United Brachial Plexus Network, Inc.

It's been almost two weeks now with us working with the splint on/off. It took us a while to convince her to go with more than 5 minutes off - then we stayed at 3 hours for a while.

Thursday was Maia's first day at school with her splint off. Figured it would be the best day because it's only 2 1/2 hours and there is no movement class that day. I stayed with Maia on Thursday because her teachers told me that they were scared and Maia was scared, too.

Maia didn't want to even go into her classroom. She was yelling at me to take her home, in the hallway. But the teacher coaxed her friends to come to the classroom door to see if they noticed anything different - and they did! - they immediately noticed that her arm was down. And they all pretty much cheered and jumped for joy. They asked her to see her arm and just made her feel so welcome - she walked right in and just to her task of playing immediately.

I didn't butt in with anything she did nor did I help her. She's used to being one-handed now and does well with it. So I stayed just for everyone's comfort level. She even played in the playground and went down the slide. I watched her teachers have very nervous sweaty foreheads... I stayed in the corner just as support. It worked out well.

Then we went to therapy for the first time without the splint on. That was a bit harder for me to watch because her arm can't move right now but a tiny bit here and there. In watching her therapist work with Maia we realized that the supination was a big compensatory move which involves legs and shoulder. But I am still amazed that her hand can even move in that direction - it wouldn't BUDGE past neutral before. So I still see this as a positive.

I asked Dr. Nath about Maia's weakness and he said it would just take several months for her and maybe more. Remember - all our kids are different right?

Maia finally "allowed" us to go to the pool today and I just let her do what she wanted to get reaquainted. She put on her floatie and just went to town - the 'old' happy Maia resurfaced! What a joy. She raced me - she water walks with her floaty. And she even tried to swim some strokes with her unaffected arm. She jumped in and had a mighty fine time - even played with some of their toys. The pool was hot- 93 degrees and the air, hot to match - what a great time we had.

The pool is attached to this rehab/fitness center - big window walls inbetween so Maia got to watch everyone exercising and she was amazed! She couldn't wait her turn to go in there and exercise like everyone else. So I picked up on this and talked with the exercise physiologists in there and we came up with a plan. Maia will be given her own chart and folder - which she will have to retrieve on her own like everyone else - she will wear her special workout t-shirt - and every day she will have to do her exercises. They will be listed on her chart with a little stick picture. (I am going to tell them what to put down and how to do it). She will also have to put an X in the box when she's completed it. And once a week or so she will get a new exercise or they will up the reps. We're talking about ROM's! She is SO excited about this. She already knows where the water fountain is and know where the sweat towels are. I hoping that this can be her big 'shift' to add exercise without it having to be play therapy all the time. I'll let you know how it works out.

So today she got her first exercise - it was 'reaching up' and she had to do it one time. She couldn't do it but she lifted her arm with her other hand so she got to 'X' the box.

And she is finally sleeping much better. She's going to sleep easier and she does wake up still but she's not screaming and she comes right into bed with us and falls back asleep. What a good shift this is for us - we were really getting ragged! I slept all last weekend to try and make up the time....might do it again this weekend!

For other moms with kids who are post caps.... does their shoulder droop (worse than it did before)? Maia has no shoulder it seems...even her shirts are falling off. I hope this is a temporary/weakness issues. (I'm sure it is, it's just hard to see for now)

have a nice weekend,
francine

Glad to hear you all are getting more sleep. I know how it feels to be ragged and have a kid that is ragged too!!! I hope Maia continues to get more sleep as I think more sleep helps everything!! Just curious, Are you doing e-stim to help build her muscles back up? By the way, great idea about the "workout". Kids want to be just like grown ups! Won't be long and she will want her drivers license! So watch out!

Yeah Maia. Yep, katie's shoulder is much droopier but it is picking up some. And she is moving the arm much better and looser now. In fact, it seems as though the shoulder joint itself is now moving a bit whereas before she moved her arm as one piece with her back.

Sleep sounds soooooo good right now. Four hours most nights is it and then it is broken up. We have no idea other than she is in pain and goes through the no sleep zone after every surgery. Just about the time she starts doing better it is time for the next one.

Have a good weekend

Glad to hear things are going good for Maia. That is great the you can go to the pool every day. We live an hour from a pool and that one is only used for therapy(it is at a hospital). Bailey also has a check off list that is on a whiteboard. This has been working great. We also do this at night before she goes to bed. I think it makes her feel grown up.
Bailey's shoulder is droopy too. I was wondering if this would get better also. Bailey's therapist thinks it will she reminded me that it was after the quad too. I was wondering if it was from being weak (lack of use)??
I'm glad the sleeping is going better. Our house is a little crazy too. If Bailey is not awake then it is our 5 month old. Wmy husband and I take turns but every weekend end up being ouur catch up time.
Keep updating us it is great to hear about others experiences.
Jodi

I'm so glad to hear that Maia's first day back at school went so well. It's also wonderful to hear about her joy in the pool. I know that joy firsthand with Nicole too. That's why I asked you before if Maia had gotten into the pool yet b/c I feel that makes all the difference in the world with Nicole. I was so happy to see Nicole in the pool again with what I termed her "pool smile."

Sounds like Maia's growing up too with her new exercise routine. It's funny b/c you can lay out all these toys, but what Nicole really likes is to "roll the dough" with the pool weights. She also enjoys sitting on this metal chair that's hooked onto the pool wall and that the adults sit on.

I think Nicole's shoulder is drooping worse than it did before too. Yes, I too am hoping that all her decreases in strength are just temporary.

Aaaahhh, sleep is good, isn't it?!

Thanks for the update.

-Tina )