Heard From TCH

[admin]

Well, on Thursday, we arrived home from Alyssa's OT and I had a message on my machine to call Lisa Davis at TCH. She said Dr. Nath recommends bicep lengthening for Alyssa now, She had the mod quad done June 20th last year. She said we could chose when to have it done, but if it wasnt done soon to get her an elbow extension splint until then. We decided that we will wait until summer. I dread her being splinted in the summer, but I talked to Lisa and let her know that Alyssa is starting t-ball next month and also that her father & I are getting married so she said we can wait until after we get married, which is June 2nd BTW! I called yesterday and Alyssa is schedule for June 24th...Lisa said she will have a splint similar to the mod quad. School starts about 7 weeks after she will have this done so hopefully she will have her splint off then.
I am also going to check into getting a bathing splint for her. She has very long hair and we waited & waited last time to as far as washing it goes. We did put her up on my moms kitchen counter a couple of times and uses her sprayer because her hair really needed it.
If anyone has any advice or info on the bicep lengthening, please share it with me so I know what to expect. Thanks!

Jeanne
Mom to Alyssa Ann 10/19/95
& Kayla Dawn 3/14/00

[blakesmom]

I've heard lots of great feedback about the bicep lengthening, my son Blake had it done 2 weeks ago along with the capsulodesis. His arm is splinted straight out to the side, 90degrees. He complained about elbow pain the first couple of days, but the pain has subsided, and let me tell you, it is such a great feeling to finally see that arm so perfectly straight!!!! I hope it helps when splinting is over, I know we will probably have to have him wear an extension splint at bedtime, but I know he will be proud of his straight arm. Best of luck to you!!(Blake is 4 by the way)

[francine]

I wrote to you about this in email but I want to make this comment here, too. There are good points and bad points to the concept of the bathing splint.

We were thinking of doing it at TCH originally (because of Christy's post about how hard bathing was) but there was no way Maia could tolerate them making two splints at one time. And we certainly were not going to stay another day just for another splint - so you need to have an expert and willing therapist at home to make it for you. Mine had to be convinced and wasn't real positive about the whole thing (made me angry that she wouldn't want to do something positive for my child!)

I did it because it might help Maia sleep which wasn't happening at all. It worked for one night then we were back to being up all night again.

The velcro doesn't work in the water - the glue comes off. Glue guns don't do it and neither does waterproof glue. It was the nature of the material that the slint is made out of.

The bathing splint was made out of aquaplast because it doesn't melt as easily in the warm water- it needs to be in boiling water whereas the splint that TCH uses melted down just when we had maia in a lukewarm baby sitz bath. So it's this aquaplast that doesn't work with the velcro tape or glue gun glue or adhesive.

We ended up wrapping Maia up in the splint with compression bandages left over from her primary and an ace bandage to hold her arm in and that worked out fine...but I'll tell you that the whole process was a minimum of 2 hours start to end.

We also used Tegaderm to cover Maia's two incisions. (Tegaderm is really expensive)

The other thing was that Maia din't want her arm wet - the splint had no padding in the inside and she didn't like the feeling. Maybe your therapists could spend more time with the splint and make it work better (than ours did). I would suggest padding in the inside - and then after the bath just towel dry it and it will be dry by the next day.

So good luck! Hope your therapists are more open to it than ours were and hope they do a nicer job too! (big sigh)

-francine

[Mom of Kelsey]

Hi Jeanne, I would like to know how this bicep lengthening goes.(many thanks to Francine for letting me know the name of the surgery. I didn't write it down while Dr.Nath and I spoke of it and couldn't for the life of me remember what it was called so thanks Francine) Kelsey goes back to TCH in July to find out if she will be needing it. Dr. Nath was sure she would when we were there last but wanted to wait for her 1 yr post Mod Quad to tell for sure. So I am again looking into this surgery. I see lots better movement with her upper use but as far as the elbow goes I have yet to see any improvements.. Keep us updated, I sure hate to hear about another child going through all of this. take care ~ Denise