United Brachial Plexus Network, Inc.

Tuckersmommy- Is he still in the brace then? JC had the muscle/tendon surgery at 19 mos. old and what I loved about it is that we saw some results right after we took off the brace for the first time! It still took a few years of strengthening/retraining (via a few rounds of modified constraint therapy as well) to get him where he's at today, but seeing some improvement right away was so encouraging. We started Aquatic Therapy when we were able to resume therapies after the m/t surgery and I think that has helped him a lot too.

Katie-As far as ROM breakdown:

Overhead, he is great. The m/t surgery made a WORLD of difference. I think they had said around 90%. It took a few years of strengthening to get him there, but we are very pleased with overhead movement.

He can get a bit past neutral for external rotation when they isolate his correct muscle. When he compensates with his other muscles he can get further out. Before the m/t surgery he couldn't even compensate to get his arm out there, so I am pretty pleased with that outcome as well.

He is around neutral for wrist extension. He wears a nightime splint to keep it from going into waiter's tip (something he's prone to do still when resting).

He's at neutral for supination, but it's functional. He used to wear supination straps till he turned 3 and then he was able to get it to neutral.

He still doesn't do the snow-angel movement and he can not get his arm behind his back or at his back at all. It makes pants difficult, but I keep him in elastic waist ones and so he just uses his uninjured arm to pull up and down his undies and pants. We don't even own jeans because it's too frustrating for him.

JC adapts really well and figures out ways to manage most of the time. Our Kiddos are so smart! He is in gymnastics and the instructor makes all the difference. He pushes JC and makes him try everything and makes sure he tries a few times with both arms (smart kiddos will do things one-handed if they realize it's easier... JC can be bad about this) before reverting to his uninjured arm. He also made the class activities involve big arm and shoulder movement. I believe this has helped JC a lot with strengthening.
He also does OT and AT and sees the pediatric chiropractor. He usually has a great attitude about working hard. Every now and then he'll get discouraged, but I remind him that he is just like Nemo (from Finding Nemo... our family's fav. movie) and that he is so special and sometimes has to work harder at things and not give up. They both have Lucky Fins! Our motto is "Never say 'I can't', Say 'I will try' ".
At home we have a playground with a rock wall, ramp, rope ladder, etc. that we have him play on daily. To help him get stronger and use both arms together. We also k-tape him at home. Taking a break from ESTIM for now.

To go from only raising his arm an inch off the ground and moving 3 fingers slightly as an infant to where he is now, is humbling to think about. He works so hard, but the benefits of that are amazing. It makes me thankful that we've pushed him and not let him give up when he gets mad. Somedays I get a bit sad for him, but try to not let that show. We all have hardships that we must deal with in life and I just hope this is his one. We were given the interesting/hard/special/blessed task with figuring out how to give these BP kiddos the tools to deal with it from such an early age. It can be overwhelming, so take pictures of everything going on starting from an early age, so your kiddo can look back on this time and know you worked like a dog for them!!! haha.

(((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))) to all of you Moms. Hang in there and keep us updated please. I LOVE to read Updates on our children!
"gramma" Carolyn J
LOBPI/74

Thats good to hear how much hes improved! Maddie has had full use of her fingers and hand since birth, and now her wrist. She is just started the snow angel movement when she started lifting her arm up. She is able to extend her elbow, just not flex yet. We are working on getting an emg scheduled and that makes me nervous because they are sedating her and i wont be able to feed her for 4 hours before, so hopefully that goes well. She just turned 2 months a few days ago, so we are praying she still fully recovers without surgery. Your son sounds like such a tough little guy

Did they say why they are sedating her? And secondly, if they insist on sedating baby girl, really be insistant about having it scheduled first thing in the morning... the office is less likely to be behind in appts. so early and so that way baby girl will have less time without milk. I know many places (and with JC as well... he was around 2-1/2 mos. old for the emg), will give the babies a medicine that makes them sleepy/groggy via syringe. JC was half asleep for about half the emg and then with the second half he was groggy... he did not appreciate the second half (when they started putting the needles closer to his shoulder area) and let that be known, but when it all was done he quit crying quickly.

The doctor who did JC's emg was very nice and he did one prick on me so I knew what it felt like for JC. That made me feel better because I knew that JC had even less sensation in a lot of areas than I did. They started on the lower and worked their way upto his shoulder and a few pokes on his back. I was able to hold him the whole time. It wasn't a long procedure. JC did seem a little irritable the rest of the day so I gave him infant tylenol afterward, but I'm not telling you to do that. It just helped him. That and a nice, long, warm bath seemed to make him less achy.
It wasn't as bad as I had thought it was going to be, but I was still so relieved when it was all done and we were home.
The team read the results soon after and when they did the nerve surgery, they discovered he had a bit more damage than the emg read so it's not 100% accurate. I think it's more a measuring tool.

haha and thanks for JC's compliment! He is pretty tough... he frequently tells me "I'm a man. I'm so strong!!!" It makes me laugh and think he doesn't even know how strong he really is! He does not remember his surgeries and recoveries and even a lot of the hard work he has put in. It's nice that when they start remembering more, they are older and therapy can turn to being fun because they can understand direction and games. Now he looks forward to therapy and riding "his" hand-pedaled bike, playing Lefty air hockey, and playing "games" with his therapist. So hang in there!

I will also be praying for baby girl to recover more bicep movement and will avoid this surgery. How is she doing with the ROM exercises you are doing?

They told me because it is painful for babies, but Maddies doctor in Mil said it would be uncomfortable and not very painful. In milwaukee they wouldnt sedate her, but here they do. They did say it would be really early in the morning so thats good. I havent decided yet if we should just do it in milwaukee and avoid the sedation...more decisions lol. Thats awesome he likes his games! She does very good with them. She loves tummy time too. Sometimes i get so mad, because i think, i shouldnt have to be doing this...why did this happen to her...i shouldnt be looking for arm movement i should be waiting for roll overs and such. I try not to think like that too much though lol it can suck. But the fact that she is here is the most important thing! Do you have a facebook page? It might be easier talking on there than here

Personally, I would avoid the sedation thus avoid that list of risks and go with the other hospital for the EMG testing. That is just me though. It was uncomfortable for JC, but not wish-he-was-sedated-painful (just my opinion...). -Sending you a message.

I was thinking that too! From talking to the lady here, its like they electrocute them! Im glad too hear its not horrible. I havent gotten a message yet

Thank you for the updates.
"gramma" Carolyn J
LOBPI/74

I'm totally new to this site, so I don't know all the "lingo," but I'm assuming EMG is the electronic nerve mapping they do. I've had it done 4 times. Once as a baby, once at 4, once at 14 and the again at 24.

For what it's worth, it is rather painful in some places where the nerves are still functioning. Maybe they had the stimulation cracked up higher for me since I have limited sensation and extensive nerve damage throughout, but I found it tough.

Were I to have a child have to go through it, I would sedate. I believe our cells have memories, and I believe the less pain you ultimatly have to endure, the better.

Just my opinion.

He gets his cast tomorrow yay yay yay...I pray he improves..thanks for the encouragement,I love hearing all the positive updates and therapy that every one uses.All the help ...helps