A typical morning at my house.

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

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

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

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

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

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!

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?

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

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

Another Angel Gets Her Wings

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..

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

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?

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!

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!

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.

#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

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

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!

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

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!