Hello,
Just thought I would let you know about Matthew's seizures. We decreased his lamictal after it was increased a few weeks ago and made things worse. I can see a big difference. I am also getting up before he does to give him his medicine early. Sometimes as early as 4:00 AM. Two days in a row he had no myoclonic clusters when he woke up. I gave him pediasure before bedtime and he had the jerks again. I am convinced that the sugar in the pediasure makes them worse and then getting his medicine a little earlier makes them better. I have to find "something" he can drink as a suppliment with vitamins that's not loaded with sugar. He eats good most of the time but not always. He's having anywhere from 1 to 5 bad tonic seizures a day. Those have decreased also. He gets 1/2 Klonopin in the am. If he wakes up at 2am or before 6 am I give it to him. It seems to ward off the jerks when he wakes up. I am putting this hear for my notes but also for anyone else that may be having the same problems.
CHarlotte
It's about time! I have been looking and looking for new and updated therapies to use on Matthew. So far the Physical therapy he gets is just keeping him loose. It's not helping him to walk, crawl or even roll over. I always said I wanted to make sure Matthew got the latest treatments and I'll do whatever I have to do to pay for it. I am expecting a video tape any day now that will explain more about ABR therapy. I have emails from many parents who have their children in an ABR program and they are astounded by the results. I'm not sure what all is envolved but I will know soon. They way I understand it is the "inner" muscles have to be "pumped" up and working before the outer muscles will work which makes sense to me. The diaphram is envolved and so are the inner organs. All those have to be functioning properly for the outer muscles to work. The only thing is that the therapy is only offered in Quebec Canada or Belgium Europe. The cost is 7500.00 for one week of training. That training will be continued at home. That doesn't include airfare, motels, etc. If I think it's worth it, I'll just have to have another fundraiser. If we can raise 2500 in a few hours with little effort, I bet we can raise the funds if we (or I) put in a "lot" of effort. As soon as I find out more I'll post about it. If you are reading this and want to help, email me and let me know. You can even donate something to raffle or sell raffle tickets... Looks like I'm getting ahead of myself but I have heard so many wonderful testimonies about this therapy, I can't help to get excited. Matthew has a lot of potential and I want to see it come out of him. Here are a few things about ABR Therapy. The video tape is suppose to have some "before" and "after" videos included. I was told that I would be shocked. Matthew didn't asked to be born like this so it's up to us to do everything possible to help him live a more comfortable life in the body he has while he is here, no matter what the cost. 
Check out this site! Before and After pics. THe Before reminds me so much of Matthew.
"http://www.abrbelgium.com/index.htm"
Testimonials (Some from people I talk to in our support groups)
http://www.fondationnicolastrozzo.com/Testimonials.htm
What is ABR ?
ABR stands for Advanced Bio (biology) mechanical (mechanics) Rehabilitation.
What is ABR?
ABR is your hands-on set of tools for changing your child’s body structure.
ABR is a significant breakthrough in the field of brain injury, which opens a new range of opportunities for the structural recovery of muscoloskeletal system and restoration of motor functions in normal spontaneous ways.
Keywords in ABR language.
predictable changes into the structure
control over the plasticity of muscular and skeletal systems
hierarchical progress of motor functions
development of bio-mechanical maturity
ABR makes you a sculptor of your child’s body.
ABR is ...
Rehabilitation states that this approach aims at recovery of physical and social abilities of the persons whose motor functions are seriously impaired.
Biomechanical is the term describing mechanical properties of biological systems. It also identifies the biomechanical philosophy of analysis of living beings as opposed to bioelectrical (neurology) and biochemical (metabolism) philosophies that currently dominate medical science.
Advanced makes the claim that ABR is a significant step forward compared with other approaches aimed at motor functions rehabilitation. In fact, ABR allows a new dimension in the treatment of the most severe motor dysfunctions.
Does ABR look for functional goals?
Yes, of course it does.
After all, this is what everybody wants –
To see their children speaking, walking and doing normal
things with their hands, etc.
However, ABR believes that before achieving the functional results in the motor skills of your child, the underlying structure of the muscular and skeletal system has to be "good enough" for the performance of unrestricted movements..
Stop blaming the brain!
Recovery of electrical connections
FOLLOWS
bio-mechanical reconstruction.
ABR does not disregard the importance of proper electrical integration in the brain. Without such re-integration the motor function recovery is impossible.
To “repair” the brain would be nice but it is still science fiction.
The essence of ABR philosophy is very simple - stop blaming the brain!
The last 500 years has shown very little progress in the rehabilitation of motor function in cases of brain injuries.
We believe the majority of the medical professionals understand that the results are poor but they have chosen to blame the wrong cause for this.
ABR statements are as follows:
Ø Irreversibility of initial structural brain damage does not make the situation with motor function recovery intrinsically hopeless.
Ø The brain damage is not a critical obstacle for successful bio-mechanical reconstruction as long as the musculoskeletal system is addressed in a bio-mechanically proper way.
Ø The attempts to “repair” the brain do not have to be the first and primary goal.
Ø Even a “structurally repaired” brain would be unable to develop electrical integration necessary for proper motor functions unless the bio-mechanical structure of the musculoskeletal system has been restored.
Ø The brain has so much electrical plasticity that it will take care of arranging the necessary electrical connections to integrate bio-mechanical structural improvements of the musculoskeletal system.
Check out this site! Before and After pics. THe Before reminds me so much of Matthew.
"http://www.abrbelgium.com/index.htm"
Testimonials (Some from people I talk to in our support groups)
http://www.fondationnicolastrozzo.com/Testimonials.htm
What is ABR ?
ABR stands for Advanced Bio (biology) mechanical (mechanics) Rehabilitation.
What is ABR?
ABR is your hands-on set of tools for changing your child’s body structure.
ABR is a significant breakthrough in the field of brain injury, which opens a new range of opportunities for the structural recovery of muscoloskeletal system and restoration of motor functions in normal spontaneous ways.
Keywords in ABR language.
predictable changes into the structure
control over the plasticity of muscular and skeletal systems
hierarchical progress of motor functions
development of bio-mechanical maturity
ABR makes you a sculptor of your child’s body.
ABR is ...
Rehabilitation states that this approach aims at recovery of physical and social abilities of the persons whose motor functions are seriously impaired.
Biomechanical is the term describing mechanical properties of biological systems. It also identifies the biomechanical philosophy of analysis of living beings as opposed to bioelectrical (neurology) and biochemical (metabolism) philosophies that currently dominate medical science.
Advanced makes the claim that ABR is a significant step forward compared with other approaches aimed at motor functions rehabilitation. In fact, ABR allows a new dimension in the treatment of the most severe motor dysfunctions.
Does ABR look for functional goals?
Yes, of course it does.
After all, this is what everybody wants –
To see their children speaking, walking and doing normal
things with their hands, etc.
However, ABR believes that before achieving the functional results in the motor skills of your child, the underlying structure of the muscular and skeletal system has to be "good enough" for the performance of unrestricted movements..
Stop blaming the brain!
Recovery of electrical connections
FOLLOWS
bio-mechanical reconstruction.
ABR does not disregard the importance of proper electrical integration in the brain. Without such re-integration the motor function recovery is impossible.
To “repair” the brain would be nice but it is still science fiction.
The essence of ABR philosophy is very simple - stop blaming the brain!
The last 500 years has shown very little progress in the rehabilitation of motor function in cases of brain injuries.
We believe the majority of the medical professionals understand that the results are poor but they have chosen to blame the wrong cause for this.
ABR statements are as follows:
Ø Irreversibility of initial structural brain damage does not make the situation with motor function recovery intrinsically hopeless.
Ø The brain damage is not a critical obstacle for successful bio-mechanical reconstruction as long as the musculoskeletal system is addressed in a bio-mechanically proper way.
Ø The attempts to “repair” the brain do not have to be the first and primary goal.
Ø Even a “structurally repaired” brain would be unable to develop electrical integration necessary for proper motor functions unless the bio-mechanical structure of the musculoskeletal system has been restored.
Ø The brain has so much electrical plasticity that it will take care of arranging the necessary electrical connections to integrate bio-mechanical structural improvements of the musculoskeletal system.
We had Casey's Graduation and Farewell party tonight. That's Farewell for 13 weeks until he gets back from Marine Boot Camp.
He mostly received cash since he can't take nothing but the clothes on his back and about 20 bucks with him to boot camp. The party was held at Bible Holiness Church Fellowship Hall. Our Church. The church my mother raised me in and also where Casey was raised by me.
Matthew's had a bad seizure right before medicine time. That lamictal is making it worse since we upped it. I'm calling the neuro tomorrow.
We took a "family" pic if you want to check it out. It's funny. I finally get us all together in one place and this is how everyone acts. I don't know what in the world Korey was doing with his face in one of those. Of course Matt was playing around. He has ears on everybody in every I tried to take this weekend. Ha. ha. Well I guess that's us. Nothing fake about his pic.
The CornFlake Family
I am going to bed early tonight. I didn't make it early last night I played around with this website too long! So GOOD NIGHT. Please leave comments in the comment box so Matthew and I can know who's reading his web site.
Charlotte and Matthew
PS. Matthew is a good babysitter. He is kissing on MaKayla at the party. She is 3 mos old but was born 2 months early. AWWWWWWWWWWWWWWWWWEEEEEEEEEEEEEE!!!!!!!!!
He mostly received cash since he can't take nothing but the clothes on his back and about 20 bucks with him to boot camp. The party was held at Bible Holiness Church Fellowship Hall. Our Church. The church my mother raised me in and also where Casey was raised by me.
Matthew's had a bad seizure right before medicine time. That lamictal is making it worse since we upped it. I'm calling the neuro tomorrow.
We took a "family" pic if you want to check it out. It's funny. I finally get us all together in one place and this is how everyone acts. I don't know what in the world Korey was doing with his face in one of those. Of course Matt was playing around. He has ears on everybody in every I tried to take this weekend. Ha. ha. Well I guess that's us. Nothing fake about his pic.
The CornFlake Family
I am going to bed early tonight. I didn't make it early last night I played around with this website too long! So GOOD NIGHT. Please leave comments in the comment box so Matthew and I can know who's reading his web site.
Charlotte and Matthew
PS. Matthew is a good babysitter. He is kissing on MaKayla at the party. She is 3 mos old but was born 2 months early. AWWWWWWWWWWWWWWWWWEEEEEEEEEEEEEE!!!!!!!!!
My oldest son Casey, (Josh) graduated from High School tonight. We are all so proud of him. Matthew went with us and was a perfect angel. We were very close to getting rained out. There were bad thunderstorms all around us! Here are some bragging pics for everyone to see. Boy do I feel old!
Proud mom and dad.
Casey and his sister Mary
Casey and Grandma and Grandpa Pugh, Granny Kappler, Aunt BJ, Stephanie, Tabitha, Rebecca and Steven.
Casey and Matt (Matthew's Daddy)Good Night! I gotta get some rest before Matthew decided to get up!
I am currently adding Links to our Blog. I'm having a little trouble with the html code. I did finally finish the web page design. Please bare with me on the Links while I try to figure it out.
Matthew is doing "pretty good". Considering those nasty Tonic seizures. He's having less myoclonics but more of the tonics. The myoclonics are coming in clusters. Usually around Five thirty in the morning and when he wakes up from naps. The tonic seizure (staring siezures) are scary. They usually last only a few seconds but they make him weak afterwards. He even had two in the swimming pool today. The only thing the neuro suggested was to up his Lamictal. I don't think it's doing any good.
I just hope he doesn't have a grand mal. If he does, I am prepared. I have some Diastat Suppositories. (valium enema) if they last more than five minutes then we take him to the hospital. These siezure don't affect his breathing as far as we can tell. The neuro says they are not the seizures that cause further brain damage.
He is doing good as far as not being sick in a while.
WE have a lady coming now three days a week to help. She is great. Her name is Ms. Martha. She is really patient and loves Matthew. She is 29 and has no kids of her own. She took care of her mom for 14 years before her mom died last January. She was given custody of her mom at age 14 just so she wouldn't be put in a nursing home. Somehow she was able to do this by being emancipated.?? I brought her two jars of the stage 3(that's the big jars!) baby food thinking that I would have a little food left over for supper but she fed him every drop by spoon. Matthew's belly was swollen up. Reminded me of a puppy who just finished nursing. It was so funny. He belched really loud and he felt like he weighed five lbs more! He was limp and ready for a nap. She said she though he was suppose to get all of it. I told her if he ate it that was great! If he makes this a habit I will not be able to afford Martha because I'll be spending 600 a month on baby food!!!! lol
Well, Casey graduates from High School tomorrow night. Then he's off to Paris Island Boot Camp July 11th. I am going to miss him. He has been the best kid a mom cold ever ask for. (As far as I know but what I don't know won't hurt me. ha)
I'm just glad he's got a clear head on his shoulders and sticks to his guns. He's the type that when he sets his mind to something it gets done but if he's not interested, he won't even try. He has always been a big help to me.
When he was four years old, I can remember him carrying Korey's diaper bag and my purse for me up the stairs to our small run down apartment after I had worked all night. He always wanted to carry it for me, even when he had been asleep at the babysitters, he would wake up and "zombie" walk to the car and he would grab korey's diaper bag and my purse and hold my hand while I held Korey. (I didn't dare wake korey up.) Those two are like night and day!
I feel old but Matthew keeps me young and keeps me on my toes. I wish Matthew could go to school and graduate and have a family but it's ok if he can't. He wasn't born to be like normal people. He's unique and will forever be our Baby Boy.
I'm waiting on kids to get home. Casey went to a party. I hate those parties before graduation. So many things can happen. I gave him my speech and reminded him not to "mess up". Korey is suppose to be home any minute. Curfew is almost up!
Good Night, I am tired and worn out.
Charlotte
Happy Mother's Day!
For our Mother's Day Service at church, I was asked to write a poem or something from Matthew to me. That only seems propers since I am Matthew's voice, arms , legs. etc. So here it is. My husband read if for me in church.
From your "other" half.
To Ganny From Matthew
I don't have to see you to know who you are. I know you by the sound of your voice and the touch of your hand.
I don't have to see you to know that you love me because I can feel it all around me whenever you hold me. I just don't feel it a lot when I'm laying all by myself so that's why you have to pick me up, that's why I cry when you lay me down, I don't think it has nothing to do with being spoiled.
I don't have to walk or crawl with you because you will carry me or push me in my chair. I don't have to stay home because I cannot walk, you take me everywhere. I have been on an airplane and got to ride with the Pilot and I have ridden on a boat on the middle of Lake Michigan and stayed in a four start Hotel and snuggled with you on feather downed mattresses and pillows. You held me on the top of the sears tower and I have been on a Big Red Fire truck and I have been on sliding boards in the park. You even let me play and walk barefoot in the grass sometimes. You let me ride on the carousale at walmart almost everytime we go. I go to the archade and walking in the park. I go swim- swim almost everyday, even in the winter. You take me to Church and let me go in your Sunday School Class. Oh, I like to go to garage sales too. I have done things that some kids have never gotten to do. My Ganny has big muscles so she can carry me.
I don't have to be able to talk but I know what stuff means. Like nodding my head "yes" or "falling down" when you play ring around the rosies with me. You are my voice, you know exactly what I need without me having to tell you. You sing to me and you dance with me all the time. I love music and you help me clap my hands, I love to clap. I especially love to hear other people clap for me.
Every time you roll over at night, you roll me over too. You take me to all my doctors appointments and keep me healthy and safe. We take baths together and you help me splash water all over the bathroom and you let me jump on the bed. You help me use the potty like a big boy. You read me books and sing to me all the time. You feed me good so I don't have to get a feeding tube.
You say my night prayers with me everynight. You bring me a warm bottle of apple juice and rub my head if I can't go back to sleep. You don't even get mad at me if I get up at 2AM and want to play.
I just want to say Thank You Ganny for taking care of me. I also want to say thank you to PaPa John because he loves me too and so does Uncle Casey and Uncle Korey and mom and dad and ggpa and ggma pugh and ggpa and ggpa Boatman.... When God sent me here on earth I was kind of worried but looks like God had it all planned out.
I know sometimes you all get tired and I just wear you out but just know that I love you and one day I will hold your hands while we clap, run, sing and dance and shout throughout eternity.
Love "Your other Half".
Matthew
For our Mother's Day Service at church, I was asked to write a poem or something from Matthew to me. That only seems propers since I am Matthew's voice, arms , legs. etc. So here it is. My husband read if for me in church.
From your "other" half.
To Ganny From Matthew
I don't have to see you to know who you are. I know you by the sound of your voice and the touch of your hand.
I don't have to see you to know that you love me because I can feel it all around me whenever you hold me. I just don't feel it a lot when I'm laying all by myself so that's why you have to pick me up, that's why I cry when you lay me down, I don't think it has nothing to do with being spoiled.
I don't have to walk or crawl with you because you will carry me or push me in my chair. I don't have to stay home because I cannot walk, you take me everywhere. I have been on an airplane and got to ride with the Pilot and I have ridden on a boat on the middle of Lake Michigan and stayed in a four start Hotel and snuggled with you on feather downed mattresses and pillows. You held me on the top of the sears tower and I have been on a Big Red Fire truck and I have been on sliding boards in the park. You even let me play and walk barefoot in the grass sometimes. You let me ride on the carousale at walmart almost everytime we go. I go to the archade and walking in the park. I go swim- swim almost everyday, even in the winter. You take me to Church and let me go in your Sunday School Class. Oh, I like to go to garage sales too. I have done things that some kids have never gotten to do. My Ganny has big muscles so she can carry me.
I don't have to be able to talk but I know what stuff means. Like nodding my head "yes" or "falling down" when you play ring around the rosies with me. You are my voice, you know exactly what I need without me having to tell you. You sing to me and you dance with me all the time. I love music and you help me clap my hands, I love to clap. I especially love to hear other people clap for me.
Every time you roll over at night, you roll me over too. You take me to all my doctors appointments and keep me healthy and safe. We take baths together and you help me splash water all over the bathroom and you let me jump on the bed. You help me use the potty like a big boy. You read me books and sing to me all the time. You feed me good so I don't have to get a feeding tube.
You say my night prayers with me everynight. You bring me a warm bottle of apple juice and rub my head if I can't go back to sleep. You don't even get mad at me if I get up at 2AM and want to play.
I just want to say Thank You Ganny for taking care of me. I also want to say thank you to PaPa John because he loves me too and so does Uncle Casey and Uncle Korey and mom and dad and ggpa and ggma pugh and ggpa and ggpa Boatman.... When God sent me here on earth I was kind of worried but looks like God had it all planned out.
I know sometimes you all get tired and I just wear you out but just know that I love you and one day I will hold your hands while we clap, run, sing and dance and shout throughout eternity.
Love "Your other Half".
Matthew
Subscribe to:
Posts (Atom)
