United Brachial Plexus Network, Inc.

Kaylin is now 3wks post capsulodesis. We barely got those steri strips off, with alcohol, this past weekend. Kaylin screamed like you cannot even imagine- there has to be an easier way when you cannot soak them in soapy water(since the splint can't come off at all).

Kaylin is going on about life as usual even with the splint on- her splint is exactly like the statue of liberty splint she wore after the mod quad. I am so worried that the capsulodesis will be undone. I see movement in the shoulder when I adjust the splint which I did not expect. Dr. Nath says that it should be fine as long as her splint stays on. We expect so much and the wait is so long!

I feel as though I am on an emotional roller coaster. After each surgery all the anger(towards the OB), sadness, exhaustion seem to roar their ugly heads just a little stronger than usual- yet I am so thankful that there is help for Kaylin. Since our kids will live their whole lives with this injury, will our hearts ever heal? I am beginning to think that mine will never heal.

Sandy

I think that time will heal 'some' of it - but not 'all' of it. We had a counselor who came to our one and only support group meeting - she, herself, had a special needs child and she said that she doesn't believe that the grief will ever go away. Even when they are out of the house and living on their own, you will always be thinking about 'how is their arm doing, are they doing their exercises, are they in pain, etc.'

I am right there with you Sandy. The time before and after a surgery is the worst on the parents for anger and emotions. The anger is so bad it's hard to function on a day to day basis. I told my husband that when Maia is out of her splint and can sleep normally again, that I want to go out some weekend night to a comedy club. We need to do something to shift out of this. At least we can get a 2 hour respite.

We had luck with our steri strips this time- they fell off by themselves! First time ever! I was SO grateful.

Good luck with the rest of the splint time.
-francine