United Brachial Plexus Network, Inc.

Harper is having ACR surgery on 10/21. There were a few questions I forgot to ask Linda so I figured I'd ask here.
Will Harper have to spend the nite in the hospital or is it a same day surgery? How long does the procedure take?
What can we expect to see when the cast comes off? Will there be any loss of function at first or will we be able to see some results right away? How long can we expect to wear the brace after the cast comes off?
TIA!

~Lisa
Mom to Harper, LOBPI, 22 months.

Hi Lisa,
I have been wondering about about you and Harper and wanted to know how she was doing. Haven't seen Christina in some time, since Olivia aged out of EI last month. Did you get the issue of Outreach? Just last night I was reading the article on ACR by Dr. Kozin (if you don't have it, let me know, I'll drop it by). Isn't it funny how we forget to ask all these questions when we are in the moment? I hope someone can give you some of the answers you are looking for. Please keep us posted and let us know how she is doing. I will keep Harper in my prayers and wish for a painless and quick recovery with amazing results!! We see Dr. Kozin on Nov 21st, exactly a month after you'll be there...would be ironic if it were the same day. Tell Christina we said hello...Olivia still asks to play with her! Best of luck.
Felicia

Thank you for the good thoughts! I'll be sure to give Christina the message.
I did get my Outreach and was so excited to see that article. It made things even clearer and I am very hopeful about the outcome.

~Lisa

Lisa -

Our daughter, Allison, had the ACR with Kozin in May of 2007. To answer some of your questions:
- We did have to stay over one night with Ally. My husband stayed at a hotel and I stayed in the hospital with her. They will bring in a cot for you to put right up next to his crib.
- The procedure itself is really short. The casting is what takes the most amount of time, but still, the entire process will take about 30-45 minutes. At least that was the case with us and Ally received botox injections as well.
- As for cast removal, each person I have talked to about this has had different experiences. We expected nothing out of Ally, just a totally limp arm, when the cast come off. To our surprise, she immediately reached up and scratched her eye...something she had NEVER been even close to being able to do before. With her, her best day function-wise was that first day. Then she kind of regressed as the week went on (and her muscles tired) but towards the end of the week, she was on the up-side again. Since then, she's been awesome.
- Ally wore the brace I think for 3 months afterwards, just for sleeping. We were really strict about wearing the brace and were hesitant, when the time came, to let her sleep without it.

If you check out our website, www.twolittlemonkeys.org, you can read about a couple families who have been through the ACR with Kozin. (Go to the Monkey of the Month section). They both have some great information about the surgery, pre and post-op care, and great photos. And please feel free to contact them, or me directly if you have any other questions!

We will be thinking about you guys!

Andrea and Ally

Thank you so much Andrea! I'm glad to hear that Ally is doing so well

~Lisa

Lisa,
maybe we'll see you there. My son Kaiden is having the same procedure with Dr Kozin on the same day. We just got it scheduled today so now we are scrambling to get the travel arrangements set. He'll be 11 months, I guess he's the youngest one having surgery that day. We will be flying out there on the 20th. Good luck you your little one.
Meredith

Oh, wow! I'm sure we will see you there at some point We live in NY so we are driving up that morning.

~Lisa

Hi Lisa,

As Andrea had mentioned, our son Christopher also had the ACR surgery w/Kozin in May of '07. I think we were there overnight as well, could have been 2 days.

The whole process from when they take the kids to when they bring them back to recovery is about an hour or so. The kids will be very swollen after the surgery, so that's something to expect, so don't be shocked. It goes down after about 2 days or so.

The cast is worn for about 4-6 weeks, and then they make a brace which they are to wear for the first week or two, full time, and then to sleep.

Christopher figured out a way to wiggle out of it, so Kozin said it was ok for him not to sleep with it.

Once the cast came off, Christopher was able to raise his arm higher than he ever did, and has made great strides since, but in January, he'll be facing the muscle/tendon transfer since the ACR didn't work as well as Kozin had liked. (He told us this may happen before we did the ACR.)

If you'd like more info (and to plug Andrea's site), Christopher is the "Monkey of the Month" on www.twolittlemonkeys.org, and I'd be more than happy to chat with you.

Good luck and we'll be praying for you!

Adrienne