Well sorry that I am late with my update things have been busy. Dr. Moore is says that I am too skinny for my height and that I am short. So I have to go see another doctor his name is Aru. He is a GI doc. I saw him when I had my ilieostomy. They want to make sure that my belly is working right and to come up with ways to gain more weight, so my growth is no stunted. I am also being referred to another doctor at Children's in St.Paul. He is a bone and muscle doctor. They will do X rays and make sure that my bones are doing well. They are talking about putting me on baclofen that is an anti spastic to help with my tight muscles. I will probably start taking it at night to help me sleep. Mom has to stay up most nights and rub my legs because they hurt and get real tight when I try to sleep. Dr. Moore also gave me anew prescription for adivan to calm me because I get out of control. Mom and Dad don't like to give it to me but in the car there really is no choice. Moore recommends it because it is unhealthy for me to get so mad and then I can not control it.
On Tuesday all my therapist are coming to meet with me and mom. PT,OT,ST,Vision specialist and my school teacher. That will be a busy day. Nov. 2 I go back to the cities to see Aru and we are still waiting for my appointment with the bone and muscle doctor. I think that his name is Tamaguchi. November 9 mom is going to have surgery on her ribs so this is going to be a busy month. I will keep everyone posted as much as possible.
I want to thank grandma Kar for all the time that she spends with me. I love to sing and read books with my grammy Kar. I am off to bed for now. Good night.
Oh ya we are still working with insurance to get my gait trainer so I can learn to walk. I got letters from all my specialist to help out. Doctor Moore even put in his letter that I cerebral palsy (CP) so I hope that I get it.
Grandma Kar and I hanging out
Mom Dad and I at the hospital
Me early morning so sleepy
On Tuesday all my therapist are coming to meet with me and mom. PT,OT,ST,Vision specialist and my school teacher. That will be a busy day. Nov. 2 I go back to the cities to see Aru and we are still waiting for my appointment with the bone and muscle doctor. I think that his name is Tamaguchi. November 9 mom is going to have surgery on her ribs so this is going to be a busy month. I will keep everyone posted as much as possible.
I want to thank grandma Kar for all the time that she spends with me. I love to sing and read books with my grammy Kar. I am off to bed for now. Good night.
Oh ya we are still working with insurance to get my gait trainer so I can learn to walk. I got letters from all my specialist to help out. Doctor Moore even put in his letter that I cerebral palsy (CP) so I hope that I get it.
Grandma Kar and I hanging out
Mom Dad and I at the hospital
Me early morning so sleepy
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