Perfect Christmas gifts for Childrens with special needs..

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!

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!

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.

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!

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...

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!

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.

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.

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.

If nothing is going well, call your grandmother. ~Italian Proverb
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Grandchildren are a grandparent's link to the future, and grandparents are the child's link to the past.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I may not be rich, but I do have priceless grandchildren.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Life is easier if you hear the steps of grandchildren walking beside you!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
That when your newly born grandchild holds your little finger in his/her little fist, you're hooked for life.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.

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!)

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

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"

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

(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.