The tendons are very tight. Even with physical therapy, Botox, hippotherapy and water therapy they have not gotten worse but not better. The doctor at Shriners said that she could guarantee that they would eventually pop all the way out of socket as he got older. The ball joints are actually further apart from the hip sockets that I could draw them. When he stands, you can't hardly get a flat palm between them.
We've been avoiding the surgery because of the seriousness of it. It will mean 3-4 days hospital stay. He will be put in a hip Spika cast. That's going to be a nighmare in itself. After six weeks we go back and stay for two weeks of intense physical therapy.
I am comfortable with the surgery being done at Shriners. They know what they are doing and If I had any questions they answered them all and then some. Unlike the hospital in Jackson where they sent Matthew home with Pneumonia and a fever. I also found out that they never consulted with his Neurologist or Endochrinoligist or even did a levels test on all the seizure meds he has to take. That is a MUST for me before Matthew has any type of surgery but I had to learn the hard way. Shriners requires a Consent form from both of those doctors before they will do any type of surgery on a child. They have to have a levels test exactly seven days before surgery.
I feel everthing is going to be fine but I know from what I have heard that its going to be rough but it's going to be worth it. He's a tough little guy and I have no doubt he'll do more than we ever thought he would after the surgery. Even if it just keeps him out of pain or makes him able to sit or walk better in his walker it will be worth it.
Im going to bed. Im not feeling well. Hope Im not getting sick. I don't have time for it.
Charlotte
(Warning, you may not want to read if you are not ready to read about funerals).
Another funeral today. This time for a 38 year old man. Someone I knew a long time ago, about 20 years but someone I had met again about a year ago. He had heart failure, diabetes, lung problems, blood clots, etc. He had come to our church to "get things right". We are happy to know that he did make things right with God before he was called home.
I really try to avoid funerals, especially since Matthew was born. In my mind I don’t won’t to go near a funeral home, much less to a funeral of someone so young. I was very upset whenever a new funeral home was built not far from my house. I have to pass by it every time I go anywhere. It never fails that whenever I go towards the casket at a funeral, my mind starts racing and I immediately start thinking about Matthew. Imagining it’s Matthew’s funeral. I know that’s awful but It’s the truth. I can’t help it. I didn’t have to sing at this funeral but I have sang at many during the last few years. Each funeral it gets harder and harder for me to say I’ll go. I will not go to a funeral where there is a death of a young child. Now, I say that but who knows what I’ll do if I ever have to make that choice.
My best friend since I was about three years old died at age 30 about 7 or 8 years ago. That was the hardest funeral I had to attend. He had a wife, and two very young children. He had a blood clot go to his heart from complications of a laser surgery used on his knee. It was a great loss for everyone. He was a wonderful man.
One thing that I noticed was that when I made my way to the casket at his funeral,was that it looked like him but it wasn’t. I then realized what it meant when the Bible talks about the soul of a man and the shell of that man. The shell is just something his soul lives in until God calls them home. That’s what it looked like, a shell. I could see or feel none of his spirit that I felt when I was around him. Kind of like when you see the locust shell stuck on tree, just a shell, no life or spirit. The only thing that really shocked me was the BIG smile the morticians had put on his face. It was really too big of a smile, but that was how he was when he was alive. He had always had a smile that went from ear to ear. That’s really the only thing that made the shell in the casket look like my best friend and that's what made the funeral so hard for me.
It was the same today after I cleared my mind. Just another shell. No smiles this time.
It’s good to know that the my faith in God and His Word helps me in times like these. What about people that don't know or believe in the soul and the shell of man? How do they cope?
Another thing. What do I want people to remember me for when I die? I mean, I could die tonight. We are not promised tomorrow. I don’t want to leave this world without knowing I made a difference in someone’s life. Not remembered for my material possessions because I surely don’t have a lot of those. When should we prepare for death? When we are older? No way, not me. It’s now or it could be never. It’s hard to prepare ourselves for something we don’t even like to talk about. I can say now that If Matthew goes home before I do, it won’t be like a traditional funeral. It will be sad but it will be filled with Balloons, NO FLOWERS that only die after a few days, Teddy Bears and Bells. His little soul and sweet spirit will be all around us and he'll see us celebrating his life even though we will mourn his beautiful "shells" death. Not a lot of sad music, maybe The Wiggles, Head Shoulders, Knees and Toes and Angel Among Us. I’ll read all the poems he inspired me to write and try to sing the songs he gave me and other people can share memories they made with him. Maybe like the time he bit them because Im pretty sure he has bitten everyone now, including me again tonight on my shoulder. Or how he always smiles every morning when he wakes up with the biggest toothiest smiles you've ever seen. I have lots of things I want to do like make a short film on his life, his happy times and how he made it through when no one thought he could. I hope my funeral can be more of a celebration than a funeral. It’s hard to think of it that way but I believe it can be done. A happy and a sad time instead of all sad.
Good Night
Charlotte
Another funeral today. This time for a 38 year old man. Someone I knew a long time ago, about 20 years but someone I had met again about a year ago. He had heart failure, diabetes, lung problems, blood clots, etc. He had come to our church to "get things right". We are happy to know that he did make things right with God before he was called home.
I really try to avoid funerals, especially since Matthew was born. In my mind I don’t won’t to go near a funeral home, much less to a funeral of someone so young. I was very upset whenever a new funeral home was built not far from my house. I have to pass by it every time I go anywhere. It never fails that whenever I go towards the casket at a funeral, my mind starts racing and I immediately start thinking about Matthew. Imagining it’s Matthew’s funeral. I know that’s awful but It’s the truth. I can’t help it. I didn’t have to sing at this funeral but I have sang at many during the last few years. Each funeral it gets harder and harder for me to say I’ll go. I will not go to a funeral where there is a death of a young child. Now, I say that but who knows what I’ll do if I ever have to make that choice.
My best friend since I was about three years old died at age 30 about 7 or 8 years ago. That was the hardest funeral I had to attend. He had a wife, and two very young children. He had a blood clot go to his heart from complications of a laser surgery used on his knee. It was a great loss for everyone. He was a wonderful man.
One thing that I noticed was that when I made my way to the casket at his funeral,was that it looked like him but it wasn’t. I then realized what it meant when the Bible talks about the soul of a man and the shell of that man. The shell is just something his soul lives in until God calls them home. That’s what it looked like, a shell. I could see or feel none of his spirit that I felt when I was around him. Kind of like when you see the locust shell stuck on tree, just a shell, no life or spirit. The only thing that really shocked me was the BIG smile the morticians had put on his face. It was really too big of a smile, but that was how he was when he was alive. He had always had a smile that went from ear to ear. That’s really the only thing that made the shell in the casket look like my best friend and that's what made the funeral so hard for me.
It was the same today after I cleared my mind. Just another shell. No smiles this time.
It’s good to know that the my faith in God and His Word helps me in times like these. What about people that don't know or believe in the soul and the shell of man? How do they cope?
Another thing. What do I want people to remember me for when I die? I mean, I could die tonight. We are not promised tomorrow. I don’t want to leave this world without knowing I made a difference in someone’s life. Not remembered for my material possessions because I surely don’t have a lot of those. When should we prepare for death? When we are older? No way, not me. It’s now or it could be never. It’s hard to prepare ourselves for something we don’t even like to talk about. I can say now that If Matthew goes home before I do, it won’t be like a traditional funeral. It will be sad but it will be filled with Balloons, NO FLOWERS that only die after a few days, Teddy Bears and Bells. His little soul and sweet spirit will be all around us and he'll see us celebrating his life even though we will mourn his beautiful "shells" death. Not a lot of sad music, maybe The Wiggles, Head Shoulders, Knees and Toes and Angel Among Us. I’ll read all the poems he inspired me to write and try to sing the songs he gave me and other people can share memories they made with him. Maybe like the time he bit them because Im pretty sure he has bitten everyone now, including me again tonight on my shoulder. Or how he always smiles every morning when he wakes up with the biggest toothiest smiles you've ever seen. I have lots of things I want to do like make a short film on his life, his happy times and how he made it through when no one thought he could. I hope my funeral can be more of a celebration than a funeral. It’s hard to think of it that way but I believe it can be done. A happy and a sad time instead of all sad.
Good Night
Charlotte
Some of the jerks start off looking like "startles" or "falling" reactions. Kind of like when you lay a newborn on his/her back with no clothes on. They look like they are falling and there arms and legs fly up in the air. They throw their hands up as if they need to grab on to something. Well that's how Matthew's started out when he was one year old. The neuro didn't call them Myoclonic then, he called them something else I can't recall the name. He was put on 60 mg of topomax. It stopped them because it kept Matthew groggy and like a zombie.
HE started this six months ago: Any little noise would scare him so bad, he would jerk. Most of his was noticed when waking up in the morning or from a nap. You have to be really quiet when you first go to his bed to get him up. It's the least we can do for him considering his blindness. I thought that was why he was having the jerks because we were not letting him know we were coming or just touching him would scare him if we didn't say something to let him know we were close by.
Well, this turned into more jerks every morning, every time he woke up, even from his naps. Jerk after Jerk after Jerk. Sometimes as many as 50 in an hours time.
When he has the jerk, he looks up over his shoulder as if he was looking to see who was "plucking" him on his head. IF he's in his walker or standing up, his knees buckle and his head drops. He never loses consciousness and the doctor says they arn't hurting him but they make Matthew irratable.
Next he started having them when he was going to bed at night or going to sleep for a nap. Not as many when falling asleep but enough to keep him from going to sleep sometimes.
I did some research and found that diet has a lot to do with seizures. Some are even treated with a high fat no sugar diet. That got me to thinking. The same time we switched from infant formular to pediasure was about the time his jerks started.
Pediasure is loaded with sugar! He was on it about 4 mos before I realized the connection. I took him off the pediausure for two weeks. His jerks were less and less every day. We switched back to infant formular, added Polyvisol vitamin drops and one half tums with calcium to make up for some of the vitamins missing when I stopped the pediasure. The neuro also put him on Lamictal an he is totally weaned from the Topomax after about 4 months of slowly reducing it.
To confirm my experiment, I gave him a bottle of pediasure before nap time after he had been off of it for two weeks. When he woke up he had about 45 jerks. That told me it had something to do with the sugar.
The less sugar I give him the lesser the jerks. I took him off the pediasure before the full dosage of Lamictal was given so I am positive it was all the sugar in the pediasure.
We have switched back to the infant formular, as only a suppliment and he's doing much better.
If I could get him totally off the sugar, I believe he would be seizure free. That's what Im working on now. I use Splenda (made from sugar) in most of his food and drinks. His phenylbarbitol is loaded with sugar too but there's not any thing I can do about that.
Things like diet and sugar were never mentioned to me by his neuro. I wonder why? I'll be asking next time we go back.
I have learned to always try home rememdies before loading your child up on antibiotics or seizure medicines. Of course I had to learn the hard way. His croup virus is almost gone except for a little runny nose.
Well I am exhausted. We are heading to Shriners Hospital tomorrow for more botox shots. Maybe. Last time we were there they said his legs were not worse but not better either. I plan to ask them about casting.. Something else that could delay tendon release surgery as long as possible.
I am going to bed now. Good Night.
HE started this six months ago: Any little noise would scare him so bad, he would jerk. Most of his was noticed when waking up in the morning or from a nap. You have to be really quiet when you first go to his bed to get him up. It's the least we can do for him considering his blindness. I thought that was why he was having the jerks because we were not letting him know we were coming or just touching him would scare him if we didn't say something to let him know we were close by.
Well, this turned into more jerks every morning, every time he woke up, even from his naps. Jerk after Jerk after Jerk. Sometimes as many as 50 in an hours time.
When he has the jerk, he looks up over his shoulder as if he was looking to see who was "plucking" him on his head. IF he's in his walker or standing up, his knees buckle and his head drops. He never loses consciousness and the doctor says they arn't hurting him but they make Matthew irratable.
Next he started having them when he was going to bed at night or going to sleep for a nap. Not as many when falling asleep but enough to keep him from going to sleep sometimes.
I did some research and found that diet has a lot to do with seizures. Some are even treated with a high fat no sugar diet. That got me to thinking. The same time we switched from infant formular to pediasure was about the time his jerks started.
Pediasure is loaded with sugar! He was on it about 4 mos before I realized the connection. I took him off the pediausure for two weeks. His jerks were less and less every day. We switched back to infant formular, added Polyvisol vitamin drops and one half tums with calcium to make up for some of the vitamins missing when I stopped the pediasure. The neuro also put him on Lamictal an he is totally weaned from the Topomax after about 4 months of slowly reducing it.
To confirm my experiment, I gave him a bottle of pediasure before nap time after he had been off of it for two weeks. When he woke up he had about 45 jerks. That told me it had something to do with the sugar.
The less sugar I give him the lesser the jerks. I took him off the pediasure before the full dosage of Lamictal was given so I am positive it was all the sugar in the pediasure.
We have switched back to the infant formular, as only a suppliment and he's doing much better.
If I could get him totally off the sugar, I believe he would be seizure free. That's what Im working on now. I use Splenda (made from sugar) in most of his food and drinks. His phenylbarbitol is loaded with sugar too but there's not any thing I can do about that.
Things like diet and sugar were never mentioned to me by his neuro. I wonder why? I'll be asking next time we go back.
I have learned to always try home rememdies before loading your child up on antibiotics or seizure medicines. Of course I had to learn the hard way. His croup virus is almost gone except for a little runny nose.
Well I am exhausted. We are heading to Shriners Hospital tomorrow for more botox shots. Maybe. Last time we were there they said his legs were not worse but not better either. I plan to ask them about casting.. Something else that could delay tendon release surgery as long as possible.
I am going to bed now. Good Night.
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