United Brachial Plexus Network, Inc.

Well, today was the big day for us to begin removing Nicole's post-op (Capsulodesis) splint. My husband met me at the therapy pool. I removed the splint and Troy put a warm wet towel around Nicole's arm and shoulder while maintaining her arm in the splinted position. After a few minutes, I took the towel off, maintained her arm in position and walked her into the pool. When we were in the pool, I asked her if it was okay for me to let go of her arm and she said yeah, so I did so slowly. Nervously, I did. She did so well! She really amazes me everyday!! She mostly let the water just support her arm. Her therapist was there watching too. We didn't start pool therapy again, but I went at a time when I knew the Aqua PT would be near the end of her shift. That worked out very well and she took time out of her own schedule "off the clock" and stayed to see how Nicole was doing. Nicole mostly held her arm in neutral (thumb up). It was a little tough for her to get it into pronation (which is what she was stuck in before the surgery). She managed to get it there to hold onto the railing against the wall of the pool, but it took a little maneuvering. She was able to clap in a position that looked more natural than she ever has before (still no noise, but one step at a time). She was also able to touch her nose and her mouth with her left hand (something she'd only recently started doing before the surgery, but we didn't think she'd be able to it yet due to not moving her arm for 8 weeks). She LOVED being in the water again!! It was soo great to see her "pool smile" again! She has gotten a little taller and can walk on her tippy toes now in the water and was loving that too! I took her for a ride on the pool pony at her request and while we were riding she was bending and straightening her arm repeatedly and telling me that she was doing her exercises. I actually had to tell her that was enough b/c I know how sore you can get the next day after exercising the first day in a long time. I couldn't believe that I had to tell her not to do too much. She is so amazing to me and works so hard to get her arm moving! I never would've imagined that a 2 y.o. would be such a participant in therapy! When she does things like that, it really gives me affirmation that for HER we are doing the right thing by having the surgeries and doing all the therapy. I realize that isn't the right decision for everyone, but for Nicole it is. It's just a good feeling when as a parent you get any kind of signs of affirmation that the decisions you're making for your child are what they would want since we just have to use our judgment and hope it's best for our children. I had wondered if Nicole would lose some ability in shoulder flexion, but even after being splinted for 8 weeks, it does not look like she lost any range. In fact, her therapist noticed that it looked like she achieved the range without compensating as much.

Nicole enjoyed a nice long shower after the pool. I asked her if she wanted her splint back on and she said no. On the way home, I saw that glazed post-therapy look in her eyes again ( ( )and knew naptime was fast approaching. I was going to put the splint on before her nap but Nicole didn't want it on, so it's still off right now. I will put it on after her nap though b/c I don't want her to overdo it, esp. since she has Kindermusik tonight.

She didn't complain of any pain in her arm/shoulder. I gave her Advil shortly before we went to the pool and Tylenol before her nap, just to be on the safe side. She did complain of pain on her hand though and it looks like it's prob. due to awkward positioning in the splint. So, I told her I'd try a smaller splint on her hand (her hand/thumb splint). She's so smart b/c she said, "oh the blue one?" She'd remembered it from before. Anyway, that seemed to help her hand.

I think she's so happy to get that splint off that I might have trouble getting it back on her. It sure does feel good to be able to embrace her again without a big plastic thing between us! Well, we will see how tomorrow goes. I'll bring her to the pool again and will give her pain meds again. I'm thinking that tomorrow might be a bit tougher b/c she might have overdone it today. I didn't want to give her a bunch of restrictions though and really wanted to let her go at her own pace as much as possible. I think that's the only way she'll be able to learn her limits (IMO).

BTW, when we were home this afternoon before her nap, she was walking around with her arm down further than it had been just a couple hours prior. I think she was distracted and wasn't really thinking about her arm being down. It's not totally down by her side yet and I didn't ask her to bring it down there either, but it was definitely down lower than 90o.

Oh well, just wanted to share our good news, esp. for those who are planning to have the Caps done soon. The whole process went better than I expected (although I'm not too surprised b/c Nicole responded as she has in the past when faced with challenges as such). I hope the process is going well for Maia and others at this stage. I also hope that this post is encouragement to any who are not having a smooth transition process yet -- it will get better! I would also like to say thank you to all who have emailed and who had us in their thoughts today!! It's nice to have so much support and understanding!

-Tina )

Thanks for sharing.

I am so happy for all of you.

Kath

Congratulations!!! My daughter Bailey has been out of her splint for 2 weeks today. Your story sounds exactly like ours. We also took Bailey's splint off at the pool. She ended up keeping it off all day. She didn't want it back on. We took it off at about 1:00 and finally convenced her to put it back on at about 8:00 that night. She was ready the next morning to take it off again. I took it off and put her in the tub. She again kept it off all day.
The hardest thing for us was that she was so stiff. She didn't complain of pain though. She wouldn't let us range her. She didn't even want us to touch it for over a week and a half. This was so hard for me. I had to gain her trust. I started by just rubbing it gently and moving it just a tiny bit. I kept telling her if anything hurts tell mommy. 3 days ago she started letting us range her. She is so great about it. We put a video in and go very slow and she sits there like a little trooper.
Now it is hard to keep her from doing things she is not supposed to like summersaults, hanging on things climbing. She wants to try everything. Bailey is three so she understands quite a bit. A couple days ago I was talking to Lisa Thompson on the phone and Bailey got on the other phone and asked if she could do summersaults yet. She did not like the answer. She hung up the phone and told me "Lisa is not my nurse! My nurse is Dolly! Call her Mommy!" It was so cute Dolly was the nurse that took care of her in the Hospital and she thought she would get a better answer from her.
I hope Things keep going good for you guys and good luck with putting the brace back on at night. This is still a difficult for us. It doesn't hurt Bailey to put it on but she thinks she doesn't need it anymore.
Jodi

Yeah Nicole. So glad to hear it went well. Did you notice any weakness at all? The only place we saw was the wrist--go figure. Katie still has discomfort with hers but she hasn't let it stop her. I worry she is doing too much and you just can't get a 22 month old to understand that is not allowed yet. She can do something and she'll do it just to spite you.

She learned to crawl in the splinted position and is still doing without it. Looks akward. Her hand is in suppination as well and she doesn't have any rotation in the forearm at all. But she touches her forehead which was a never before the caps.

I agree Tina that we each make the best decision for our kids and should not judge ourselves or others against what someone else is or is not doing. And for those of getting ready for surgery, you gave it much thought, don't second guess yourself.

Again--YEAH NICOLE!!!

Yippppeeeee Nicole! I am so happy for you Tina! Thanks for sharing.
Rachel

Tina,
I'm glad things went well with Nicole, she is going to grow up to be an amazing woman like her mom ).
Cindy

tina - so happy that things went so well!!! What a wondrous day all of you had!! Keep up the great work Nicole - you go girl!!!

-francine

I don't really know about where specifically there is weakness at this point. I was so concerned about Nicole today and her overall well being that I was able to put away my therapist eyes and mostly just watch her expressions and make sure that she was okay. Nicole has had temporary wrist weakness after her other surgeries though, so I would'nt be surprised if it happened again.

The crawling thing was very hard for me when Nicole had the Mod Quad. You see, she never crawled as a means of transportation -- she scooted on her butt initially and then walked at 14 months. We finally achieved some crawling after 16 months and she was really having fun with it before the Mod Quad (at 23 months). So, it was hard for me to discourage her from crawling for the 2nd 6 wks post MQ (after all the work we'd put into getting there!). Actually, I didn't discourage her from crawling at first b/c Dr. Nath had told us that it was okay. However, after a day with lots of crawling and other weight bearing activities, her wrist got very swollen. So, at that point, I decided to make the call that she should not be bearing weight yet. I think it's just very unique to each child as to what to do.

This time around, I think our challenge might be somersaults (sp?). One of Nicole's friends likes to do them so Nicole likes to copy her friend. Perhaps I will work on not having Nicole's friend do them for a little while. That might be easier. Nicole was actually trying to do them with the splint on and I told her that we couldn't do that yet. LOL!

Jodi, thanks for the info. I actually don't even know how stiff Nicole is or how her passive range is. I managed to put the therapy-Mom part of me aside today and didn't even try to range Nicole. I'll keep in mind your experience though and see how it goes with Nicole. HAHA, had to laugh at your summersault story!! You can read about our story in my response to Christy! Too funny! Well, I was able to put the splint back on fine today. Of course, Nicole had some incentive. I told her that we had to put it on before we went to Kindermusik. Let's see, tomorrow night we have our congregation meeting, so I'll be able to tell her we have to put it back on before we go there. I guess that gives me until Wed. before I just have to say that this is just how it is. LOL! Nicole will also be 3 next month. I guess that might partly explain the similarities in the experiences. So, 6 more weeks and counting?! Take care. -Tina

Thank you all for your kind words! I know I shouldn't feel this way, but I kinda felt bad posting b/c our experience went so well and I know that a couple of you are having a lot of difficulties.

Anyway, I didn't even realize what happened today. I wrote in my original message that Nicole complained about pain on her hand. Well, at the time, I was so focused on Nicole having pain and me trying to help her alleviate that (just acting as a normal parent here), that the therapy-Mom side of me temporarily disappeared. It didn't even occur to me how great it is that Nicole's hand hurt. (you know what I mean) It actually hurt! She felt pain in her hand!!! She has never expressed any pain in her hand whatsoever! In fact, at a couple weeks post-op we saw an area where the splint hadn't been rubbing right on Nicole's palm and it was red and looked very irritated. However, she never said it hurt her. Granted, that was a different part of her hand, but I think there is new feeling there now!! I totally missed this and didn't even realize for several hours!! Duhh! So, we have something else to celebrate! Thanks again to you all! -Tina