ok, just be cool.
5. I walked back to the business office 2 hours later, they were open but didn't take the money or order for the guest trays anymore any more, I had to go to the cafeteria in the hospital part??? In the total opposite direction.
6. I walked to the cafeteria and paid for 5 guest trays for my stay, almost 35.00 bucks.
7. I didn't get the first meal until the NEXT evening.. the nurse called about twice. Finally, I called the complaint number and had two trays in my lap that evening.Eat both of them trays of food Gal, you need your strength. So I did!
8. I am JUST getting started.
9. Was told we could go home at 9:00 after we see the surgeon.
10. Surgeon says ok we have surgery.. blah.. now I have to wait on his nurse to come talk to us
11. An hour later she comes by gives me the appointment and says I have to wait on this other lady to come by. 2 hours later she come by tells me to go to anesthesia for pre-op work up before we go home. We're almost home now?.. well are we? Forgot, and do not have time to re-number this junk.. but we had to go to registration and register AGAIN for the surgery on Tuesday.. then they send us to anesthesiology.
12. We get discharged, the nurse takes out Matthew's IV and we go to anesthesia 6th floor children's hospital.
13. Anesthesia stops us in our tracks and said, Oh you have to take him to get lab work, in the other side of the hospital in the new children's clinic on 2nd floor. Throw some water on your face charlotte.. be nice, it's you, it's not them..
14 We get their they look like at us like we are crazy and not sure why they sent us to them. ok, roll your eyes charlotte, give them a dirty look then breath..
15. After they call to find out why we are there (after not listening to me) we wait another hour, they bring us in. snatch up your purse look em straight in the eyes, then breath..
16 REMEMBER THEY TOOK THE BLASTED IV OUT WHEN WE LEFT THE ROOM. Matthew has very thin viens. By this time he is wet, time for meds and to be fed. So I complained about having to re stick him and they are sorry & don't know why the surgeon didn't request the draw before we left the room... breath gal, breath!.. you know it's you,, its YOU.. not them! I only gave them 1 chance to find a vein and of course they blew the vein. Then they said they knew a girl that could get it that worked in ER so I fed and medicated matthew while we waited on her.AS soon as she walks in the door, matthew PROJECTILE VOMITS everything I just gave him. He is covered and me too. So back out of the chair on the table.. we both smell horrible..breath in, breath out, don't cry, clean up your baby. Get him cleaned up back in the chair, she finds a vein in his foot gets it first time. That's not your back you heard cracking.. it's just your imagination.. breath..
17. Now we are going back across the hospital to the 6th floor to anesthesiology.. have to go in a room that is so small, Matthew & his chair, me and the nurse couldn't all get in at one time.. lol.. That took about 30 minutes. Laugh charlotte, just laugh ,you are almost to home plate.
18. We make it home around 4pm rejoice charlotte! I just went to walmart, bought a straight talk phone. the cashier scanned it twice, voided, and I had to wait for the CSM to void. Got home to activate and she not only voided the charge but also the serial number so the phone has to be taken back. Go to bed gal, just GO TO BED!

WHAT THE HECK IS THIS ???STOMP ON CHARLOTTE AND MATTHEW DAY.. THIS IS JUST RIDICULOUS. OUR LIFE IS HARD ENOUGH WITHOUT ALL THIS EXTRA CRAP. LORD JUST GIVE ME STRENGTH. I REALLY FEEL i need to invest in some good boxing gloves and a punching bag.. I feel like the whole world has turned on me and MATTHEW I honestly don't know why. I AM GOING TO BED.

Who speaks for the kids in the hospital that have not advocates and YES there are many kids up there with NO ONE.

I wonder how many people have died because of stupid carelessness like I saw?
I am going to write a letter, similair to this one to the director of nursing. I will also be demanding that I either give the meds myself or that they bring it to me before crushing or mixing and let me ok it. When I become a nurse I will always check with the parents or caretakers first. I don't want to kill no one so no one should cop an attitude whenever I ask to see the meds first.

Here we go again in 2010

2010-03-12T09:44:00.000-08:00

Well, we are backkkkk! Matthew turned 8 years old on February 18, 2010.T he last 3 years have been almost uneventful. Seizure are controlled to about 2-3 every six months! Email if you want to know how he's doing this!

For the last year, Matthew's muscle tone has slowly pulled both of his hips out of socket. We waited as long as we could before putting him through surgery. For the last 2 months his hips have really been bothering him because the femur heads are rubbing on the hip sockets bones. It is almost impossible to change a diaper because he keeps his legs pulled up close and tight. He is in pain any time he is moved.

The orthopedic doctor says he can either put them back in the socket or do a femoral head removal but he wants to see if a Baclofen pump will help first.

So now we are in Blair Batson hospital in Jackson, MS. We had a baclofen trial on Wednesday which involved injecting baclofen directly into his spinal colulmn. Had to be done inpatient becaues of the risk of infection and the fact they had to drain out spinal fluid to inject the baclofen.

If I had to describe the results in one word I would have to use PHENOMENAL! He was feeling no pain.. well maybe a little if we stretched him out too far or accidentally caused his femurs to rub the hip sockets. It even took away the spasticity of his right arm. So he is definately a candidate.

We're ready to go home now.. just waiting for the surgeons nurse to come by and do a consult and set up the appt. for the surgery which will be on Tuesday. Wish she would hurry up. 99 percent of our time up here today has been just WAITING on people.... Ya'll know what I mean.

So the plan is to take a video Matthew's spasticity before and after surgery. The surgery works right away. I posted a video of a guy getting a baclofen pump. It's not pretty and is graphic so don't watch if you can't handle it.

I'll update more on Tuesday. I wonder how much money it's costing MS medicaid for us to sit here in the room waiting on someone to come by and talk to us???

ANother update.. I earned 2 associate degrees and graduated May 15, 2008! since no one wants to pay me enought to pay a CNA with those degrees, I decided to try to go to nursing school. Right now, I have all but college algebra and will try to get in in the Fall of 2010.. I know Big Plans, Dreams, but I'll reach them, even if it's not this fall.

OH, my youngest son & his wife gave me 2 identical twin grandsons, Brendan & Brantley Nov-2009.. They are awesome... still don't quite know who is who sometimes..

Charlotte

Stop and Smell the What???

2009-08-02T22:49:00.000-07:00

GOT STUFF TO DO, WELL, MAYBE NEXT WEEK. Can't I just wait until the next time the roses bloom?

This morning was bad. Not sure if it was something wrong with me.. you know I am 44 and suppose to be getting close to the "M" word but most of the time I feel justified in my mood swings even thought I don't have any symptoms of "M".. I don't even know if that was ME saying that or if it's because of "M". Whatever...
What was the very first thing that happens when I open my eyes this morning? Matthew has rolled to the edge of his bed with his head pressed again the side rail. The bumper pad has fallen onto the floor. Not only is he on his side, he's vomiting and choking on his vomit because of the position he is in. If I had not woken up, I am positive he would have choked to death. He was just fine yesterday. Has been just fine for the last 4 months. It's like one minute, everything is in control. I do what I can to keep him healthy but then the next second, he's sick and my world is turned upside down. I have no control whatsoever. He can't roll over so how the heck did he get on his LEFT side?? HE NEVER rolls to the left. Did he have a siezure that put him on that side? I will never know now but I know I will be moving his bed closer to mine.

Sometimes he will be sitting in his chair just fine, the next minute he's choking on his own drool. To the point that he get the red spots on his face and neck. I run for the suction machine and by the time I get back with it, he's already choked to the point that he is wheezing from aspiration. This doesn't happen once a day, once a week, once a month.. I never know.

So I suction him out this morning and get the breathing machine to help him get some oxygen into his lungs. Take off his wet shirt and see that he has clawed himself on the top-front of his shoulders. He had his arms pulled in really tight when he was choking so I think he clawed himself then.

He feels feverish so I take his fever and it's up but not a lot. I run his bathwater while he is recovering from the choking episode.

While his bathwater is running, I fix his morning meds. Phenobarbitol for seizures, Robinul for his excessive drooling, Depakote for siezures, Baclofen for tight muscles, Keppra for seizures, Levocarnitine to help his liver stay healthly from all the seizure meds and tylenol or motrin for his hips that are both out of the socket after already having a surgery to put them back in a few years ago.

He's in pain because of the hips in the morning. The ball joints are rubbing on his hip sockets every single time he is moved.

Finally the bath water is ready. I have to pick him up and put him into the whirlpool in his bath seat. Pry his hands apart to get the straps around him.

I get in with him most of the time and give him his meds, peptamin JR. (formular) and water through his tube and while he's doing this, he is getting another breathing treatment.

After he's washed up. I get to clean myself. He sits in the tub and relaxes while I get out and get my robe on.

I have to pick him up from the seat and put him in his bed about 5 steps away. I usually warm up some towels in the dryer because he hates to be the least bit cold when he gets out. I try to get him dressed without hurting his hips but I usually end up getting a gasp or whimper because I have no other way to get a diaper on him without moving him. I have to used powder and I have to try between his toes, fingers; all his little cracks or he gets fungi, like athletes foot. If he has not pottied, I have to give a babylax and wait until he does his business, and clean him up again. He has constipation problems and he will not "go" until "after" he's eaten and taken a bath.
Its very hard getting his shirts on because his arms are so tight.. I feel like I am pulling and pulling and by the time I am finished getting him dressed, I am exhausted. We have an appt in Sept. to discuss getting a baclofen pump but that's not going to keep the ball joints on his legs from rubbing on his hip joints. How am I suppose to let him go to school and trust that those people will be as careful as I am when they change his diaper? I'm not!

After he's dressed I pick him up and put him in his chair. My that time I can feel a tingling in my lower back.. Not a good tingling. If I touch my back when it's tingling, I can't feel the spot I am touching. It goes numb. I'm praying that feeling does not travel to my hips or legs or we are in trouble.

So now he gets his hair combed, teeth brushed, and then It's finally my turn. By this time, my hair has tried wet and looks awful so I have to dampen it, blowdry it out again. I don't even know why I bother putting makeup on here lately. We hardly go anywhere and I don't have to worry about anyone coming over here...... for some reason... I guess they think I might ask for help or they feel guilty for not offering? Who knows. People are strange.

Anyway That's the first 3 hours of my morning. I have not had coffee, or even had time to go to the bathroom. I think I am too tired now to get to the afternoon routine so I'll save it for later.

I was not in a "bad" mood, I would call it a frustrated or defeated mood. I always feel that way when Matthew gets sick and I can't do anything about it. It's like I am mad at myself..
After things settled down, I check my email and social networking sites. (The WWW social networking sites like Facebook, MySpace and Yahoo groups the only social life I have besides taking the online classes and having chats with my classmates. Because I can't get out and go and I don't have a relief caretaker for Matthew for anykind of life outside of my house) Anyway, I am finally drinking coffee, frustrated but my nerves are finally settling down....
I had posted on my facebook, myspace, and emailed my friends in my address book a few weeks ago asking them to send me some recipes for a cookbook fundraiser project. I don't "want" but NEED to have someone come out and build a platform to lift Matthew's whirlpool so I can get him in and out using his LIFT so My husband and I don't break our backs, pull a muscle or worst case, fall and drop Matthew.. But anyway..Out of a total of approximately 500 contacts, I got recipes from 3 people. I only had 5 weeks to work on the book, 3 weeks had passed by, so after all my fiasco this morning, my status on facebook reads Charlotte says"Fundraiser cancelled". If I can't get but 3 people to send me recipes, I'm pretty sure I won't be able to sell any cookbooks."
I have asked about 6 times for recipes.
Was I wrong to post that? I can see that most all of my contacts have taken many of the those facebook/myspace quizzes, post "junk" other people's walls. Send those stupid "facebook" drinks back and forth, play games, forward me tons and tons of junk email but no one has the time to copy and past ONE recipe?? My feathers are ruffled again.. Must be that "M" again.
How many times have I seen posts of people asking for prayer or reaching out for help and not receive any comments or words of consolation? Breath people, breath. lol Some of my contacts have over 200 friends but I sit and watch them get NO responses when they say, I am having major surgery today, or My dad just died.. they might get a few comments but why not at least Half send consoling comments? But the friends are too busy using the social networking applications and not interested in communication so what's the point? Did the definition of a "friend" change since I've been out of the pocket, taking care of Matthew?

I wonder who made up that saying "Stop and smell the roses."? That quote has been around a long, long, time. I wonder what that person would say now if he had to make up another saying for today's world? If you can't remember the last time you have helped someone, called someone just to talk, or did anything for anyone, then you have something to think about.

I hope I don't offend anyone. If I did, please just ignore these words and brush it off to the "M" word or just call me crazy. If you delete me from your contacts or friends, I wont be upset and promise not to try to add you back.

Posted by Charlotte at 4:22 PM Links to this post

A typical morning at my house.

2009-07-31T16:22:00.000-07:00

This morning was bad. Not sure if it was something wrong with me.. you know I am 44 and suppose to be getting close to the "M" word but most of the time I feel justified in my mood swings even thought I don't have any symptoms of "M".. I don't even know if that was ME saying that or if it's because of "M". Whatever...
What was the very first thing that happens when I open my eyes this morning? Matthew has rolled to the edge of his bed with his head pressed again the side rail. The bumper pad has fallen onto the floor. Not only is he on his side, he's vomiting and choking on his vomit because of the position he is in. If I had not woken up, I am positive he would have choked to death. He was just fine yesterday. Has been just fine for the last 4 months. It's like one minute, everything is in control. I do what I can to keep him healthy but then the next second, he's sick and my world is turned upside down. I have no control whatsoever. He can't roll over so how the heck did he get on his LEFT side?? HE NEVER rolls to the left. Did he have a siezure that put him on that side? I will never know now but I know I will be moving his bed closer to mine.

Sometimes he will be sitting in his chair just fine, the next minute he's choking on his own drool. To the point that he get the red spots on his face and neck. I run for the suction machine and by the time I get back with it, he's already choked to the point that he is wheezing from aspiration. This doesn't happen once a day, once a week, once a month.. I never know.

So I suction him out this morning and get the breathing machine to help him get some oxygen into his lungs. Take off his wet shirt and see that he has clawed himself on the top-front of his shoulders. He had his arms pulled in really tight when he was choking so I think he clawed himself then.

He feels feverish so I take his fever and it's up but not a lot. I run his bathwater while he is recovering from the choking episode.

While his bathwater is running, I fix his morning meds. Phenobarbitol for seizures, Robinul for his excessive drooling, Depakote for siezures, Baclofen for tight muscles, Keppra for seizures, Levocarnitine to help his liver stay healthly from all the seizure meds and tylenol or motrin for his hips that are both out of the socket after already having a surgery to put them back in a few years ago.

He's in pain because of the hips in the morning. The ball joints are rubbing on his hip sockets every single time he is moved.

Finally the bath water is ready. I have to pick him up and put him into the whirlpool in his bath seat. Pry his hands apart to get the straps around him.

I get in with him most of the time and give him his meds, peptamin JR. (formular) and water through his tube and while he's doing this, he is getting another breathing treatment.

After he's washed up. I get to clean myself. He sits in the tub and relaxes while I get out and get my robe on.

I have to pick him up from the seat and put him in his bed about 5 steps away. I usually warm up some towels in the dryer because he hates to be the least bit cold when he gets out. I try to get him dressed without hurting his hips but I usually end up getting a gasp or whimper because I have no other way to get a diaper on him without moving him. I have to used powder and I have to try between his toes, fingers; all his little cracks or he gets fungi, like athletes foot. If he has not pottied, I have to give a babylax and wait until he does his business, and clean him up again. He has constipation problems and he will not "go" until "after" he's eaten and taken a bath.
Its very hard getting his shirts on because his arms are so tight.. I feel like I am pulling and pulling and by the time I am finished getting him dressed, I am exhausted. We have an appt in Sept. to discuss getting a baclofen pump but that's not going to keep the ball joints on his legs from rubbing on his hip joints. How am I suppose to let him go to school and trust that those people will be as careful as I am when they change his diaper? I'm not!

After he's dressed I pick him up and put him in his chair. My that time I can feel a tingling in my lower back.. Not a good tingling. If I touch my back when it's tingling, I can't feel the spot I am touching. It goes numb. I'm praying that feeling does not travel to my hips or legs or we are in trouble.

So now he gets his hair combed, teeth brushed, and then It's finally my turn. By this time, my hair has tried wet and looks awful so I have to dampen it, blowdry it out again. I don't even know why I bother putting makeup on here lately. We hardly go anywhere and I don't have to worry about anyone coming over here...... for some reason... I guess they think I might ask for help or they feel guilty for not offering? Who knows. People are strange.

Anyway That's the first 3 hours of my morning. I have not had coffee, or even had time to go to the bathroom. I think I am too tired now to get to the afternoon routine so I'll save it for later.

I had posted on my facebook, myspace, and emailed my friends in my address book a few weeks ago asking them to send me some recipes for a cookbook fundraiser project. Out of a total of probably 500 contacts, I got recipes from 3 people. I only had 5 weeks to work on the book so after all my fiasco this morning, my status on facebook reads "Fundraiser cancelled". If I can't get but 3 people to send me recipes, I'm pretty sure I won't be able to sell any cookbooks."

Was I wrong to post that? I sit and watch how many take all those facebook quizzes, post "junk" other people's walls. Send those stupid "facebook" drinks back and forth, play games, forward me tons and tons of junk email but no one has the time to copy and past ONE recipe??
How many times have I seen posts of people asking for prayer or reaching out for help and not receive any comments or words of consolation? Why can't people slow down long enough to help someone else for a split second are NOT friends. Breath people, breath. lol It's like you have social networking friends but the friends are busy using the facebook/myspace applications and not interested in communication so what's the point?

The best use I get out of the social networking sites is connecting with parents that have kids like Matthew.
I wonder who made up that saying "Stop and smell the roses."? That quote has been around a long, long, time. I wonder what that person would say now if he had to make up another saying for today's world? If you can't remember the last time you have helped someone, called someone just to talk, or did anything for anyone, then you have something to think about.

This rant is continued and spell checked at www.brainmalformations.com under the "stop and smell the WHAT?" link.

Random Pictures to help get this updated

2009-04-28T23:02:00.000-07:00

I have decided to keep blogspot and continue updated it since I am able to link to my new web page. Here's what happened since the last time I posted.

This picture was taken Easter 2009. As you can tell, Matthew is still here and doing great. Almost seizure free. However he is having trouble with his right hip again and we may be looking at another surgery soon. His appointment is May the 12th. I am really dreading this sugery.

Matthew turned 7 years old in February. And look how we all acted at his diagnosis! We thought he was dying then and the things we read said he might live two years. That's the reason I have started my new website. I don't want people to be naive and thing everything they read on the internet is true because its not!

My youngest son Korey (matthew is my grandson, but my baby)

Got married on April 25 to Larae Gardner. They will be parents around Decemember 1st. The wedding turned out beautiful as you can see from the pictures! This will be grandchild number three!

My second grandchild Makenna will turn 2 on July 4th 2009. Little Ms Independence.

Hey I just turned 44 so I am not an OLD Grandma. Don't believe me? Meet me at the military park and see who wins the 2.7 mile hike? I only just broke my record at 24 minutes. (This is mostly hills so its not a flat run.) Come on, shoot me an email. lol

Here's a cute video of the new kitten I've

been raising. I found him under the house. He was skin and bones. He's not anymore.. Anyone want a kitty? Look how sweet he is.. NOT

Found this is our archives! Birthday Poem I wrote

2008-11-20T17:28:00.000-08:00

I wrote this in 2005 for his birthday! I forgot about it... now I can add 3 more years to it!~

In 2002, statistics gave you 2, but we always felt that only God knew.
In 2003 we had so much fun, because our little angel was about to turn 1!
In 2004 it was number two. I thanked God for another year with you.
In 2005 you made it to "3". I was so happy you were still here with me.
In 2006 you did it once more. With Gods love and prayers, my baby turned four.
In 2007, our big boy turned 5, and those silly doctor's said you had "failure to thrive"?
It's 2008 and we took a ton of pics because our precious miracle, had finally reached six!

I'll keep adding to this poem, each and every year Because only God can say how long you'll be here.
Love Ganny

Seizure free today, compared to other posts

2008-11-20T17:09:00.000-08:00

Just wanted to note that Matthew has only had one or two, 14 second seizures in about 6 months. He has not had seizure meds upped in almost 2 years. He has had his phenylbarb reduced by 1/2 tsp.

Wonder what the neuro is going to think about that tomorrow? I have missed the last 3 appointments but I have to go this time, just to so he can continue to get refills on his seizure meds. Usually Dr. Veda just looks at me funny and says well, just keep doing whatever you're doing. I usually just tell him, I'm not doing anything but loving him and praying for him... that's all...

The only thing that worries me right now is the times he gets pneumonia. It's taking him longer and longer to get over the stuff. I think next time I'll take him to the pool. I need help keeping him active. Peopld don't understand what I mean by that but I just mean, rolling him every few minutes or moving him from one place to another at least every 45 minutes... He's getting heavier and heavier,, maybe we need to see the endochrinologist again? I am going to post an older post regarding siezures and you'll see for yourself that prayer does change things.

If you'd like to read the complete post, you can find them in the archives on the left.

2004
Ok, I've done everything I know to do and still no luck getting the myoclonics under control. Now we are dealing with myoclonics AND laughing seizures. The lamictal has not done anything to help. All I have been noticing is that the jerks were getting harder and now it's a mix of jerks and laughing siezures. I wanted to avoid the hospital as much as possible for our little man but the neuro says to bring him in for another EEG and then he can either up the lamictal more or add another seizure med. Im going to tell him that I don't want matthew like a Zombie. He said that a few of the jerks don't bother him so I am much willing to deal with a few of the jerks than having him totally zonked out all day and night. That's no way for a little boy to have to live. What little bit we can do with him is out of the picture if he is sleeping all the time. THat also leaves room for him to get sick and possibly,,,
2005
Matthew is doing great. Only has seizure whenever he falls asleep. Maybe two a day . He gaining weight again. That vacation was a much needed one. We have not been ANYWHERE in three years, except for maybe a weekend getaway. I realized when I was watching the videos that we sure had a lot more fun that what I thought I did. I also realized that you couldn't pay me a million dollars to be doing anything else at this time in our lives. It's rough sometimes and we just barely get by but God always makes a way for us, like he did when we went on our vacation.

Graduation Inspiration

2008-10-05T19:54:00.000-07:00

I graduated May 16-08 with TWO Applied Science Degrees. One in Accounting Technology and one in Business Office Technology. Matthew was my Graduation Inspiration. Any time I thought of quitting or noot going back the next semester I would remember I was doing this for Me but mostly for him. God gave me a perfectly formed brain and I need to fill it up and learn everything I can, while I still can. I started this week working on a Bachelors Degree through the University of Phoenix Online. Business Information Systems with emphasis in Networking and Communications. After I get this degree, I will hopefully get a job in TN making enough money to pay a good nurse for Matthew and so I can finally have insurance and put back for retirement. I'm going to owe a lot in student loans but it will be worth it. It's not like Im the first person in the world that went into debt to get a degree so why not? Life it too short to sit around holding your hand out, waiting for something great to fall into your hands. I've learned it aint so in my case. If I want something, I have to run after it! Matthew has a lot to do with that attitude too!

Poem/song I wrote 2005

2008-10-03T18:24:00.000-07:00

No Matter What You'll Never Do

One fall night while Singing at a church outside of town
We'd sang the last song of the night so decided to sit down
Next to me sat this man, you could tell was up in years
In his lap, a blonde haired, blue eyed boy, he must has been 16 years

I knew he was a "special" boy you could see the handicap
He daddy kissed him on his head and had held his hands to help him clap
He saw me as I was staring, my face must have turned real red
I heard him whisper in the little boys ears, and this is what he said.

Chorus.
No matter how big you get or how tall you grow to be
I'll still hold you in my arms and let you sleep right next to me
No matter how tired my arms get, This one promise will stay true
You'll always be my baby boy
No matter what you'll never do.

I held my new grandson a few months later on a february day
ten little fingers, ten little toes, he was perfect in every way
But soon we'd hear the news, we had a "special" little boy
The families cried and prayed every single day and tried to hang on to their joy
They said that he may never walk or never even crawl
But the only thing that I could hear was what that daddy said last fall

Repeat Chorus

Tag:

Gods sends Angels to help us a long the way, If we'll just listen to our hearts we can hear our Father say:

Final Chorus
No matter how big you get
or how tall you grow to be
I'll still hold you in my arms
And in your valley's I will be
My arms were always been open
And My promise still rings true
You'll always be my children
Don't matter what you'll never do.

Repeat Chorus

We're Back!

2008-10-03T17:47:00.000-07:00

Were Back!!

Sorry it's been so long since I've posted to the site. I guess I got off track. I found more important things I wanted to do. Since I last posted here, I have gotten two Associates of Applied Science degrees! I am working on my bachelors now. Matthew is 6 years old and doing just great. I can't even remember the last seizure he had. Probably six months ago.

So many things have happened. I have updates on my myspace page that I have been using. I wanted to come back to his old site and keep it going. I started this right after we got his diagnosis so I am going to keep it going... hopefully I wont get off track again...

Since I last posted, my son has been to Iraq twice and has safely returned home without a scratch. He is stationed at Camp Lejeune. He also got married last year before his second deployment to a girl he's known all his life but never even dated until he got home the first time.

Matthew is about about 3 1/3 feet tall. Weighs 52 lbs. He is beautiful. He's still not talking, walking or crawling but is adjusting fine to the world around him. He is in first grade and loves school. He doesn't go everyday but almost!

I was a grandma again on July 4th 2007 to Makenna Fay, Matthew's mom had another baby. She is SO smart it is scary!!! I am not kidding. She lives in TN so I don't get to see her that much. She loves Matthew. That's her in the picture. They are napping together.

I lost 50 lbs!!! I quit smoking,, been over a year now. I can JOG AND RUN! It feels great! I am currently looking for a job. Since Matthew's in school, I thought I would try to get a job.
Well, that's all for now. I don't want to burn myself out the first time I get back on! OH YEA,, I would have been on a lot sooner but I lost my sign on ID AND Password!.. The service changed owners and couldn't find it for me but they finally sent it to me today.!
TTYT

A Video and Can a child be born a Marine?

2006-08-03T18:56:00.000-07:00

Here's a video I made late one night. I have been worried every since the day my son left for Iraq. I picked up my bible and here's what I found. I didn't know worrying was a sin? It can be. It shows you don't have faith in God. I knew I should have faith in God but It's hard not to worry but I am trying really hard. I took two of my sons favorite songs and put them in a montage. The M&M song is the song that plays on my cellphone when he calls. I miss that ringtone so much!
Charlotte
PS Matthew is doing GREAT.

Can a child be “born” a US Marine? Yes, they can.

I put this together to share with my son,, any my Marine Mom Friends.

I raised him alone until he was 8 years old and he’d been through a lot but I never had one ounce of trouble with him. He has always been “one of few”. It’s strange how when I look back how these qualities were “born” into him. I certainly don’t think I instilled these in him, because I wasn’t that great of a mother.. I worked ALL the time and wasn’t there for him that much. But he was a little soldier even before he could walk.. .
I’m bragging on him but I have others children that are completely opposite and in between. lol

It’s like I had no control over his future. God already had it planned out for him.
I can remember us not having enough money for a new bike but he found an old bike that had no back wheel on it. (He was three) He would push that bike around and around the yard and would stop every 5 minutes to pull the grass out of the back part of the bike. Finally when I was able to get him a bike, it was used and had no training wheels. He was riding that bike within 15 minutes, no training wheels, age three. Lol By the next month, he was riding his sisters old 10 speed bike, his feet barely touched the pedals.. That was a funny sight. He never ever cried when getting shots, even as a newborn,, he face would just turn really red and that was it. Lol He would carry his younger brothers huge diaper bag up two flights of stairs to our apartment at 3 and 4 am after I had gotten off work.. because he insisted, half asleep, to carry them for me. Lol I’m just thinking about him, NOT worrying because I really know that God has a plan and he’s working it out now. I just needed to take a look back and review his childhood to see it. I am so proud of him and have always been.

Born a Marine.

It’s two am and no ones here to see, as I cling to a picture of a man very precious to me.
Radiant eyes of blue and hair of gold, the same serious smile since he was two years old.
Even then I knew his future would be grand, he would be one of few, not just any young man.
I was shown honor and respect, when he was only age three, because he’d always insist on carrying everything for his little brother and me.
He showed courage by never crying when had to get his shots, for a small child, that really says a lot.
He was determined and committed at only age three he’d taught himself to ride a bike without any help from me.

Now if I'd just paid more attention, I'm sure I would have seen, that my little boy Josh, was born A United States Marine….

Charlotte K

Easter 2006

2006-04-17T17:20:00.000-07:00

Happy Easter! We are blessed once again to celebrate a 5th Easter with our little odyssey, Matthew!

Another Angel Gets Her Wings

2006-04-13T14:00:00.000-07:00

In Loving Memory
of
Madison Paige Taylor
To my Mommy Lori ......

My time with you was much too short. I had to leave too soon,I wove my way withinyour hearts,and in all your hopes and dreams,until the very purest love became my tiny wings.Although I could not stay with you, I knew right from the start,That once you felt this Angels love, you'd keep me forever in your hearts.Im just a little Angel now, but my time was not in vain.As the dark clouds that surround you will give way unto the sun,My precious mommy, you will see that very soon again your heart will sing,If only for the moment it was brushed by my Angel Wings. Lori, I thought this song was "fit" just for you. Madison was everything she could be just because you loved her so much. Still, Madison was a Miracle..all because of your love
.Charlotte and Matthew>

Penny Riding Shadow..

2006-04-08T17:40:00.000-07:00

Shadow, matthew's dog was following us around with several other little dogs while we were riding matthew. I put Shadow on and to my surprise, he stayed on. Shadow is a stray dog my s son brought home. She's part something and part Yorki. He looks like Toto on Wizard of Oz. We call him shadow because everywhere Matthew and I go, including to the bathroom, he's right there with us.

Meet Penny, Matthew's Minature Horse

2006-04-01T19:40:00.000-08:00

Meet Penny.
We picked her up yesterday. Matthew was able to ride her today. She was rambunctous at first but we used Matthew's cousins as "guinea pigs" before we put him on. Ha. No problem. She did really good and was really gentle. I was going to post that he had NO sieuzres today but he just had one a few minutes ago but it was not nearly as bad and it was only ONE. Wonder if there is a connection? Matthew's had 3 or 4 siezures a day for the past six months and only one today! Penny is 4 years old. Believe or not, we purchased her at a garage sale! We actually made the deal to buy her two weeks ago, so we had time to think about it. I think we made a good investment. Matthew is happy when he's on her and it's good exersize for me because Matthew likes to go fast and of course, I'm right there with him, holding him on the horse running and breathing hard. ha.
I'm going to bed early because of daylight savings time. I don't do well missing an hours sleep!!!
charlotte

Are You Searching?

2006-03-24T20:06:00.000-08:00

I was just looking through Matthew's website and through the pictures and thinking to myself that even though Matthew is a special child, I am having a wonderful, fulfilling life. People walk around and are searching here and there trying to fulfill themselves in many different ways. Some don't even know what they are looking for. It's just an emptiness they feel and they don't know how to fill it. The first way I was able to fulfill the emptiness was to turn my life back over to Christ. It was like everything I had been searching for was there all along. I was blessed with the position of a Sunday School teacher. That's really fulfilling. You teach the kids what you know. You try to use your life as an example and show and teach them how to live life without having to waist there life searching. Searching can mean, drugs, partying, and all kinds of bad stuff if you arn't careful. All I can do is tell them and they have to find out for there own sometimes but they always know where to find what they are looking for if they remember what "Mrs. Charlotte" said.

The most fulfilling part of my life is going on right now. I have felt every single emotion there is during the past four years. Hurt, Anger, Frustration, Joy, Victory, Tears, Sorrow,, you name it, I've felt it. Not many people can say that. Most of them have been happy times believe it or not. I have learned to celebrate even the tiniest little milestones with Matthew. Things that I used to take for granted are not there any more. I don't take my family or anyone for granted, especially Matthew.

Matthew has touched not only my life but a few others. Some were touched at first but slowly "got used" to the fact that Matthew was the way he is and they were not "touched" anymore. Some, like me, just never get over it and every single day is a day that I look forward to learning from Him. He is Angelic and I feel that what I am learning is coming from God, through Matthew. In the mornings, when he wakes up smiling, I can see God's Love shining all over his face. He's telling me that "He's okay" even though he can't do what other boys his age do, but he's okay. He's here for other reasons.

Matthew has recently been dealing with my younger son's heart. I guess if finally got to him and he woke up. Anyway, for the last few weeks, I have had a "different" son. He says when he looks at Matthew it makes him want to do better things with his life. I have a bad habit of telling him that YOU have a perfectly NORMAL brain,, would you please use it quit damaging it and messing up your life. Finally, Thank God, it sank in.

If Matthew doesn't touch but One persons life and that person makes a totally transformation because of Matthew, then that's good enough for me and I'm so glad that it could possibly be my son. But, some people just get "emotional" when they think about all that Matthew has wrong with them, then they try to do better, then they give up and "get used" to things again. Some even blame others, including God for Matthew's condition but that's not what Matthew is here for. He has bigger plans.

I don't know why I'm feeling this way. I guess just looking at all the pictures. I am kind of sad tonight because Matthew' seizures have increased to about three tonic/clonic seizures a day. He's almost over the pneumonia but the seizures have not decreased.

If anyone reading this wants to put there money to good use, I have two things I would like to try with Matthew that are remarkable when it comes to seizure control and muscle control.
I dream of one day being able to take him to the Institute in Chicago for a complete detox of all the meds he is on and began using their program. The other program is ABR therapy . A new approach to physical therapy. I have their case study tapes and it will shock you to see before and after pictures. The cost for both programs is about 20,000 There is also hyperbaric treatments available that we can't afford. Not sure of the cost but it's not as much as the other stuff. If you have that much pocket change, please send me and email. lol
I would like to feel that I gave him every chance of having a normal, painfree life while he's here with us. We've had fundraisers before but could never seem to raise nearly enough.

If Matthew could get off all those seizure drugs, we would see a completely different child. There's a spunky little spitfire in there just waiting to get out but can't because he has to stay so doped up with sieuzure meds. The Institute in Chicago used different diets to keep the seizures down. It works for a lot of kids. It's even known to increase vision!

I better check on him now. He's sleeps so sound after he gets all his meds. The siezures he has makes his heart race and I'm worried all the time about that because if they don't slack up soon, it will mean more siezure meds. So Keep him in your prayers.

God's sends Angels, to help us along the way. If we'll just listen closely to our hearts, we can hear our Father say..... (This is part of the chorus to the song I wrote)
So if you are "searching" search no more! Stop and Listen to What Your FATHER is trying to tell you. Listen to the Night, Search every smile, Look closely in the eyes of a special needs child. Turn of the TV, the stereo and the lights, Hear what God needs to tell you tonight
Charlotte

Charlotte

Now He has Pneumonia! Poor Baby!

2006-03-16T18:01:00.000-08:00

It was inevitable. He strangled last Friday right before coming into the recovery room. I didn't want to say "OK Now, he's got Pneumonia" but I knew in my heart he did. It took a few days to actually show up but on Tuesday night he started running fever and doing the "barking" cough. We took him to a different doctor because his regular Ped wasn't in . Good Thing. This doctor said that even though you can't hear it in his lungs, doesn't mean he doesn't have it so she sent us for an xray. He had it in both lungs at the bottom lobes and in the left pareital lobe. She gave him a shot and antibiotics. He's at home and is doing good right now.

The thing that gets me it his regular pediatrician is totally different when it comes to treating him. We'll go to see her because he's barking and running a low temp. She'll say. Well, I don't hear anthing in his chest so I'll just give you some antibiotics and you just keep giving the breathing treatments. Every single time we end up back at the clinic with even higher fever and this time she can hear congestion and sends us for an xray and sure enough, he has pneumonia. By this time the Pneumonia has gotten worse and he gets so weak and so sick and it takes him 8 or more days to completely get over it.

He's already acting like he feels better because we didn't have to wait and then go back for the shot. This is the same doctor that said "I don't see nothing" on the xray. I'd wait to see if he passes it before I did another surgery". I pin pointed the thing on the xray before she even looked at it. The surgeon had no problem with finding it just like I did. I don't understand her. Anyway.
the picture show the red spots matthew got on his face from strangling right after Or possible even during the surgery. It's hard to see on this pic but even now he still has them, especially under his eyes. It looks like freckles. This is a SURE sign of aspiration for Matthew but I didn't want to believe that it could happen again.

If we ever have to have another surgery, I am probably going to make many enemies.
Things will be done to MY specifications or they simply won't lay a hand on him... I'll go somewhere else.

Like a friend on the Loop says"
NEVER UNDERESTIMATE THE POWER OF A GRANDMOTHER!
Charlotte and Matthew

Here it is. I'm just glad it's OUT!

2006-03-10T17:17:00.000-08:00

Two inches long. The bumper part looks a little different than what he desribed to me the first time.. Maybe he forgot himself what it looked like.? It wouldn't surprise me. When they brought me in the recovery, Matthew faces was splotchy red and he had red spots (reticuli) on his eyelids and under his eyes. He was breathing funny and is "raspy" but they "say" it's in his throat and not his lungs. Anyway his face has cleared up and we are home. We are bouncing him around to get that stuff out of his throat. Obviously he strangled on either the anesthesia or he choked when they pulled it out of his throat. (Of course, he was suppose to be knocked out but I'll never know because I was not in there). I'm glad it's over. I am tired and so is matthew. I've got tons of housework and school work to catch up on.
I'm hoping and praing hard he doesn't have the beginnings of pneumonia. It's all too familair.
Charlotte

Matthews Xray and Ganny's Observations.

2006-03-08T14:52:00.000-08:00

#1 is the bumper of the old tube
#2 is the catheter that is attached to the bumper that held it in place before it was cut and slipped back into Matthew's stomach.
#3 is the balloon of the new mickey. It looks to me as if it's pushing against the old tube that fell in which is possible because he immediately put in the new one and filled the balloon.
Both #4's are part of the new mickey.

We are going tomorrow and the surgeon is going to take a look at the x-ray and we may have to get it removed endoscopically. I hate it but there's nothing else I can do about what happened. It was an accident and accident happen. I also think it is imperative that it be removed because if Ganny is right, it has not moved down at all since it fell in and it's possible it to embed in something and cause problems.
I'll let ya'll know soon if Dr. Ganny was correct or not but I don't think that surgeion will let me think I was right at all on the xray.
Charlotte

Still Waiting

2006-03-05T19:08:00.000-08:00

As I said in my last post.....
I took Matthew back to the GI doctor to have the Feeding Tube removed and for them to give him the mickey button. When the Resident clipped the catheter, he was suppose to pop it out of Matthew's stomach but it slipped and went in. The surgeon says "Oh that's okay, he'll pass it." "Kids swallow stuff all the time, it will pass".
Well tomorrow will be the sixth day. Matthew has had a bowel movedment everyday and I have carefully checked it to see if I saw anything and IT'S NOT THERE. I've got a feeling there's going to be a problem because nothing is ever simple. They knew I was upset when I left and HE said to call if I had any problems and I said, Oh you can bet I will.

I am taking him to doctor Fairchild tomorrow if she's there. If she's not there, I'm taking him to the emergencey room. This type of catheter has a "BUMBER" instead of a balloon. He says the bumper is about the size of a dime. It looks a lot bigger than that to me. The circled part is the part that stayed in his stomach. I'm not exactly sure how much of the catheter part went in. I do know that about an inch was was sticking out and that's what the resident had clamped when it came out of the clamp. (Sure glad he's not a heart surgeon.) He sure acted like it was a big deal because she said SHIIIIIIIIIII but didn't finish. That's when our surgeon said it was okay.
Well, we'll just see about that tomorrow. If this has happend to you please let me know and let me know if everything was ok or not.
Charlotte

Don't Matter What You Never Do , By Ganny Charlotte

2006-03-02T13:47:00.000-08:00

We recorded a rough copy of the song Don't Matter What You Never Do today. This is just a copy that we are sending to Memphis for Canala Sound Studios to listen too. They are going to put some better music with it and help me with the words and then it will be recorded professionally in a few months. We are putting other songs (my mom and I) that we wrote.
I'll take any comments or suggestions that you are willing to give me.

Matthew got his mickey today. THEY HURT HIM! Matthew didn't cry but I could tell he was in pain. They also let the end of the catheter slip into his stomach but they said it was NO problem because he would "pass" it. I'll believe it when I see it and I better see it TOMORROW. I gave hims some Milk of Mag to hurry it out. He is a big boy. He has so much courage. I wish I was half as strong as he is when it comes to pain and things like that. He is my little Hero! He's doing better since we left the clinic. We were suppose to get bloodwork but I said NO because he had been through enough for one day and we left. The doctor was trying to tell me that, oh it's not painful but I know Matthew and I KNOW he was in pain. He pulled his arms up tight and his face turned really red. I thought he was having a siezure.
Anyway. I got school work to do. I 've been tied up with Medicaid and doctor appointments and getting this song recorded. I'll let everyone know if we are denied for physical therapy on Friday. That's the last day of the appeal. I got all our stuff in to them on time so I should hear something back soon.
Charlotte

MS Medcaid Say No more Therapy for Matthew, Well we'll just see about that!

2006-03-01T18:48:00.000-08:00

I'm in limbo. Even though the therapist and doctor sent letters and prescriptions stating his progression, Medicaid says NO? Of course, I have appealed. I have three days to prove his has progressed. That's no problem. I have it ALL on video tape. I also got yet ANOTHER prescription from another doctors saying he needed physical therapy THREE times a week.
If they say no this time we'll be on our way to Haley Barbours House. (Like that would do anygood.) Ms is a mess , like I've been saying and Katrina didn't help us a bit. This state is rapidly getting worse. I'll know Friday what Medicaid decides after getting the new prescriptions and the links to the videos and another letter from the therapist. I had to drop everything to get this stuff together and make phone calls. I've not done any school work all day and that's not good because I have another test next tuesday but it doesn't matter. Matthew has always came first and he always will. Here's my NICE letter. The next one won't be nice if we are denied again.
Charlotte

To: The Vicksburg Post.
I am writing this on behalf of my grandson. He is four years old and has severe Cerebral Palsy. Maybe Medicaid and everyone else involved can understand better why kids with CP need physical therapy even though most will never walk or even crawl. Maybe this will help them understand. I was wondering if this be put in the paper somewhere? If it's too long for letter to the editor, I can revise it.
People need to know how severely handicapped children (including the elderly)
are being denied medical services that they deserve and have paid for with their tax dollars. It's probably just another Medicaid problem to some it could mean life of pain or death to the handicapped children in Mississippi. Sometimes I think that not one Senator, Representative or Governor has even had the priveledge of knowing a handicapped child, much less having one of their own. If they did, things would be much different when it came to Medical services for our handicapped children.
Charlotte Kappler

Just Because we may never walk, doesn't mean we don't need Physical Therapy.

My name is Matthew Sanderson. I am four years old. I have 4 different brain malformations. I was not supposed to live more than two years according to my neurologist. Because my brain is malformed, I cannot walk or crawl unassisted. I can walk in a walker and sometimes I can run on my special treadmill I got for Christmas if I am in my walker. I don’t have balance but my walker holds me up so I can walk. I am blind too but I know people by their voice and smell. I’m not totally blind like they thought I was because I have some peripheral vision. I know what people are saying to me but because of my brain malformation, I can only respond by shaking my head yes or with a big smile on my face. I am a person, even though I can't do the things a "normal" person can do.

I have been getting physical therapy since I was 6 months old. At first, I couldn’t even bear much weight on my feet but since my surgery last year, on my hips, I am able to walk in my walker much better than I could before. Sometimes I don’t feel much like walking because I have seizures that the doctors say will never go away but there are lots of times, I feel good and like to walk in my walker.

Because of my brain malformations, I also have what the doctors call Spasticity. That means my muscles are very tight, especially in my legs. Before my surgery my legs used to scissor and hurt real bad and they came out of the sockets. A person that has had a stroke can tell you how that feels to be lying in bed and have their arm or leg suddenly draw up really tight. My brain makes my legs draw up or scissor and I have to have physical therapy to keep them from getting like they were before the surgery. My brain will always make my legs do that and it’s nothing that can be fixed but without physical therapy, my legs can come out of the sockets again and it is very painful for me.

Today my grandma told me that Medicaid denied me physical therapy because I was not showing any progress. Grandma had to quit work to take care of me so I have to be on Medicaid for my insurance. I have worked really hard to get to where I am today.
If the doctors are right, I won’t be here very much longer, even though I am doing very well right now. Why not help me with what I need while I am here? I just want my legs to feel better so I don’t have to have that surgery again. My handicapped friends are being denied too for their physical therapy and it’s just not fair. My therapist and my doctor both say I have progressed a lot more than they ever thought I would. Most of my friends have some type of brain malformation and their legs hurt too when they don’t get the physical therapy. My grandma is doing therapy on my legs until we see if Medicaid will watch some videos showing my progression. Some of my friends parents work and don’t have time that is needed to do the therapy that my friends need to keep their legs from hurting.

Isn’t there some other program that could be cut instead of the therapy for my handicapped friends and me? Some of my friends can’t do as much as I can. One of my friends can barely move at all but her legs hurt too when she doesn't get physical therapy.
Love,
Matthew Sanderson
P.S.
I have videos showing my progression on my website at
http://www.littleoddyssey.blogspot.com

Birthday Pictures

2006-02-20T21:27:00.000-08:00

Matthew got babyfood,babylax,several nice outfits,toys, a cow that sings and dances to achy breaky heart and 310.00 cash! We are going to Shriners' in Shreveport for a check up and to get more thumb splints and afo's. I'm also going to see about getting those plates and screws taken out of his hips. It's time for them to come out, especially since he has grown so much taller they are beginning to bother him.. I have a midterm tomorrow and we are leaving afterwards to go to shreveport. The small b&w pic above was taken at Griz's Studio's when Matthew was two. Here's a new one we took together last week. Our Birthday is only 6 days apart, so we take them together, but of course, here's one of him by himself and another one of him FUSSING at me because I was holding his hand out of his mouth!

Guess who came all the way from Camp Lejeune NC for the weekend? Yep, PFC Josh Pugh. (My Son) He was able to go to Matthew's party. He bought Matthew a lot of stuff for his birthday!

Guess Who's Turning FOUR? NEW PICS!

2006-02-13T17:22:00.000-08:00

I thought I would go ahead and update Matthew's website before his birthday. I've been busy with my classes but I didn't want to be late to have a Birthday Blog!
We took some pics but they were'nt ready so I used some that I took.

A Poem for Matthew By Ganny Charlotte

In 2003 we celebrated with jubilee. I was so happy that you were still with me. In 2004 it was number two. I thanked God for another year with you. In 2005 you made it to "3". Only God know the answers and only the Plan, He can see. In 2006 we'll do it once more. With Gods love and prayers, you are about to turn four. I'll add to this poem, each and every year Because only God can say how long you'll be here. Love Ganny

Puppies for Sale and Remembering My "Strays" and New Pictures!

2006-02-10T20:41:00.000-08:00

Here's a CLEAR idea of how I freaked out when I woke up to find my baby's arms swollen up! (The IV came out and filled his arm up) It took 8 hours for it to go down!!! If you ever have to get an IV, always check for puffiness!!! This happened while we were asleep!

Here a pic I took of Matthew Medical File. This is ONLY from neurology.

Puppies for sale !! (My sister sent me this.)
Let me tell you this, then you can read the poem. lol
It reminds me of myself when I was a little girl. I loved animals (and still do!) Most of the pets I brought home were stray dogs and cats. Some were beautiful and some were so very pitiful looking. My mom even compares my ex-husband to me "pickin up another stray". lol It didn't matter if they had all four legs or no legs at all! I remember finding a bird nest that fell from a tree with baby birds. I dropper fed those birds until they died. lol I remember having a miniature collie. (another stray that came up) . We were walking down the road and a car ran over it. It was crying and not moving but he was alert and his eyes were open. I took him home and put him in a box beside my bed. I don't recall making him eat or giving him any medicine but I do remember praying for him A LOT. He layed around for about two days and I woke up one morning and he was walking around and had a full recovery .. It could have been prayer or maybe the fact that our preacher's wife was the one that ran over him. She did a lot of praying too!

When I was 10 years old I probably had 5 dogs,, all strays. We didn't have much money and mom was "sick" of all them strays messing up her yard and getting into the garbage..We didn't have a Humane Society so the "humane" thing to do back then was take them to another part of town and drop them off! Without me knowing anything about it, Mom took them all the way from Chickasaw Subdivision to downtown vickburg. I think she was heading for the City Pound but they were closed so she just booted them out.

I walked around for days wondering where the heck my pets were! I especially missed my GREAT BIG WHITE MUTT SnowBall. About the size of Saint Benard! When I brought him home, I told mom that the guy down the street said I could have him and he was a few weeks old. He also said that it was a poodle! I used to take hours to cut his hair.. He looked a scary site when I got through with him. I had to cut his hair because we had a cuckaburrow patch in a field across from our house... ANYWAY...
A few WEEKS later we decided to go to town. We got to Fred's Dollar store. As we are loading up the car, guess who should appear? I turned to get into the car and I saw him running toward me as fast as he could.. I couldn't believe my eyes. It was SnowBall!! I told mom that it was a miracle that we found him!! I'll never forget the surprise look on her face! She let him come back home with us but I can't recall what happened to him after that. He probably was ran over by an 18 wheeler because they did a lot of logging on our street and those truckers didn't stop for nobody, especially for a dog.

Except for one time. lol
I had a black chiuauauauau?? He was mixed with "something". I think this was my mom's dog because we took better care of him. I jumped off the porch and landed on this poor dog's leg and broke it right into! He was lucky because we had the money to take him to the vet. We brought him home and he had an white splint on his leg. It looked like a real human leg cast. It was longer than his other legs so he walked really funny. You know, up and down up and down.

To his "bad luck" he ran out to the mailbox for the last time. We called him and called him. I saw the logging truck coming. I just closed my eyes and yelled for mom!! It was too late. I heard the truck slam on his breaks AFTER he had ran over and killed our dog. He grinded gears and backed up about 500 feet. He got out and saw me standing there over the dog. He looked at the dog and said . "What the $#%^ is that on his leg??" I said, it's a cast. It's broke.
He said, Oh, okay. I was just wondering what the $%$%^ that was on his leg. And he left.
No sorry, no nuttin!!!
Anyway.. I could go on and on about dog and cat stories but I'll save them for later.
The next one will be called, The Bloody Bustop.. Involves a Catahoula Curr dog and a Log Truck. It's funny now, but it wasn't then!

HERES YOUR STORY FINALLY

A farmer had some puppies he needed to sell. He painted a sign advertising the 4 pups. And set about nailing it to a post on the edge of his yard. As he was driving the last nail into the post, he felt a tug on his overalls. He looked down into the eyes of little boy. "Mister," he said, "I want to buy one of your puppies." "Well," said the farmer, as he rubbed the sweat off the back of his neck, "These puppies come from fine parents and cost a good deal of money." The boy dropped his head for a moment. Then reaching deep into his pocket,> he pulled out a handful of change and held it up to the farmer. "I've got thirty-nine cents. Is that enough to take a look?" "Sure," said the farmer. And with that he let out a whistle.

"Here, Dolly!" he called. Out from the doghouse and down the ramp ran Dolly followed by four little balls of fur. The little boy pressed his face against the chain link fence. His eyes danced with delight. As the dogs made their way to the fence, the little boy noticed something else stirring inside the doghouse. Slowly another little ball appeared, this one noticeably smaller. Down the ramp it slid. Then in a somewhat awkward manner, the little pup began hobbling toward the others, doing its best to catch up...."I want that one," the little boy said, pointing to the runt.

The farmer knelt down at the boy's side and said, "Son, you don't want that puppy. He will never be able to run and play with you like these other dogs would." With that the little boy stepped back from the fence, reached down, and began rolling up one leg of his trousers. In doing so he revealed a steel brace running down both sides of his leg attaching itself to a specially made shoe. Looking back up at the farmer, he said, "You see sir, I don't run too well myself, and he will need someone who understands." With tears in his eyes, farmer reached down and picked up the little pup. Holding it arefully handed it to the little boy. "How much?" asked the little boy. "No charge," answered the farmer, "There's no charge for love."

The world is full of people who need someone who understands.

Matthew's Feeding Tube Surgery (A Success)

2006-01-31T09:48:00.000-08:00

Here's a picture to show you how skinny Matthew is before surgery. You can see his ribs. This picture was taken a year ago and I don't have a recent pic that shows his belly but just imagine, he weight 27 lbs in the picture and was 33 inches tall. Now, before surgery he is 28 lbs and 36 inches tall.. He looks much thinner than this picture.

The day before surgery they put an IV in his arm. We went to bed and I had been getting up to roll him over several times but this time I just sat straight up in bed. I thought I had a dream or something. I reached over to turn him over and when I felt his arm I "freaked"! I flipped the light switch on because something didn't feel right when I touched his arm. I looked and it was three, maybe four times it's normal size!!! I woke mom up and told her and she's Like', yea that happens when the IV comes out of the vain... I never knew it could happen. lol It looked horrible! I called the nurse and they took it out was going to put it in another place. I told them I think they could wait for a few hours because He's probably in enough pain (but he seemed ok). Mom said it was painful for a little while. It finally went down about 8 hours later.

Here's a pic after surgery. It looks bigger in the pic. The round stopper is about the size of a quarter. The long tube will be replaced by MIKEY BUTTON IN EIGHT WEEKS.

iT LEAKS A LITTLE but I keep it clean with soap & water. The whole is only as big around as the tube.

At first it was stressfull for me to give the first feeding after we were home. "Someone" was trying to tell me how to do it when "that someone" wasn't even there when they showed me how. lol Luckily I didn't listen cuz he was
wrooooooooooooooooooonnnnnnnnnggg! lol He knows who he is. Anyway after pouring milk and tylenol all over me and matthew I stopped to "gain my composure" I was really nervous. I tried again in a few minutes with NO ONE around and did it! Now I can feed and give meds with very little light if I have to after only one week!

Aunt Grace sent Matthew Balloons from PA! Thanks aunt Grace!

Well, it's been almost a week since surger. Matthew was sore the first few days and is still picky about moving his tube but he has not cried or been in a lot of pain.
I can get his food down him and meds within 30 minutes now. If I don't think he's had enough during the day, I can sneak in his room and give him an extra feeding without even waking him up.

Even his seizures are less. He had NONe during the day unless he takes a nap and for the first time in months, he took a nap and didn't have a siezure. He has skipped on night where he didn't have a seizure before going to bed for the night.

I am confident I made the right decision and it was the HARDEST I ever made. To me it was just another confirmations that matthew will never be normal.. But when it comes to keeping him with me longer, it doesn't matter. I have learned to accept his disablities one disability at a time, one day at a time. This surgery was no worse, for Matthew, than getting tubes put in his ears. It was very easy for him. It may not be easy for every child but it was for Matthew and I am so glad! It was nothing compared to his hip surgery. (that was a rough surgery)
Well, we are going to town and just fool around alittle while.
Charlotte

2006-01-19T18:45:00.000-08:00

Sanctity of Life Week

2006-01-16T09:23:00.000-08:00

Pro-Life Issues
Life: a miraculous gift
By Pat Centner
AFA Journal, January, 2003 edition

Even after six years, Ginger Millermon’s voice still choked with emotion as she told radio listeners nationwide of her infant son Jarrott’s struggle for life, and of the way God had used that struggle to teach Ginger and her husband, Joel, profound lessons in surrender and faith.

The Millermons had traveled from their home in Hutchinson, Kansas, to American Family Radio’s (AFR) headquarters in Tupelo, Mississippi, to tell Jarrott’s story on Today’s Issues and to promote Ginger’s new CD, First Breath, which features many of the soul-baring songs she has written as a result of her experiences. The couple had also come to the Tupelo area to present a musical concert for Sav-A-Life, an organization devoted to the sanctity of life.

This particular day was devoted to AFR and the AFA Journal, so Ginger, a petite young woman with brilliant blue eyes, prayed with Joel, and then donned a pair of studio earphones and began to tell her story.

It all began with Ginger’s second pregnancy. She noted that she and Joel had been thrilled at the prospect of giving their 18-month-old daughter, McKenzie, a new little brother or sister. However, in Ginger’s 29th week of pregnancy, she began having contractions and was rushed to the hospital in Delta, Colorado, near their hometown of Paonia. Doctors determined the baby was in breach position, but were completely shocked when a sonogram revealed that Ginger was carrying not one, but two tiny boys in her womb.

“Those little boys wanted to come,” Ginger said, but it was dangerously early. She was immediately transferred to the hospital in Grand Junction, where desperate measures by physicians held the babies’ birth off for four days. It was still ten weeks before the actual due date. Had their birth not been delayed, Ginger said it is probable that neither of them would have lived. Instead, Jarrott and Brennan were delivered by emergency C-section on August 6, 1996, weighing in at 2 lbs. 14 oz. each. The twins’ birth marked the beginning of a time of testing and suffering that would change the Millermons’ lives forever.

A fragmented life
“When they’re born, premature babies’ lungs are usually very hard,” said Joel, “and both our boys were having severe breathing problems shortly after birth. They were given surfactant, a drug that lubricates the lungs, and Brennan responded within 24 hours. Jarrott didn’t. As a result, when he was four days old, Jarrott was flown to Children’s Hospital in Denver.

“I literally thought I would never see him again,” Ginger explained. “I couldn’t go to Denver because I’d had the C-section and was still very sore. So before they left, I went and stood over Jarrott’s bed. I literally couldn’t touch him because it would over-stimulate him and send him into respiratory distress. So I stood there and cried, and said ‘Bye, I love you.’”

After that, life was challenging, Joel said. Ginger returned to Paonia, but frequently had to take Brennan to Grand Junction with reflux and other problems. “With Jarrott in Denver and Brennan in Grand Junction, sometimes we wouldn’t see McKenzie for three weeks at a time,” mused Ginger. “She would go to my Mom’s in Kansas. She was a real trooper.”

Jarrott’s fight
From the beginning, doctors diagnosed Jarrott with a preemie lung disease, bronchial pulmonary dysplasia. “But it took quite a while for them to discover that he also had tracheal bronchial malacia – a disease in which the airways in the trachea and bronchi collapse,” commented Joel. A normal person’s trachea has ring-shaped cartilage that holds the airways open, but Jarrott’s did not. He continued to struggle.

“When he was about four months old, the doctors began to hint that Jarrott probably would not survive,” said Ginger. “But they just pulled out all the stops; it was kind of their last ditch effort to save his life.

“Shortly after, they called us into a care conference that I will never forget. We went into this room, and all the doctors and specialists were there. Everyone had tears in their eyes. The head doctor over the preemies shook her head and said through tears, ‘We have fought so hard for him, and there’s just nothing left to do.’”

Joel asked about a heart/lung transplant or other options, and was told, “It will take a miracle for Jarrott to survive.” The pulmonologist said, “There is no way this child can live with these lungs. And if he should happen to live by some miracle, he will have no quality of life. He will never walk or talk; he will never run and play. He will have cerebral palsy and be on a ventilator the rest of his life.”

Joel and Ginger were given the option of taking Jarrott off the ventilator and letting him go right then. The doctor said, “He’s going to die anyway, and it will be over for you guys. You’ve been under so much stress; and it’ll be over for him too.”

The other doctors also encouraged them to do this, but Joel and Ginger could not find peace. Since Jarrott still had active brain waves, the couple told the doctors they were going to continue to pray for a miracle.

“And we knew God could do that,” Ginger explained. “We also knew that God is sovereign, and after five months, we had finally come to a peace about letting Him take Jarrott if that was what He chose to do. The verse God used in my life at that time was one I’d known since high school – Psalm 46:10: ‘Be still and know that I am God.’ And that’s where Joel and I were. We needed to be still and allow God to do what was best for all our lives.”

From that experience, God led Ginger to write Be Still, one of the songs on her CD. Here are partial lyrics:

There are times in my life when I ask You “Why?”
When my sorrow runs deep and I start to weep,
When I’m lost and confused and I can’t find You,
And I wonder if You’re there.>
But if I’ll be still, and know You are my God,
Your love will never fail, and Your faithfulness is true,
And if I’ll only be still, and seek You once again,
Your strength will be my own when I am at my end,
If I will be still, just be still.

“After that conference, we literally were waiting for Jarrott’s last breath,” continued Ginger. “Then God reminded us of James 5 where it says, ‘If any among you is sick, have the elders come and pray over him.’ My dad, Joel’s dad and Joel were elders, so they prayed over Jarrott, and we waited….

The answer
“It’s a complicated story, but after spending more than a year in the hospital, God did miraculously heal Jarrott,” said Ginger. “Today he’s six years old and runs and plays like all the other kids. He has no lung disease or cerebral palsy, and he can say his ABC’s forward and backwards. He’s an amazing little guy.”

Last year when Jarrott went for therapy at Johns Hopkins Hospital, one doctor looked at his chart and said, “This was God. There’s no other explanation. Jarrott should not have lived; it’s nothing that men did.”

A commitment to life
The Millermons are completely committed to the pro-life cause as a result of their own struggles surrounding Jarrott’s life. Ginger explained: “I think the whole issue of the doctors confronting us and telling us Jarrott would have no quality of life and that we should let him go, and then watching God heal him, is the same issue we’re confronting in the pro-life arena, and that is, every life is to be cherished, from the moment of conception on. Life is a precious, miraculous gift from God.”

Today, a vital part of Ginger’s music ministry is serving pro-life organizations across the country. She wrote First Breath for the Open Door Pregnancy Care Center in Hutchinson, Kansas. The song’s lyrics reflect the cry of the unborn child:

Mommy, give me a chance to say I love you,
To hear you singing a lullaby,
Holding me close when I need
to cry.
Mommy, give me a chance to hear your laughter,
Watching me as I giggle and coo,
Taking my first steps to Daddy or you,
There are so many things that I want to do.
Give me my first breath.

For I am fearfully and wonderfully made, fashioned by God’s hand.
My days were written in His book long before time began…
Give me my first breath.

More Links to check out:http://www.nevadalife.org/sanctity_of_human_life_week.htm

The Millermons present their concert ministry for churches, banquets and other venues. For information, or to obtain a copy of First Breath, call them at 620-665-3015; write them at Anothen Music, P.O. Box 624, Hutchinson, KS 67504; go online at gingermillermon.com; or email info@gingermillermon.com.

Stephen's Homecoming Video

2006-01-13T17:58:00.000-08:00

My Sunday School kids and I have been writing a fellow church member letters while he was in Iraq for the past six months. He came home last monday. I felt like I needed to arrange something for his Homecoming. Our church and his family gave him a "going away" party but I thought we should surprise him with a big "Welcome Home" party. We made banners (one was about twelve feet long" and put it at the beginning of our drive. HE lives across the street from us. We had a Sheriff's deputy pull them over on the highway before you get to our drive. He was very surprised. He got out to see what was up with the Deputy, then he saw all the kids from our church and his family running toward him with flags! We had ballooons down the drive with the posters. I just wanted him to know how much we appreciate him "almost' sacrafising his life for our freedom and for our protection from terrorist! I also had our local newspaper stop by. They were happy to take some pics and put him on the front page of our local paper..
It didn't seem like a lot but hopefully he knows how much we appreciate him putting his life on the line. He was willing to die, no questions asked. Some people may not understand but if you have a someone close to you in the Military, you understand.

Can't Afford a Gait Trainer? Here's an Idea

2006-01-12T09:38:00.000-08:00

Can't afford a light gait trainer??We can't either!

If you have a walker that just happens to fit on the edges of treadmill, then you are in business!
A neighbor gave us a small, very lightweight treadmill. It folds up when we are finished using it.
I lock all the wheels first. The sides of his walker are clamped down with a two big clamps. Bought at walmart.
Sometimes he wants to just sit on the bar and be lazy but I fixed that by taking the sitting bar out of his walker.

You also need this to keep from injuring your back.
This is just an old computer desk chair with the back off of it.

Sometimes Matthew will walk on his own, sometimes he needs help getting his legs going. I just push behind his need one then the other. Even if your child doesn't do the walking simulation on his own, it's a good way to make new brain waves even if you have to sit there and push his legs and do the walking for him. Matthew is so funny on it. Some days he will just sit and be "lifeless". Somedays, I can turn the treadmill on high and you should see him run.. He'll have his eyes wide open, his head bobbing and his facial expression is like he's working really really hard!

If you don't have a walker, you can try to a MERRY MUSCLE JUMPER This and just hand it over the treadmill.

They will special order one for your childs size. http://kidalog.net

I wouldn't suggest leaving them in there unattended for even a second.!

I don't know what type of walkers you have but if you are planning to purchase on, I would keep in mind that you may want to use it on a treadmill.

You got Something to SAY? Say it on a TSHIRT!

2006-01-11T12:14:00.000-08:00

Here are some samples of some T Shirts I made for Matthew. I think Matthew likes his USMC T shirt the best!

I get so irritated when people say "Oh, He's sooooo sleepy!!! (Especially when he's WIDE AWAKE!) I think this T shirt will fix that! I even added his web site address on his T Shirt!

And Finally a T Shirt to get back at all the people that STARE at Matthew. It's one thing to STARE and smile,, that's okay but To STARE AND wrinkle you nose or to STARE and STARE without speaking to him... Here's one for you..

If you have something to Say and a pic to go with it, I'll be glad to make you a Tshirt.
Black and White print is 15.00 and Color is 25.00 That includes a white Fruit of the Loom TSHirt and shipping (if you live in the US) If I get a lot of orders, Ink is very expensive!!! It also includes your website address if you have one.

Here are some other things I plan to put on a tshirt for Matthew.

WHATS WRONG WITH YOU????

I can HEAR better than YOU!

Don't Stare Long... Grandma's Watching you!

Normal people SCARE me!

What Happened to YOU?

I'm Perfect, You're NOT

God's Not Finished With Me Yet.

Grandma's Heart

My blonde hair and Blue eyes are REAL! Are Yours?

Just email me if you want a tshirt!

Charlotte

Another Angel Flying Too Close to the Ground Needs Prayers.

2006-01-08T16:40:00.000-08:00

The song you are hearing is Just for "Angel" and his family.

This is the Last message our group Received from a little boys mom on our Polymicrogyria Support Group. I didn't want to post their names because I have not heard from her to get permission. So we don't know if He's gotten his wings yet. Just keep him and family in prayers. We'll Just call him Angel for now.

I have sad news; Angel has deteriorated and our goal now is to keep him comfortable until the end. I will sign his DNR as soon as it's ready and we are making arrangements to have him home for one last Christmas. After Christmas, we will be going to a wonderful pallitive care facility to settle him and the we go home for the last time. I promised him he would die in my arms at home and I am keeping that promise.
I will try to keep you updated, thanks;
His Mom
Thank you for your thoughts on Angel. Tomorrow we are going to the pallitive care place to get everything arranged to take Angel home to pass away peacefully in my arms as I promised him. Wednesday, I had them remove the TPN feeding and within an hour, he was sleeping peacefully. We are better able to controll his pain now and he will be with the angels in less than a month. My heart is breaking, but Angel's needs are topmost in my heart and mind. I will not allow him to suffer a minute longer than necessary, that is my gift to him.

G Tube Surgery Journal

2006-01-06T08:36:00.001-08:00

January 6, 2006

We saw the doctor yesterday and Surgery is scheduled for the 24th. We have to be in on the 23rd for a PH probe to see how much if any acid reflux he has. If he has it he'll have to get his stomach wrapped to prevent acid reflux. The doctor didn't tell us one thing we didn't already know about the surgery. Me and mom just looked at eachother like yea, we knew that. lol The good thing is the surgery is done laproscopically. Only one tiny incision if he only needs the tube but 4 tiny incisions if he needs the reflux procedure. He still gets to eat by mouth if he want's too! I will continue to feed him a little by mouth every day if he's not sick, coughing or gagging. Hopefully he'll keep the ability to swallow but the doctor says that gets worse as they get older. I gotta go, got lots of stuff to do!
CHarlotte

2006-01-04T20:39:00.000-08:00

Hey,
I decided to start on My book. lol I mean, at least I got my 'Book Cover" ready. So here it is.
I will be starting on the inside really soon!

Doctor's Appt. Is tomorrow!

2006-01-04T18:12:00.000-08:00

Our Appt. is tomorrow at 10 with a gtube surgeon. I may have done too much research on this feeding tube. I feel like it's a good thing and will add more years to Matthew's life. But of course, I want them to tell me the Matthew NEEDS a feeding tube. I don't want to get it just to make things easier on me. I know the surgery is not going to be easy. I found out that most gtube surgeons do another procedure during the surgery. It's where they wrap the stomach... I forget what's it's called but it prevents reflux or gerd. I've heard a lot on the loop about kids with gerd and reflux but didn't realize that it was caused from the tube. Anyway.. I am going to try to get me a list of questions together for the doctor tomorrow. If I have ONE bad "feeling" about the doctor, we will definately find another one. I don't believe I HAVE to use whatever doctor I am referred too. I don't have to let them treat me like I am an idiot. Matthew's life will be in God's hands and the doctors hands but if the doctor doesn't "fit my expectations" we'll move on. I usually get these "feelings" about things and know if I am doing the right thing or not.

What really stinks is that I have been using up most of our days for the last few weeks trying to get enough food and drink down Matthew that he doesn't lose weight. This evening, he decides to eat a half of stage three baby food like a pro. I thought that this was great!!! Maybe he's getting his swallowing ability back.. But when I tried to give him the juice with his phenylbarb, he breathes funny and chokes. I guess I'm just looking for an excuse to change my mind. It actually will be up to me whether or not he gets a feeding tube.
Yea, I'm nervous already.
I was also wondering how I would go through with a surgery and take my online classes that start the 16 of this month? I guess I'll cross that road when I get to it. I can always withdraw and start again next semester. I'll post tomorow about the doctors visit.
Charlotte

Songs of Love

2006-01-03T19:04:00.000-08:00

Songs of Love

I decided to upload Matthew's personalized Song made by the Song's of Love organization. They did a wonderful job on the song. If you want to get your child their own personalized song please visit their site!

The Songs of Love Foundation, the only nonprofit organization of its kind, and to date has recruited a group of over 350 talented artists nationwide. Collaborating with over 300 hospitals, private health-care institutions, and with various individual families, they have produced intimate musical portraits(which are never duplicated) for thousands of children and teens.
Thanks Again, Songs of Love!
Charlotte

Happy New YEAR

2006-01-01T22:46:00.000-08:00

Happy New Years from The Kapplers!

May your Troubles in 2006 last as Long as
Your New Years Resolution!

I read that on the church bulletin board today. Anyway, Matthew is doing wonderful. He's very vocal lately. We have our appointment on Thursday with Doctor Islam. He's the one that does the gtube surgery.
I'm scared of the surgery but not of Matthew having the actual tube.
I know it's what's best for him. I am thankful for another year with my little Matthew. He brings joy and sunshine into our lives every day that he is here. Even when he's sick! He wakes up smiling and goes to bed smiling and laughing.. What more could I ask for?
Ganny and Matthew

New Guest Book

2006-01-01T21:05:00.000-08:00

You got a Question or Comment? I'll be glad to help you....

How to Know when it's time for a Feeding Tube

2005-12-29T20:26:00.001-08:00

I am doing lots of research on the feeding tube just to make sure this is what is going to help matthew. I want to do what is good for him and so far I am still going to see the surgeon for a consult next Thursday. Sorry it's not formated correctly but I don't have time to fix it.. lo. Maybe later. This happpened when I "Copied and Pasted" it....

Evaluating a Child for Gastrostomy Tube Placement
Athos Bousvaros, M.D., Dept. of Gastroenterology,
Children’s Hospital, Boston, MA
allergy, or incorrect preparation
of formula. In these
cases, treatment with the appropriate
formula or medication
may increase oral intake.
Unfortunately, only a few patients
have an easily correctable
cause of malnutrition.
2. Is the child safe to eat by
mouth?
Some children may not be
malnourished, but are referred
because of respiratory symptoms.
These children usually
have a neurologic disorder,
such as cerebral palsy or muscular
dystrophy. When they
eat or drink by mouth, food
enters not only the esophagus
and stomach, but also the
lungs (aspiration), and nasal
passages (naso-pharyngeal reflux).
Typically, these children
have been hospitalized
for pneumonia and may also
have recurrent "bronchitis",
"asthma" or "sinusitis".
The aspiration is usually
diagnosed with a test called a
"barium swallow" or
"modified barium swallow".
While the test may demonstrate
aspiration, the decision
to place a G-tube should not
be made on the basis of the
test alone, but rather based on
the child's symptoms. At this
point, I often consult with a
r e s p i r a t o r y s p e c i a l i s t
(pulmonologist) to determine
As a physician who specializes
in the care of children
with feeding difficulties and
other intestinal conditions, I
am often asked to determine
whether a gastrostomy (Gtube,
stomach feeding tube)
will help a child. Parents
often come to see me with
anxiety. Many parents view a
G-tube as a "necessary evil"
which may help their child
gain weight, but which may
also isolate their child from
other children, as well as
limit oral intake. In some
cases, I recommend a feeding
tube be placed promptly,
while in other cases I recommend
no tube at all. To help
me make this decision, I usually
ask these questions:
1. Is the child malnourished.
If so, why?
While special needs children
are all unique individuals
with different needs, they all
have one thing in common:
nutrition is essential for their
proper growth and development.
Malnourished children
are at risk for infections,
bone fractures, and anemia.
A malnourished child undergoing
a surgery has decreased
wound healing abilities
and may experience
more complications. In addition,
normal children who are
starved have slowed development;
therefore, while it is
not proven, refeeding malnourished
special needs children
may increase energy,
alertness, and possibly improve
development.
I usually determine malnutrition
by reviewing a child's
growth curve, seeing if the
weight is appropriate for
height, and examining them
carefully. Most blood tests
are normal except in very severe
malnutrition. Most of
the time, the baby's underlying
disease (cerebral palsy,
congenital heart disease, prematurity,
chronic lung disease,
etc.) is the only cause
of the poor growth. Babies
with cerebral palsy often
grow normally in the first six
months, but as they get older,
their suck and swallow may
not keep up with their needs,
and they stop gaining weight.
Babies with congenital heart
disease or lung disease feed
normally at the beginning of
a feeding, but tire out by the
end of the feeding. Babies
with behavioral feeding resistance
(oral aversion) tend
to turn away from the bottle
before it even gets put in the
mouth.
Sometimes, I find a treatable
cause of malnutrition,
such as pneumonia, urinary
infection, gastroesophageal
reflux with esophagitis, food
skin infections around the Gtube
site. Because of these
risks, I tend to recommend
feeding tubes only to these
children who I feel will really
benefit, and who will need
supplemental feeding for a
long time. I also make sure
other ways of improving nutrition
(such as thickening
feedings or increasing calories)
have been tried.
After discussing all these elements
with parents, I find
most parents are prepared for
having a feeding tube placed,
assuming their child really
needs it. If parents are not
ready, I recommend further
discussion between them, and
ask for a return clinic visit so
that I can answer any questions.
Since a G-tube involves
a major family commitment, I
feel it is important that a family
believe it is in their child's
best interest before I recommend
the surgery. q
P a g e 3 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
the severity of a patient's lung
disease.
3. Does the child need the
tube for medications?
Certain children with intractable
epilepsy or other conditions
may require a large
number of medications. If a
child with epilepsy starts having
seizures, he/she may be
unable to take their medications
by mouth. Lack of medications
in turn leads to worse
seizures. In these situations, a
G-tube may provide a useful
"safety valve" by which special
needs children can receive
their medications under just
about any conditions.
4. Do the benefits of a tube
outweigh the risks?
In the year 2000, the surgical
risks of placing a feeding tube
are relatively low. At Children's
the tube is placed under
general anesthesia, with a gastroenterologist
and surgeon
performing the procedure. The
risk of a serious surgical complication
of G-tube placement
(bowel perforation, bleeding)
is less than 1:100, and the procedure
takes under an hour.
Nevertheless, there are some
children (between 10-20%)
who may have problems after
the tube is placed. These problems
include vomiting and
Since a G-tube involves a
major family commitment,
I feel it is important
that a family believe it is
in their child's best interest
before I recommend
the surgery.
A Gastroenterologist’s Perspective ...
The MIC-Key button. Taken from the
Patient Information Guide from Medical
Innovations Corporation.
Commonly Asked Questions Regarding Tube Placement
Heidi Quinn M.S., RD, Feeding Team Coordinator, Children’s Hospital, Boston, MA
development. Your child’s
speech, occupational, or physical
therapist can develop an appropriate
oral-motor program for
your child.
What do I feed my child
through the G-tube?
There are many types of formulas
that can be given to your
child through the G-tube to meet
your child’s nutritional needs.
Your child’s nutritionist will
help you plan an appropriate diet
to meet the individual nutrient
and fluid needs of your child.
Vitamin and mineral supplements
may also be incorporated
into your child’s diet intake.
Can I put food through the Gtube?
Blenderized foods are available
as commercially prepared formulas
or can be made at home from
baby foods, juices, milk, baby
cereal or pureed foods. However,
preparation of home
blended formulas require careful
sanitary measures with regard to
foods and equipment used for
preparation, and monitoring by a
nutritionist for adequacy of calorie
and nutrient intake. Your
child's nutritionist can help you
develop the best diet for your
child. q
Parents have so many questions
and concerns as they consider
G-tube placement for their child.
It is a difficult decision often
filled with much anxiety. First,
let’s discuss some of the benefits
of G-tube placement, and
then address some of the nutrition
and feeding questions that
we commonly hear from parents.
What are the benefits of having
a G-tube placed?
Supplemental feedings via a Gtube
provide:
· Appropriate nutrients for
good growth and good health to
help fight infections.
· Fluid to meet hydration requirements
and ease constipation
difficulties.
· A safe feeding alternative
for children who cannot safely
feed orally.
· Help in reducing stress and
anxiety, for both caregivers and
child, due to long feedings with
often limited volume of intake
which are not adequate for
growth and good health.
· Reducing the number of
hours spent feeding allows more
time to do other things with your
child which are enjoyable and
less stressful.
What about using an NG-tube
instead of a G-tube for supplemental
feedings?
In general, NG-tube feedings are
recommended only as a short
term (i.e., 6-8 weeks) supplemental
feeding method. Prolonged
NG-tube feedings have been
found to contribute significantly
to the development of oral aversion
which can be a barrier to the
progression of oral feeding later
on.
Can my child still eat by mouth
if he/she has a G-tube?
If your child does not have safety
issues related to oral intake (i.e.,
Is not at risk for getting food or
fluid into their lungs), he/she can
and should continue to eat by
mouth. It is generally recommended
that they continue to eat
by mouth to promote both oralmotor
and feeding skill development
as well as to experience the
pleasurable social aspect of sharing
mealtimes. For some children,
safety considerations need
to be addressed, generally by a
speech-language pathologist or
occupational therapist who specializes
in oral-motor feeding issues.
Some children may be safe
with certain textures of food or
fluid, or very small volumes of
specific foods or fluids.
What if my child is not allowed
to eat by mouth?
There are many pleasurable activities
that you can do with your
child to help promote oral motor
K i d s w i t h T u b e s N e w s P a g e 4
A Dietitian’s Perspective ...
Commonly Asked Questions Regarding Tube Placement
Arden Hill, M.S., CCC-SLP, Children’s Hospital, Boston, MA
for an extensive period of
time. A G-tube is typically the
"tube of choice" for a child
who can tolerate feedings into
the stomach and is considered
the preferred tube for a
"partnership" with oral feedings
when the child is safe
and comfortable eating something
by mouth. The J-tube is
often recommended for the
child who cannot tolerate
feedings into the stomach (i.e.
vomiting with feedings and
compromising their health or
growth as a result).
Will my child need the tube
forever?
Some children need supplemental
tube feedings for fairly
short periods of time (i.e. 6
months), while others may
need them considerably
longer. The determining factors
are again safety and ability
to meet nutrition and hydration
with oral feedings.
How long does it take to
wean my child off of tube
feedings?
The time period greatly varies
from one child to the next. In
addition to safety and nutrition
factors, a child's medical
status plays a huge role. Often
there are interfering factors
such as gastroesophageal reflux,
necessary medical inter-
Why would my child be considered
for tube feedings?
If your child cannot safely
orally feed because food or liquid
is going into the trachea
and down into the lungs and/or
your child cannot meet their
nutrition or hydration needs
with oral feeding alone, tube
feeding might be considered.
How do I know how much
food or liquid going into the
lungs is too much (referred to
as aspiration)?
The truth is, no one knows.
This can be a very frustrating
answer to parents as well as
therapists. What we do know is
that food and liquid does not
enter the lungs in a child with a
normal swallow and that there
are many children who have
recurrent difficulties (i.e. upper
respiratory infections, pneumonias,
fevers, asthma, allergies)
when aspiration occurs.
How do I know what tube is
best for my child?
The decision regarding what
type of tube is right for your
child is really determined by
your core medical team. Typically
an NG-tube is considered
a short-term supplementation
system. That can have a negative
impact on a child's comfort
with their mouth and with oral
feeding experiences if it is in
P a g e 5 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
vention (i.e. surgery), ability
to integrate sensory information,
and common childhood
illnesses that can interfere
in a child's comfort
with oral feedings. When
there are interfering factors,
the weaning process can often
last a long time, even
years. In many children, as
these interfering factors become
less pervasive, the
process moves ahead at
what often feels like slowbut-
steady progress. The
ultimate goal of a speech
language pathologist is to
have every child feed orally,
but not at the expense of
safe oral feedings and/or
adequate nutrition and hydration.
Our job is to educate
and advise, but not to
make ultimate decisions
about your child's care.
Only your family, with the
support of your core medical
team, can make management
decisions for your
child. q
A Speech and Language Pathologist’s Perspective ...
May’s Story
mum requirement increased.
We took the data from the
log and charted it to illustrate
to the doctor our concern
about how her vomiting was
increasing in frequency. The
doctor felt the NG-tube should
only be a temporary measure,
and he started getting us ready
for the G-tube decision. After
6 weeks of the NG-tube at
home, we could never catch
up to that minimum required
amount by mouth. It was
clear that it was time.
Then May pulled a fast one
on us. She yanked out her
NG-tube, a common occurrence,
two days before her
scheduled surgery. The next
day, instead of getting the visiting
nurse over to drop the
tube back in, we thought we’d
see how well she’d bottlefeed.
She only had one day
before her surgery, so we
thought it wouldn’t hurt to try
it. Of course, she bottle-fed
very well that day. We gave
her regular strength formula,
which at 20 calories per ounce
was nice and watery and
thirst-quenching. She drank
almost all of her volume requirement
for the day. We
were ecstatic. We agonized
all day about whether or not to
go ahead with the G-tube.
Was this a fluke performance
or could she bottle-feed and
gain weight on her own?
We decided to cancel or at
least postpone the surgery. It
was a Sunday night, the surgery
was scheduled for 7 a.m.
the next morning, and the only
doctor on call was someone
we didn’t know. Talking to
him on the phone, we somehow
tried to explain the day’s
experiment, and how it made
us want to change our minds
about the surgery. The G-tube
sounded so invasive and scary.
I guess in the end we felt embarrassed,
and decided we
were just suffering from cold
feet. He talked to us patiently,
and finally convinced us to go
We resisted the idea of placing a
G-tube in our daughter, May, for
as long as we could. Due to
pregnancy complications, May
was born prematurely and small
for gestational age at 29 weeks
gestation and only 1 lb 7 oz. She
had no congenital problems, but
she struggled to survive with
respiratory distress, among other
typical preemie medical problems
which led to chronic lung
disease and failure to thrive. As
parents, we struggled with many
decisions over her care, but the
hardest one was the G-tube. It
seemed so foreign, invasive and
permanent, we hoped against
hope that we could come up with
a simple solution for a very complicated
problem.
In the NICU, May's doctor
occasionally floated the idea of
placing a G-tube. The nurses
disagreed with the idea and assured
us that she would bottlefeed
and grow better at home.
She languished an extra month
in the NICU while we tried to
get her to take all of her minimum
bottle feeds, but she always
needed to be supplemented by
the NG-tube. Finally, at over 4
months of age she came home
without the NG-tube and we had
expectations that she would soon
improve her bottle feeding.
The first six weeks at home
were distressing and exhausting.
May showed no improvement in
her ability to feed, and had slow
growth despite the 32-calorie
"rocket fuel" formula of breast
milk mixed with formula, polycose
and oil. We essentially carried
on her NICU schedule at
home: every four hours around
the clock we fed her, gave her
meds, took her temperature and
recorded her input and output in
a log. She had weekly hospital
visits for weight checks and
blood draws to monitor her electrolytes.
At six months of age,
and after six weeks of very slow
growth, she weighed in at only
seven pounds. We talked more
about the G-tube decision, yet
our Early Intervention therapist
was negative about it, calling
the G-tube "no picnic". We
had no contact with anyone in
the outside world who had
ever heard of a G-tube other
than our therapist and
medical professionals. We
agreed to use the NG-tube
again as an interim measure
before we had to face the Gtube
decision.
May had a terrible aversion
to anything going in her
mouth. We believe it came
partly from her history of a
long intubation and use of the
NG-tube, partly from having
to take the extremely bitter
tasting KCl (potassium chloride)
supplement by mouth,
and partly the thick formula
she had to drink. She would
only suck consistently on the
bottle while she slept. Awake,
it was always a struggle. We
didn’t know it then, but it was
an oral aversion that would
last for several years.
We started her back on the
NG-tube at home and she began
to pile on the weight. We
put her meds through the tube
so she didn’t have to taste
them. At the same time, however,
she began to develop
severe gastroesophageal reflux.
The vomiting went on
day and night. We would estimate
the volume vomited and
then re-feed that amount with
fresh formula. We tried to
continue the bottle and soon
began trying the cup. She
seemed to hate the bottle and
preferred the cup. The Early
Intervention therapist brought
us Haberman nipples, which
take less effort to suck. I
bought so many different nipples
and even ordered a case
of the same brand of nipples
she used in the hospital, always
hoping for a simple solution.
But she would not take
enough volume by mouth.
She became more and more
dependent on the NG-tube as
her weight increased and her
corresponding caloric mini-
K i d s w i t h T u b e s N e w s P a g e 6
ahead with the surgery. May was 7
½ months old, and weighed just
under 9 pounds.
May gained weight extremely
fast with the G-tube. In the first
month, she gained 2 pounds. After
a few months, she hit the growth
chart for the first time. Now using
a pump at night, we all got a good
night’s sleep every night, except
when she awoke to spit up. We
didn’t have to wake up every four
hours to feed her. The down sides
were hard. Vomiting increased, she
required a grueling daytime feeding
schedule because she could only
tolerate small boluses, and her oral
intake decreased to nothing at all by
mouth. But the medical implications
of weight gain and full nutrition
were obvious as she started
along the long road to physical recovery
and the race to developmentally
catch up with her peers. q
I bought so many different
nipples and even ordered a
case of the same brand of
nipples she used in the
hospital, always hoping
for a simple solution

How to Know when it's time for a Feeding Tube

2005-12-29T20:26:00.000-08:00

Matthew JUMP Video (Merry Muscles Jumper)

2005-12-28T21:20:00.000-08:00

This was matthew first GREAT day after beating pneumonia again. He loves his Merry Muscle Jumper his Aunts bought him for christmas!
Remember to Stop Music from playing at the top of this page before you click to play a video!!!

How Much can a Heart take?

2005-12-28T20:24:00.000-08:00

My friend came by today from Alabama. She has a little girl (she has custody of) with Schitzencephaly. She really needs prayers. Her daughter is going through a really rough time. Seizures are taking over and have affected terribly. By saying that she constantly screaming and is getting very hard to handle. She is weighs more than her mom and is very strong. I want to help her so bad, but I have my hands full with Matthew. I know she must be in a lot of pain. It's hard when you do everything you can to help your handicapped child... But it's really hard when the child can't control her emotions, anger or actions. It's very hard on her. I know it's hard on me and Matthew is the sweetest baby in the world. I get my blessing from his smiles and hugs but I don't know what I'd do if he screamed all the time.. even during the night. I just pray that things get better for her... It takes a lot of faith to keep going and a lot of prayers. All I can do is tell her I'll pray for her but sometimes that's not enough. People that really can't help that want to , like me CANT help because of Matthew's illnesses. People that CAN help simply WONT help. All I can tell her is LET JESUS TAKE THE WHEEL FRIEND. When you hear the tantrums and the screaming, find you a closet or a corner somewhere and ask Jesus to take the wheel.. pray loud enough that HE can hear you and maybe your little one too. I did'nt want to mention your names but you know who you are. My heart hurts with you. I just wanted to cry today when we were in the truck today. I can't understand why God puts things like this on us and I question him but I know there's got to be a reason. If the reason is only to teach me compassion, love, patience and understanding, I guess that will be good enough for me. It just means God is getting you ready for Bigger and Better things. It's all going to be alright. So just hang in there. Always remember I'm here for you. I may not can do much but I can pray for you.
Love Charlotte and Matthew

I Got My Wish For Christmas!

2005-12-25T19:09:00.000-08:00

This is Josh, "Hamming" it up!
Merry Christmas! Here's Mary, Big Matt and Little Matt. Now you know who matt Looks like!!

My son, Josh the US Marine got a 10 day leave for Christmas. We got up early to open presents. Matthew wasn't in the mood to get up early. As you can tell by the pictures. We all kissed him awake. (Josh Left and Uncle Korey, Right Pic)

Funny how Matthew can make even a MARINE M E l t! I got my two top priority wish for Christmas. Another Christmas with Matthew and 10 days with my son before he goes to Fallushia.. Yes. I said Fallushia. I know very little about the war in Iraq but if you asked me where I would NOT want him to go it would be Fallushia! You don't have to know much about the war to know that that's the worst place he could be sent. I don't even want to get into it. I know he is being well trained. He's being trained to fight like a devil dog and I didn't understand it at first but I do now. I want him to be just as mean and as sly as the devil when he gets there. That's the only way He'll get to come back home. His specialty is Machine Gunner. He's a sharp shooter. They are learning house to house combat when he gets back... I did a little research and it all boils down to this. Statistically, Matthew has a better chance of living longer than Josh does when he goes to Fallushia and that's not good. Not good at all. Now I have two things to worry about. I do know that if anything happens to him that he will be doing what he's always wanted to do. (Crazy though he may be) I still support him and all the military in and around Iraq. All we can do is pray and pray. I'm going to be a total wreck when it's his time to go to Fallushia. I'm not getting any younger and not sure how much more stress my heart can take.

Matthew is lots better. He's still stuffy but no fever in two days. Seizures are still bad but not as bad.. He's not haveing them during the day, just at nap time and at bed time. I'm glad he's better. I'm still going to see about the feeding tube next week. Have not changed my mind.

Here are more pictures.. I must have been a good girl.. I got lots of stuff this year! Matthew got his merry muscles jumper and a treadmill to go with it. I'll have a video of him in the jumper to share with you all soon!

Charlotte

The Broken Wing (True Story)

2005-12-23T19:01:00.000-08:00

As I was cleaning yesterday, I accidentally kicked Matthews ceramic angel and the wing broke off. It stays by his baby bed. The wing shattered into a million pieces. I picked it up and put in the the garbage can and never gave it another thought.

Later whenever I was cleaning the kitchen, I dumped out some coffee grinds into the garbage can on top of the broken angel. Never gave it another thought.

That evening I was going to get the garbage ready to go out and when I looked into the can the Angel was looking right at me. Her face was covered with coffee grounds. That's when it hit me. I tearfully took her out of the garbage and rinsed off the grounds. I tried to glue back the pieces of the wings but it was just too many pieces. I took the broken angel and put her back in her place besides Matthew's baby bed. Back were she belongs. I couldn't believe that I was going to throw it away, just because the wing was broken. It is still beautiful and still just as good as it was before except that now it is a "special" angel. Just like my Matthew. She still had the same look on her face. She looks like she is watching something or possible, she' watching Matthew. Nothing else was wrong. Just a broken wing. I don't care what people may think when they see the broken angel. Some may wonder what happened to her. Why don't I just throw it away or put it away somewhere.. Some may wonder why I want to hang on to it or why don't I just go and replace it with one that's not broken. To me, this Angel is now priceless and I wouldn't trade it for anything. It may not be perfect in their eyes but it's more than perfect to me. I wish everyone could feel what I feel in my heart now when I look at it. If you never had an angel with a broken wing, then you could never know how precious they are.
Charlotte

Matthew's Living Will (Ganny's Version)

2005-12-22T19:51:00.000-08:00

Matthew A. Sanderson’s Living Will (Ganny Charlotte’s Version)

Warning, Death mentioned-A Lot. Might be more than you can handle But I want this said and I'm not changing my mind this time.
Incase something should happen to me. I want to MAKE SURE that Matthew is taken care of. Especially since he will be getting a feeding tube. So here it is. If this situation comes up and I'm deceased I hope that anyone reading this will fight for my baby's life and let them know about this will. If you didn't have anything to do with him while he was "not sick" then you shouldn't expect to have any say so in this matter. Sorry I have to be so harsh but I want what's best for Matthew. There is a signed copy of this will with in my home.
NOTE:
When I say "The Way he was before" that can only be determined by the persons mentioned at the bottom of this Will. These are the only people that know Matthew besides me and know all about him.. The doctors do not know how Matthew was before. You can look at my videos on this blog and see "the way he was before".

To Matthew A. Sanderson's family, doctors, hospitals, and all those concerned with his care: I Charlotte Kappler , Legal Guardian, being of sound mind willfully and voluntarily make this declaration to be followed if I become incompetent or If I die before my Grandson Matthew Sanderson.This declaration reflects my firm and settled commitment to refuse life-sustaining treatment under the circumstances indicated below. Notice I said UNDER THE CIRCUMSTANCES.Being legal gaurdian, grandmother, mother, nurse and caretaker I deserve my requests met to the fullest. I took care of him and devoted my full attention to him while I was on this earth. I expect my wishes to be met. No one other than I or the one's I have mentioned in the will shall have any say so in Matthew's care.FIRST, under NO conditions is ANYONE to remove his feeding tube unless you are just changing it out. I don't care if you know for a fact that he's brain dead, I do not want him starved to death and that's what you'll be doing so DON'T Do it..!!!! You can feed a person all you want, if they are going to die, they will die with the feeding tube. If you remove his tube and he is still alive you will be a murderer.I expect the above mentioned parties to regard themselves as legally and morally bound to act in accordance with my wishes, free, thereby, of any legal liability for having followed my directions.1. I direct Matthew's attending physician to withhold or withdraw life-sustaining treatment that serves only to prolong the process of his dying, if he should be in a incurable and have no chance of recovery. His mental and physical state should not be taken into consideration unless one or the other is causing the death. To make myself Clear on#1 I don't consider Matthew to be "dying" just because his brain is different. Just because he can’t walk, talk or crawl doesn’t mean he doesn’t get the same treatment as a "normal" child. If life sustaining treatment can get him back to the way his was before then I WANT life sustaining treatment. If he has a siezure and has cardiac arrest, I WANT him reseccitated. If he's dying and there is no hope of being like he was before, then you may withhold life sustaining treatment. (Don't touch the tube!) But if he has any chance of being like he was before I want everything done for him possibe. TREAT HIM AS IF HE WAS YOUR NORMAL CHILD, NOT AS A CHILD WITH MULTIPLE BRAIN MALFORMATIONS..2. I direct that treatment be limited to measures to keep him comfortable and to relieve pain, including any pain that might occur by withholding or withdrawing life- sustaining treatment. (not his tube!) That’s if he has no chance of surviving and being like he was before.
If he has pneumonia or cardiac arrest and requires a heart lung machine, then YES I want him to have it for at least 3 days. After three days we should know if it's time to let him go or not. That decision will be made by only the ones listed below.
If Matthew passes and I have passed before him, you should find great comfort in knowing that once again, he is being well taken care of by me in Heaven.

No Chaos at his funeral. Here's what I want.
No flowers at his funeral. I want all balloons of many colors released at the gravesite. Any donations can go directly to the funeral home to pay for the funeral, the rest will be given to
The Songs of Love Organization. No singers at funeral, just tapes or Cd's with original singers. Songs for Funeral, Angels Among Us, (Alabama)Angels in Waiting (Martina McBride) Because You Loved Me (Celine Dionne) I want my poems "Angel Wings" Read and the one called Jesus, Matthew and Me". They are all on my blog somewhere. At the gravesite I want someone to sing "Go Rest High on That Mountain" (Vince Gill)
My final and most important wish that I have is that he be buried right next to me. If it's possible, I would like him buried WITH me. Our fleshly bodies belong together in the grave as they did on earth even though our souls will be together in heaven. It would make a lot of people feel better knowing that we were together again.

Other Instruction:4. I designate, John Kappler, My Husband ,Legal Guardian as his surrogate to make medical treatment decisions for him in a manner consistent with this declaration, if I should be incompetent or be deceased and Matthew is in terminal condition or in a state of permanent unconsciousness.
If the person I have named above is unable to act on my behalf, I authorize the following person to do so: Mary T. Sanderson, His mother, and Mary R. Pugh, his Great Grandmother, Melinda Patton, Grace Shonts. This Living Will Declaration expresses my wishes, and the fact that I may have executed a form specified by state law shall not be construed as limiting or contradicting this Declaration, which is an expression of my constitutional rights.I make this declaration on this the 21st day of December,2006
Charlotte A.Kappler, Legal Guarding and Grandmother of Matthew A. Sanderson______________________________ _____________________________ Declarant Address______________________________ _____________________________ Witness Address_____________________________ ______________________________ Witness Address

Matthew's a LOT better today!

2005-12-22T19:27:00.000-08:00

Matthew started getting more "chipper" yesterday. Today he was cutting up in his walker and dancing. He was jumping and knocking all that gunk loose in his lungs and was coughing. It was very good for him. I didn't have much trouble getting him to eat or drink. No fever today either!
He is such a little soldier! He looked so pitiful the last few days. He didn't want to do anything. It's scary seeing him like that. I know my mom can't stand to see him just laying around because she knows I keep him busy most of the time.
I got a lot of email regarding the feeding tube. I have decided to go with it. I don't want to be the cause of him getting another aspiration pneumonia. I have heard a LOT of good things about it. I have not heard any "bad" things. It all sums up to one thing. The feeding tube saves little lives everyday. It doesn't have to be permanent. Just to use on his "bad" days. I can handle that. I have set up an appointment for next year to see a lung doctor and then we go from there.

I feel really dumb right now. I alway check on Matthew every hour or even sooner if he's asleep and I'm on the computer and can't see him. I just bought a lot of double a batteries and cleaned up all his toys and they are like brand new again. I couldn't see buying more toys when he doesn't even play with half the ones he has. I also put batteries in a crystal that an internet friend sent him. You set the crystal on a stand and it light up in the color BLUE. It's right above his head and the blue is reflecting on him. I got up after I typed the first paragraph of this post to check on him an my heart jumped out of my chest! He was BLUE! I jerked him up and guess what? He was fine. It was the blue from the crystal. lol It wasn't funny at the time but it is now.
It's not totally dark in the room. I probably would have caught it if was totally dark and the crystal was the only thing that was on but I didn't . lol...

Now the "not so funny part" is that when I check on him I stand there and wait for his chest to rise and fall... not once but twice. It's a habit. I even do it during the night. If I oversleep, It's really scary. I am a member of lots of yahoo groups that have kids with the same stuff matthew has. Most of the kids pass when they are in the hospital but some just pass during the night for no reason other than their brain malformation. Yesterday, I am taught another word that I care not to but I had to. I had to google it.
The word is OPISTHOTONOS

I did a little research on Opisthotonos because I was wondering what causes it. It says it is a sign of irritation of the membranes surrounding the brain and spinal cord (meninges). It may also occur as a sign of depressed brain function or injury to the nervous system. It also comes with some very rigid seizures (arching backwards). What I was wondering was if a sickness can cause this or a brain malformation? Matthew has so many brain malformations and so many seizures I was just concerned that he could get it. He certainly does have areas of his brain that are depressed meaning they dont work... I didn't know that a brain that has depressed function could get worse? Matthew's diagnosis is static encephalopathy meaning it stays the same, doesn't get worse but this is different. Anyway, I have enough to worry about but I thought I should at least check it out.

I know that He's in God's hands but I also know that he's not going to live very long with all the odds against him. If he did live until he was 40 or 50, what kind of life would that be? If you are a christian like me and believe in eternal life in Heaven, then you would know that a long life is not the answer for him. A Miracle would be nice though.
Charlotte

Uncontrolled seizures =Aspiration Pneumonia=1Feeding Tube for Matthew

2005-12-20T21:27:00.000-08:00

Matthew was diagnosed with the croup last friday, today after an xray they said its pneumonia. What's strange is that is in the same spot on his right lung as last time.
Matthew still sucks a bottle and eats a little with the spoon but with these seizures lately it's gotten harder to get the food down him without him choking. When he's not having seizures he can eat and drink great. I asked the doctor since the pneumonia was in the same place on the same side, could that be from choking on his bottle or food and she said most definately. Now when I try to give him his meds, it's an all day chore sometimes and most of the time, especially when he had the croup, he is choking on the robitussen, benydryl and motrin that I have to give him with a dropper.
He's not underweight and I guess a tube could be a good thing but I just HATE to have to give in the what we were told he would need right after he was born. .. a feeding tube. I fought the battle for close to four years to keep him off of the tube but I don't want to kill him everytime I give him something to eat.... He's only had pneumonia twice. He had a swallow study done a few years ago and he could probably pass another one but it would depend on how many seizures he's had that day.. they affect his swallowing.. I've heard some good things about tubes and bad things. I want to still be able to put him in the whirlpool EVERY single morning and take him swimming .. is that possible?? I just hate the thought of an opening on his little body.
I guess some of you know what I mean. Anyway I am going to make an appt. for next year to get the ball rolling.... I just hate to say I lost this battle and the doctors were not right ... but I guess I will have too...
Charlotte and Matthew
PS.
He's at home with me and doing fine. He is getting better slowly.

Here's a few things I found about Aspiration Pneumonia. Now what is the BEST FEEDING TUBE ?? I gotta lot of googling to do.

ASPIRATION PNEUMONIA

GENERAL INFORMATION:

What is aspiration pneumonia? Aspiration (as-pi-RAY-shun) pneumonia (noo-MOH-nyah) happens when a liquid or an object is inhaled into the lungs. A common cause of aspiration pneumonia is inhaling (aspirating) acid or vomit from the stomach. Having food, drink, or saliva (spit) from your mouth go into your lungs can also cause aspiration pneumonia. When these things go into the lungs, it can damage (hurt) the lungs, or cause a blockage. This damage or blockage may cause swelling and fluid in the lungs. It can also cause an infection (in-FECK-shun) in the lungs, such as bacterial (bak-TEE-ree-al) pneumonia.

Who is most at risk for getting aspiration pneumonia?

Having trouble swallowing or coughing increases your risk of getting aspiration pneumonia. Your risk of getting pneumonia and having swallowing problems increases as you age. Many health problems that affect muscles or nerves can increase the risk of aspiration pneumonia. Examples include a stroke, a head injury, seizures, multiple sclerosis, or Parkinson disease. Problems with your esophagus (ee-SOF-ah-gus) can also increase your risk of aspiration pneumonia. Your esophagus, or "food pipe," carries food from your mouth to your stomach. People who are unconscious because of anesthesia (an-es-THEE-zah) or a medical problem may choke or aspirate. Becoming less alert due to certain drugs or alcohol, or overdosing on drugs increases your chance of having aspiration pneumonia.

You may be more likely to get pneumonia if you have a lung disease such as asthma or emphysema (em-fi-SEE-mah). You are more likely to get pneumonia and other lung infections if you smoke. Having a long-term medical condition (such as heart failure) may also increase your risk of getting pneumonia. If you have to stay in bed for a long time, such as after an injury or surgery, you have a greater chance of getting pneumonia. You may be more likely to get pneumonia if you have a long-term drinking problem (alcoholism), or if you have a poor diet.

What are the signs and symptoms of swallowing problems? It may be hard to tell if you or someone you care for has a problem with swallowing. Tell a caregiver if you notice the following signs of a swallowing problem.

Drooling, or having food or fluid leak out of the nose.

Having food left over in the mouth after swallowing.

Feeling pain when swallowing, or feeling like something is stuck in the throat.

Having to make unusual movements of the head or neck when swallowing.

Coughing or choking a lot when eating or drinking.

A wet or gurgle-like voice after swallowing.

What are the signs and symptoms of aspiration pneumonia? Sometimes it may take a few days for symptoms of aspiration pneumonia to begin. The signs and symptoms of aspiration pneumonia can get worse very quickly. The signs and symptoms that you have may depend on what you inhaled into your lungs, and how much was inhaled. Common signs and symptoms may include one or more of the following:

Frequent coughing. Your cough may may bring up bad-smelling mucus from your lungs. This phlegm (flem) may have pus or streaks of blood in it. You may also cough up frothy (bubbly) fluid from your lungs.

Shortness of breath or noisy breathing. Your heartbeat or breathing (while resting) may seem much faster than normal.

Fever or chills. You may sweat a lot.

Chest pain when you cough or take a deep breath.

Trouble swallowing, or you feel like something is stuck in your throat.

Feeling dizzy, faint, or having new trouble thinking (confusion). You may feel upset or anxious.

Feeling like you cannot get enough air. Your skin, lips, or fingernails may turn dusky or blue.

How is aspiration pneumonia diagnosed? Your caregiver will examine you and listen to your heart and lungs through a stethoscope (STETH-oh-skohp). You may need tests such as blood tests or a chest x-ray. You may need different tests to find out more about how well you swallow. These tests may include swallowing studies, or special tests of your throat or esophagus. Special x-ray pictures, such as a barium swallow, may be needed to see what happens when you swallow. You may need an endoscopy (en-DOS-koh-pee) to find or treat a swallowing problem. During an endoscopy, your caregiver uses a small tube with a light on the end (called a scope). The scope lets your caregiver see your throat, esophagus, and stomach.

How is aspiration pneumonia treated? You may need to stay in the hospital to get better from aspiration pneumonia. You may need oxygen and special medicines to help your lungs. You may need medicine to help reduce the acid in your stomach or to help food move through your stomach faster. You may need antibiotics (an-ti-bi-AH-tiks) to prevent or treat an infection caused by bacteria (bak-TEE-ree-ah). You may need a machine to help you breathe. If you inhaled something solid, you may need a bronchoscopy (brong-KOS-ke-pee) to remove it. This procedure uses a small, flexible scope that is passed through your mouth and into your lungs. You may need special caregivers to help decrease your chance of inhaling something into your lungs again. A speech and language pathologist (pah-THOL-oh-jist) or an occupational (ok-u-PAY-shun-al) therapist may help find and treat swallowing problems. A dietitian (deye-e-TISH-an) can help you plan easy-to-swallow meals to decrease your risk of choking.

Risks: Aspiration pneumonia can be serious, even life threatening. You may get a lung infection that may spread to the bloodstream or other areas of your body. You may get other life threatening problems such as respiratory failure (when you cannot breathe without the help of a machine). Pneumonia is even more dangerous for people over the age of 50, and people with immune system or other health problems. It may take a long time to get better after having aspiration pneumonia. The sooner your pneumonia is treated, the less chance you have of problems.

Holding You Video

2005-12-18T10:01:00.000-08:00

I had someone say they couldn't find the Holding YOU video so I moved it up here. So here it is.
Charlotte

Vote on Matthew's Pic so we can win a Camera

2005-12-15T13:30:00.000-08:00

Please click on the link above and vote on Matthews Christmas pic I submitted to a local television station. I sure could use a new camera.... It's the cutest pic on there anyway!
Charlotte
http://www.wlbt.com/Global/link.asp?L=159468&nav=1L7tbw0h

Wahabi Shriners Christmas Party Pics

2005-12-10T21:18:00.000-08:00

Wahabi Shriners' Christmas Party 12-10-05

The great people at Wahabi Shriners Temple in Jackson, invited us to their annual christmas party. The do lots for the kids that go to Shriner's Hospital. They pay for gas and a room every single time we have a doctors appointment in Shreveport. I don't know how we would have made each and every appointment without them! Shriners Hospital in Shreveport is a great hospital. Anyway here are some pics!

A Christmas Video For Our Friends

2005-12-06T11:57:00.000-08:00

I made up this Christmas Video of pictures of all of our friends we've met since Matthew was born. Most are from the many support groups that I belong too. Some are from right here in Vicksburg. This is all we want for Christmas. Parents of Special Needs Childrens always want just one thing for Christmas. For me it's a day without seizures. I snuck a picture of my USMC Son who BETTER come home for Christmas since he couldn't make it Thanksgiving.
Charlotte

Smokey Mountain Memories

2005-11-28T19:55:00.000-08:00

We're took a two week vacation to my sisters house in Mr. Carmel TN. We took Matthew to the Smokey Mountains this time. If you watch the video, you'll see why they call them "Smokey".
We had a great time. We even got a tiny bit of snow while we were there. Only bad news is that Matthew's seizures changed again. He's having tonic clusters when he is going to sleep instead of when he is waking up. His seizures are always changing. I think he's having more this week because of ear infections. He went to the doctor today. He's on drops and antibiotics. Normally his seizures increase or change whenever his is sick. It's hard to tell when he's sick because he's always so sweet and angelic. The only way I know that he's got an ear infection is he'll not want to suck his bottle. I guess it hurts his ears to suck and swallow. That makes it very hard to get food and water down him! He's doing a lot better already.
Hope you enjoy the video! Matthew saw the Christmas Lights in Gatlinburg when we were coming back from the Mountains. Gatlinburg is one big light show even a month before Christmas. It's beautiful there! We saw lots of deer and visited some very old homes and mills. After that, we bought our jar of blackberry jelly and went back to my sisters house. Unforturnately we didn't see any bears! We were looking though.
Charlotte

A Time Capsule. Get an Email in Twenty Years!

2005-11-13T20:25:00.000-08:00

I came across this address today. You can go to the websites (Forbes) and Write yourself an email. Then you can pick if you want it to be emailed to you in 1-20 years. I picked 20 years.
It's hard to think that far ahead. My angel probably won't be here in 20 years and most likely, I won't either!. .. I wrote a lot of things that learned in life. Of course you can guess it was mostly about matthew.. I also wrote it to "whomever" gets the email If I have kicked the bucket by then or if Jesus comes back first. I kind of hope Jesus comes back first to get us because this world is going to be a bad, bad place to live in, in twenty more years. Some people don't like to look back on their past but I would rather look back on my past than look into our future because my past doesn't seem so bad when compared to how things are going to be twenty years from now.. sounds crazy but I have my reasons.

Anyway, I need to get in bed if I am going to get up at three AM. We are going to Tn for almost two weeks,,,, (Thanksgiving). SO KEEP US in your prayers while we are traveling. If feels great to be able to take matthew places without is being such a hassle. He is a great car rider and we have fun singing and dancing while we are driving. (yes it can be done. lol)
Anyway
Good Night and don't forget to check out that time capsule thingy.. it's great.
Charlotte

Siezure Video Link (Myoclonic Jerks)

2005-11-12T19:26:00.000-08:00

I know when we first started our Odyssey with Matthew, we had a lot of questions. Especially when it came to seizures.. There are so many different types of seizures it is unreal! Who would have thought that Matthew would have a "laughing" siezure or who knew it was a seizure whenever he was moving his legs constantly like he was riding a bike? Yes, that's controversial but I know for a fact that they were seizures because as soon as He was put on medication for seizures the cycling stopped.

Anyway. I added a link to the right side of this page entitled "Myoclonic Jerk Video". Or you can click of the title of this post to get to it.
I know I searched everywhere all over the net and couldn't find a video of a myoclonic jerk so I could see if that was what Matthew was having. So i hope this video helps you if you've found this site searching for Myoclonic Videos.
I forgot to mention that lipsmacking. He did that right after the myoclonics and would have a "chill" run all over his body and would have the "shivers".

Matthew was younger when he had these. He outgrew them and now he has one or two tonic seizures a day. I don't have those on video yet. What are tonic? Well just imagine the myoclonics ten times worse as what you see in his video. Instead of one right after the other, he has one and holds it. His face gets white as a sheet. His lips have not turned blue.. yet but he holds it for about 10 seconds and his arms and legs are stiff. He always has his towards the right. It is followed by some quick body jolts but only about 2 or 3 jerks... We heard that if you multiply the siezure he's having now times 5, it will probably take the form of a grand mal siezure which is also a form of tonic siezures.

The best way to explain the seizures to your doctor is NOT to "explain them" but get it all on Video.

Matthew is sound asleep. We are leaving Monday for TN. Yep, Back to the Mountains! I love it. I feel like a bird out of prison when we visit the mountains. It's not been very long that we have been able just to pack up and go whenever we wanted. One reason, the main reason is because matthew was a "cry baby".. He would fuss and whine everywhere we went, non stop and nothing could stop him unless we got him out of his wheelchair and held him. I have a totally different little boy now. He will sit for hours or lay for hours if I let him. He smiles when he gets up and smiles when he's going to sleep. He NEVER cries or fusses.. only when he's hungry.! Praise God for that and I don't want to ever forget how much he has changed. An answered prayer again. He is really living up to his screen name "angelbaby" now.
Charlotte

Here is some information on the types of seizures.. this is not all of them but the most common type of seizures.

Seizures are generally divided into 2 main types:

Focal: involving a limited brain region
Generalized: involving the entire brain. Therefore always associated with loss of consciousness.
Focal seizures may spread to the rest of the brain, therefore becoming focal seizures with secondary generalization.

Partial (focal) seizures
Simple partial seizures (without loss of consciousness)
With motor signs (uncontrolled muscle movements)
With somosensory or special sensory symptoms (smell, vision,...)
With autonomic symptoms (nausea, blood pressure changes,...)
With psychic symptoms
Complex partial seizures (with loss of consciousness)
Simple partial followed by a loss of consciousness
Impaired consciousness from the onset
Partial seizures evolving to generalized seizures
Simple partial with secondary generalization
Complex partial with secondary generalization
Simple to complex to generalized
Generalized seizures
Typical absence seizures (petit mal): consists of staring for a few seconds then returning to full function, where activity was left at the onset of the seizure, as if nothing occurred. The patient has no recollection of the event. This is unlike most other seizures that will be followed by as after seizure (or postidital) drowsiness and confusion that may be prolonged at times.
Myoclonic seizures: Usually presents with rapid muscle jerks. These may be caused by:
Benign (non-epileptic myoclonus): similar to the jerks one has when falling asleep.
Benign myoclonic epilepsy: A rare disorder that starts between 4 months and 2 years
Severe myoclonic epilepsy: A disorder that results in chronic progressive brain damage
Lenox-Glastaut syndrome: A severe epileptic disorder, associated with atypical absence (atonic and myoclonic), slow spike–wave complexes on EEG, and mental retardation.
Clonic seizures:
Tonic seizures
Clonic tonic seizures (grand mal)
Atomic seizures: Loss of muscle tone (drop effects)
Unclassified epileptic seizures: seizures that do not fit in the above classification, such as neonatal seizures and febrile seizures.

Matthew's First Rap Video! WIPEOUT!

2005-11-08T20:37:00.000-08:00

I'm just wondering how much space e blogger is giving me? I'm wondering if all these videos will crash their system or better yet,, mine? ha.ha. I might let this be my last video. At lease until the calous on my right wrist goes away. I need a softer mouse pad I guess. Ha.
We had fun today making this video. Matthew was really getting into the Music Video thing. He put his heart and soul in it. He danced everytime I said to dance and then some. It was a fun day.
Charlotte

Matthew was TWO in this Video!

2005-11-07T22:33:00.000-08:00

OK,
I finally taught myself how to upload videos from my mom camera. Now I've got hours and hours of video of matthew I want to get on CD. This is the first one. I found some really cute ones. This one is uploaded on Sharkle.com and youtube.com. It has really helped sharing my videos there to direct traffic to matthew's website. This one will especially because it's like an advertisment for his website.
Hope you enjoy it. Matthew had a rough night last night. He woke up laughing. I don't know if it's those gelastic seizures again or maybe he his guardian angel Brandon was tickling him??... It was more of a cute laugh and not like the laughing seiuzure but with kids like him, you just never know. Anyway, he decided he would stay up from two am to five am! I guess I better go to sleep too before he decides t wake up.. one more thing.

Seeing the old videos made me realize how thankful I am that he has adjusted to his world. I had almost forgotten that the first two years of his life was a mess. He didn't even sleep all night until he was two and a half years old. I can remember driving around at three am trying to get him to sleep. His mind just didn't know when to go to sleep but his body was tired. The Neuro said he would probably always be like that but guess what? Wrong... He sleeps all night and sometimes 10 hours if I let him. He sleeps like a normal kid his age. He has an enlarged hypothalamus and that's why the neuro said that. Plus he is on a very strick schedule. I wish I was. I better go to bed!
Good Night
Charlotte

Holdin YOU, Video That I made Today.

2005-11-06T17:13:00.000-08:00

In almost every picture we have, me or someone is always holding Little Matthew. So I decided to made a little video with one of our favorite songs. If it doesn't load fast enough here on the web page ,you can go to http://www.youtube.com/?v=TkJrNd19iVs to view it.
Ganny Charlotte

My Rewards.. Easy to get them.

2005-11-04T20:11:00.000-08:00

My Reward is Just a Sweet Little Kiss.

Matthew's doing pretty good. He had his flu shot a few weeks ago. I think I should have gotten one too. I am coughing and my throat hurts. Probably sinuses. I am eating antibiotics and coughdrops with vitamin c. Hopefull it's just a sinus infection.

Yesterday I took Matthew outside. It was a beautiful day. The weather has been perfect for him. As soon as I walked outside he started squealing. It's hard to describe it. It's a very High pitch,, long... Squeal. He kicks and giggles too. I should have him in his wheelchair but I decided to carry him. (Old habits are hard to break)

We walked out onto the porch and I let him "walk" while I held him up. He didn't want to walk, he wanted to run! So I let him run with me holding him under his arms as long as I could.... He was squealing all the way. He loves the sun on his face and it just drives him crazy whenever the sun flashes through the trees. I think that's the angels way of playing peekaboo with him. He just loves it and you can tell because he squeals and giggles even more.

I pick him up and he turns his head back and looks right at me, or I should say through me and opens his mouth so I can kiss him. He leans his head as far back as he can and that means I can have more kisses if I want it.

Next I ask him if he want to "swing swing". He nods his head with and unmistakable YES!!! Yes!!!.. As we swing he leans back and forth trying to get his old grandma to go higher and faster! He's just like his daddy.. He likes going fast!

I turned him upside down on my lap and let his head hand down and he thinks that's just the best thing in the world. It's like being in disney land or something. Ha.ha.

Finally we get bored, I mean I get bored and try to think of something else he can do outside. That's when we head to Pappas shop and get his keys to the lawnmower.

Finally after convincing papa to let us use his brand new lawnmower, we're off.

You should have heard the sounds he was making. We stayed in second gear going really slow. The whole time he is squeeling and leaning back and forth which of course means GO FASTER OLD GRANDMA! So I put it in fourth and man we are flying all over the place.. He will laugh uncontrollably and then lean way back and give me sugar and more sugar. When we hit a bump he even thinks that just great.

Finally we get finished and walk back towards the house. He's tired and has his head lying on my shoulder. That's his way of saying Thank You. You can just feel the love oozing all over me. lol

He keptd a smile on my face all day. We played most of the day. Didn't do ANY housework. It was still there when I got up this morning and guess what? I didn't do ANY housework today either and it's stil there. (Just twice as bad!)

It takes a lot out of me to try to keep him active but as you can see it's worth it.
I wonder how many people that have normal kids take the time no matter how tired they are to go outside with their kids and play with them. I know that I didn't spend nearly enough time with my kids doing things like that but I can't change the past and they turned out pretty good but I still have regrets because one is grown and married, one is now a Marine and could possible be going to Iraq and the other is well on his way to being on his own.

I guess when you have a special child like Matthew you have to learn to slow down and enjoy life. You try desperately to "slow down" time instead of rushing through life. Some people don't even realize they are doing that until they wake up one day and their kids are grown and leaving home.

I have learned patience, committment,responsibility,understaning,all from one little boy that has never spoken a word to me. I have learned it just from looking into eyes that cannot see and my rewards are angelic smiles and kisses.

Good Night!
Charlotte

Matthew's Halloween Video

2005-10-26T21:42:00.000-07:00

I had fun making it. I am hooked on windows movie maker! I gotta go to bed! I'm still waiting for the video to load so I can put it on here!!!!! I'll also put a link to it in the links section.
Good Night!
Charlotte

Yes, I am doing what I was put here for and enjoying it!

2005-10-26T09:06:00.000-07:00

I finally got a new computer and am able to work and update matthew's website. We had a great time in South Carolina and in Tennessee. Josh's platton made Honor platoon. Right now he is in School of Infantry in North Carolina at Camp Geiger. He gets to come home for 6 day during Christmas but not sure about Thanksgiving considering he actually just got picked up to start SOI school today. He was there almost two weeks waiting to get in. I guess everybody wants to be a Jar Head and now that we have our own Jar Head, I know why. It's not easy and it takes Honor, Courage and Commitment and he has all of it.

Matthew is doing great. Only has seizure whenever he falls asleep. Maybe two a day . He gaining weight again. That vacation was a much needed one. We have not been ANYWHERE in three years, except for maybe a weekend getaway. I realized when I was watching the videos that we sure had a lot more fun that what I thought I did. I also realized that you couldn't pay me a million dollars to be doing anything else at this time in our lives. It's rough sometimes and we just barely get by but God always makes a way for us, like he did when we went on our vacation.

Yes, I am doing what I was put here for.. Are you?

Charlotte

We're Back,Josh is home,and videos!

2005-10-16T17:37:00.000-07:00

Josh Graduated USMC Oct. 7, 2005! It was an experience We'll never forget. I have videos of the graduation. We decided to make a vacation out of the trip to South Carolina. Matthew got to dip his toes on the beach of the atlantic Ocean. He had a wonderful time! Those memories we had there are PRICELESS as you will see by the video! I also have other videos there. We went to the tip top of a Mountain in TN called "Almost Heaven". And we took him to The Aquarium in Gatlinburg. He had a great time. You can find that videos here:
Click on the Title above to get to the video of Matthew in the Atlantic. Then you'll see the other videos I have made on the same site.

It was the best vacation we had ever taken. WE all split the price of a vacation house on Hilton HEad Island and got lucky. When we got there the house we rented was under construction. They gave us a beautiful home (750,000 two story condo) to stay in. I didn't want to leave!!!

Matthew siezure are tolerable now. Only one or two a day and only when he starts to fall asleep. We decided not to up the meds because they would only knock him out and he is very alert and happy and we like him that way. He got a clean bill of health from the neurologist.

Well please make sure you comment on my videos when you get too them so I'll know you visited them. I got my first check from Google!! Only took 8 months! It came in the mail the day before we were to leave for South Carolina, just in time!!!
Love Charlotte and Matthew

A video I made for Hurricane Katrina Victims

2005-09-19T19:08:00.000-07:00

I stayed up making a video , my first. It's more of a slide show of videos and pictures.

Matthew is doing great. Still only a few seizures, one or two a day. Usually when napping or in the morning when he's waking up. The neuro said I could increase the depakote and give him one in the middle of the day. I decided not too because it makes him limp and lathargic. I don't like to see him like that. Quality of life is what I look for. The seizures are not BAD siezures, only lasts 5 seconds or less. I like him when he is active and playing, not sleeping. Sleeping all the time can only lead to pneumonia and more weakness and sickness. So we decided we can live with two seizures a day.. I asked matthew if that was okay with him and he shook his head "YES".. not kidding.

If you click on the title above, you should be able to view the video I made. Please leave comment on the Sharkle site and RATE me!!!
Good Night
Charlotte

Video of Matthew here

2005-09-12T21:45:00.000-07:00

CLick on the link above or click here http://www.sharkle.com/?a=video&id=2102
to see a video of Matthew walking in his walker. He also notices that Oscar walks by him. What great ears he has! What a little miracle.
Only Three SEizures ALL DAY! He had a little trouble eating today. The seizures he does have affects his swallowing. Maybe tomorrow will be a better day!
Charlotte

Skin, Rascal Flats

2005-09-09T20:26:00.001-07:00

If I uploaded it right, that's what you should be able to hear. It's a beautiful song. I just love it.
Let me know if you can't hear it.
Charlotte

Our Little Odyssey

Perfect Christmas gifts for Childrens with special needs..

Chronic Kids, Constant Hope, You gotta read this book!

New friends, new places to go, our new life!

Part II You'll never Believe Where we are on our Journey.

You'll never believe where we are in our journey!

Quick note...

Got Official Word that Matthew can get help! Just gotta get there!

A Poem and finally, it's probably going to happen.

Happy Mother's Day/ A poem to remind you that your mother won't be around forever.

This Grandma's spirit will never be broken.

Thank God for my friends, even If I've never met some of them.

25 Days after surgery update.. (GREAT!)

surgery update

Going home tomorrow and "One Believer"

Update, we're in the hospital..again. counting to ten

Update on Matthew and Thank You to his PenPals from Windermere 4th Graders!

We're Home!

Ok, there should not be a bruise there!

Can't go home until Saturday.. Picture of Matthew bruised back

After surgery video of incision and Matthew laughing!

After pictures and Messages from Matthew

Matthew now has a Baclofen Pump

Remember Leah

Having some fun with my Grandbabies pictures tonight.

The Perfect Little Sneeze!

Postponing surgery. He had 2 more seizures this morning.

Surgery may have to be postponed.

Here we go again in 2010

Stop and Smell the What???

A typical morning at my house.

Random Pictures to help get this updated

Found this is our archives! Birthday Poem I wrote

Seizure free today, compared to other posts

Graduation Inspiration

Poem/song I wrote 2005

We're Back!

A Video and Can a child be born a Marine?

Easter 2006

Another Angel Gets Her Wings

Penny Riding Shadow..

Meet Penny, Matthew's Minature Horse

Are You Searching?

Now He has Pneumonia! Poor Baby!

Here it is. I'm just glad it's OUT!

Matthews Xray and Ganny's Observations.

Still Waiting

Don't Matter What You Never Do , By Ganny Charlotte

MS Medcaid Say No more Therapy for Matthew, Well we'll just see about that!

Birthday Pictures

Guess Who's Turning FOUR? NEW PICS!

Puppies for Sale and Remembering My "Strays" and New Pictures!

Matthew's Feeding Tube Surgery (A Success)

Sanctity of Life Week

Stephen's Homecoming Video

Can't Afford a Gait Trainer? Here's an Idea

You got Something to SAY? Say it on a TSHIRT!

Another Angel Flying Too Close to the Ground Needs Prayers.

G Tube Surgery Journal

Doctor's Appt. Is tomorrow!

Songs of Love

Happy New YEAR

New Guest Book

You got a Question or Comment? I'll be glad to help you....

Make any comments or questions below:

How to Know when it's time for a Feeding Tube

How to Know when it's time for a Feeding Tube

Matthew JUMP Video (Merry Muscles Jumper)

How Much can a Heart take?

I Got My Wish For Christmas!

The Broken Wing (True Story)

Matthew's Living Will (Ganny's Version)

Matthew's a LOT better today!

Uncontrolled seizures =Aspiration Pneumonia=1Feeding Tube for Matthew

Holding You Video

Vote on Matthew's Pic so we can win a Camera

Wahabi Shriners Christmas Party Pics

A Christmas Video For Our Friends

Smokey Mountain Memories

A Time Capsule. Get an Email in Twenty Years!