Posted by Barbara on July 14, 2003 at 14:24:52:
Hello from Maine,
I have read many of the messages in the guest book--which has given me some hope--I have a almost 14 y.o. son who was diagnosed 4 years ago with MM. He had a stroke that effected his left side and he is now right-handed. He has begun to have some involvement on the left side of the brain. When he was 3, he had transverse myelitis which left him temporarily paralyzed from the waist down. He recovered from that and a few months later had another "bout" of TM--which the doctors said was very rare--his neurosurgeon now knows that was probably both a spinal stroke both times. The last one in 93 caused him to lose his ability to walk. We think he has had MM since shortly after birth, because he has had difficulty with words from the beginning but uses sign well, gesture and can hear well.
He is now facing a hip derotational surgery to help his hips and legs--which have become knock-kneed--many people upon seeing him thinks he has CP. He is a happy, social boy who uses sign, augmentative communication and has a great love of life. I am afraid of this hip surgery because of the loss of blood. It's being done at Children's in Boston where all his MM surgeries have been done with Dr Scott. We've had many consultations and they know it's a very bloody surgery so they will have an interoperative EEG monitor, transfusion etc. Still I'm scared that the surgery may help him have straighter legs, be able to walk, more comfort (he is mostly in a wheelchair now), BUT cause a stroke---the recovery time is one year.
So I am wondering --has anyone out there had a serious ortho or other type of surgery? Any help, advice etc would be great. He wants to have the surgery (although I know he is worried) because he has a desire to play hockey on the disability team.
Also, I am curious about energy levels--since Greg can communicate about his feelings in a limited way, I don't know a lot about how he feels physically unless it is something concrete (like a rash/infection etc). He's often sleepy during the day, and also has immense difficulty going to sleep. I've taken him to the sleep clinic at Children's too and that was helpful.
Anyone with kidney issues? He has renal tubular acidosis and hydronephrosis too.
His hip surgery is a month from today and I'm getting anxious.
Thank you for reading this.
Barbara