Ivelisse or Francine

[LeeAnne]

Are there any updates on Jocey on injured newborn.com? I would like to keep up with her progress since it has been suggested for Michaela.Was talking to Leslie McKibben about it yesterday. Michaela had a 90 minute TES eval yesterday and Leslie was surprised by all the new hand function and agrees we have time to wait especially since she's still gaining function. She was also awe struck at Michaela doing a jumping jack! Right now we're trying to get a second TES machine so we can do the whole arm and shoulder every night instead of changing electrode placements every 3-6 months. Thanks for keeping us informed! LeeAnne

[francine]

Lee-Anne I'm going try to reach Ivelisse.... the last I had heard she was going to give me an update and also told me that they had some plans to move to Florida. I would guess that Jocey is doing great because mom only came to the boards when there were things that she needed support for. I'll let you know when I reach her.

There are more children having the gracilis transfer... when we were there for the seminar, I think there were a couple of kids that week that had it. So I may email Lisa T or D to see if they can ask the families if they want to post their info.

-francine

[francine]

my comment about when mom came here was NOT a dig....
it was actually a positive statement that came from the last time I spoke to Ivelisse in which she told me that she was getting on with her life for the first time in years and was enjoying herself and doing things she hadn't done in a long time. Just want to make sure nobody read anything bad into what I said.

[LeeAnne]

I totally understood what you meant. Just in case anyone wonders, I'm really interested in how they're doing not just because I need info. If she's moving here to Florida, maybe i could meet up with her!

[JaimeC]

Fabulous. Please let me know when/if you hear about any other kids (that want to talk about it!) We're meeting with Dr. Klebuc April 4 to discuss the gracilis transfer. I need more information! Thanks!
Jaime

[NancyP]

We met with Dr. Klebuc last April, and this is in Kelsey's near future. We are waiting on them to read some results from an EMG and NCT Kelsey had a week or so ago to determine if she needs an intercostal graft before the gracilis transfer.

[LeeAnne]

Michaela had 4 intercostal nerve grafts at the age of 11 months and 3 weeks. That's what we think she is still getting function from in her hand. She has never stopped getting hand function all along.Actually the nerve grafts alone I don't think could have done it. I believe the TES we use on her at night has increased those odds. She is actually picking up small beads with her left hand and she did many things at Leslies Monday that she couldn't do before. I don't want to face this surgery if we don't have to.We just need to watch and make sure she doesn't plateau.

[NancyP]

Kelsey has only had the primary nerve graft. Dr. Nath has been talking about intercostals for a couple of years now, but we have had to have biceps and caps done first. I hope they decide soon. I don't want Kelsey in a splint all summer!

[JaimeC]

Could someone explain what intercostal grafts are? I've not heard of these....

[admin]

Could someone also explain gracilis transfer? What is this surgery done for? Goals? How do they determine the need for it?