another surgery

[Sandy]

Kaylin had her 1st visit to TCH post capsulodesis yesterday. She has an elbow contracture- well she has always had one and her shoulder is still a bit inwardly rotated. We have another surgery scheduled to try to correct the problem. I am having a really hard time w/ this decision. I want her to be as "normal" as possible and I have so much faith in Dr. Nath and his work, yet it is so hard to make another surgery decision for my little one. How much is enough and how much can they take? I am sure a lot of you feel the same way I do and every case is different. I just wish there was an easy answer to this whole problem- a one time "cure all" for the injury. If only it could be that simple!
Venting just a bit,
Sandy

[NancyP]

Sandy,

Kelsey has had 4 surgeries at TCH. She just had caps in April. She had her biceps legthened last July, and before that Mod Quad in November. In 17 months she had 3 surgeries (primary was 2 1/2 years before the Mod Quad). Not easy to say yes, but I don't want her to ever ask me why I didn't do everything I could to help her. She loves it when she gets her splints off and sees improvement. Her excitement over a little bit of new movement helps us make our decisions. Kelsey is 5.

Good luck and follow your instincts!
Nancy

[francine]

Sandy - I understand comletely where you are coming from - I feel the same way.

This is what we do - we try to make our decisions based on future. We always ask the question - if we don't do this now what will the consequences be for her future - will she regress - will more problems become apparent because of this. This way you can weed out the tweaks from the important procedures.

Maia is 6 months post caps also and I can't even get myself to send a tape in. She's out of pain - she progressing and I can't stomach even the mere possibility of thinking about something else. However if she got dislocated again - we'd be there in a flash - for the next opening. Don't want to see her in pain like last time.

Weigh the options.

-francine

[Sandy]

Thank you so much for your input! I was feeling a bit surgery happy and it is a big help to hear from other families experiencing the same things.

[Sandy]

I must say I wasn't suprised when Dr. Nath told me more surgery because we had talked about it prior to the caps in Dec. Kaylin was in pain too after her caps, but I think the older they get the harder the surgeries are- especially because they remember! I scheduled this next surgery for July and she will be splinted all over again. These kids are amazing- Kaylin's main concern when I told her about the surgery was the steri strips- it was a traumatic exp. getting them off this last time! I feel as though she is a lot tougher than I am and she is such a trooper since she is the one who has to actually go through all this.
Thanks for y'alls input!
Sandy