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