Caralyn has movement!!

[alaskanmom]

Thank you everyone. Everyday she comes home from school and says "hey watch this" she keeps discovering more movement, and everyday she plays with it making it stronger (she gets bored in class, so she plays with her arm, haha) We are all very proud of her and her positive attitude. We are going back to Mayo on June 9-16 for sure and possibly longer if there are additional tests they want to do. I really appreciate everyones support at the BPI camp, I was in a really bad slump at that point, doubting that I had done enough to give her the best chance and then at the same time I had done too much by putting her through the surgery in the first place. But I came to realize that even if she never got anything from the surgery at least we tried everything and she has the battle scars to prove it. Again, thank you everyone for being there and listening to me whine and cry and then to jump for joy.
Rene

[admin]

Please bring me up to date. When did she have surgery? What has been the course of her recovery? Did she feel pain to the area first, then sensation, then movement? My son had the same injury and had a nerve transplantation by Dr. Nath late February. I know it's too soon for movement but it seems the nature of his pain has changed. We are beginning to use e-stim. His knuckles are very stiff. I'll appreciate any and all feedback...thanks, Michele

[alaskanmom]

Caralyn had surgery at the Mayo clinic on March 7, 2005. She had sural nerves taken from her legs and transplanted. They spliced into her c5 from the opposite side to try to give her some shoulder and bicep. They couldn't use her phrenic nerves because of the damage to her lung. She never really got any new sensation she still cannot feel it but she can make it move towards her but not away. This all started to happen within the last month. We started to notice that she could swing her shoulder and arm a little more and had a little more control of which it swung when she walked. She did physical therapy for months afterwards and then she was doing the exercises at home. She does have a e-stim machine that she uses at home also. We were very, very fortunate that she never had the awful pain that alot of people had after this type of injury. She hasn't been on kind of medication since the surgery.
Rene

[admin]

Thank you...it takes a long time doesn't it? Sam's surgery was the end of February of 06. So, I guess it's much too early for us to expect to see anything. Were her nerves avulsed at the spinal cord? I can't see how she could have escaped the terrible pain. I'm so glad she did, however. It's very hard to see him doubled up in pain. He will have a spinal block next week. At least he's off the oxycodone. That was making him very dull. He also has a traumatic brain injury. It seems the methadone is the primary pain reliever but doesn't help significantly. Michele

[alaskanmom]

Sorry Michelle, that it keeps taking me so long to get back to you but I only get the computer every couple of days. Caralyn did avulse all the nerves from the spinal cord. She also had a traumatic brain injury but that is doing sooooo much better. She also had a number of other significant injuries that we actually feel very fortunate for what we do have. When she was in the hospital in ICU I used to tell God over and over that I would take her anyway that he would let me have her. Well it worked he gave her back to me better than ever and ready to take on the world. She was on a number of pain medications at first but within a month of being home from the hospital she took herself off of everything. She has had no residual pain since. We leave for the Mayo clinic tonight. We will find next week what else they want to do or can do for her.
Rene

[Karen McClune]

Hi Renee,

Wishing you and Caralyn a good trip tonight.

Keep us informed on what the doctors say about Caralyn, my thoughts go with you.

Love and hugs, Karen