United Brachial Plexus Network, Inc.

Hello again, It has been awhile from the last time I posted and there have been losts of great changes with this message board!! I am excited about that!! But the reason I am here again tonight is to come, remind myself of all you wonderful parents!!

My daughter Kelsey is now 9 as of Thanksgiving day!! she is now 10 MONTHS Post her first Mod Quad surgery (long story on why she wasn't seen before then) and she is doing WoNdErFuL... She is not completely fixed but she has soooo much more use of her arm!!
before her surgery in March of 2000 she couldn't even put her hair in a pony alone, she couldn't get it up past her chest in the airplane move--two arms extended out to her side, she couldn't put it behind her back, or up on her head... and so much more to mention but you all know them all...

well she is like I said 10 months post and I am happy to say she is putting her own hair up now she can put her hand on her head!! she still has trouble with it going on behind her head (walk's it down with her fingers ~g~) and puts the arm behind her back with little help from moving her body in to do so!! she can do the airplane move now and she can put the arm up HIGH!! Tomorrow she wants to try to do a summer sault!!!!! I am so excited for her! she still has troubles but hey, she may get to play basketball like she wanted to... She is still in therapy 2 times a week.. this is because I am determined not to give up on her and she has a wonderful therapist that is willing to give it his all! We go back to Houston in July of this year to see about another surgery for her elbow.. It is still locked and wont fully extend.. but I have noticed that the arm looks as if it is growing and I hope it catches up with the other arm.. AND THE MUSCLES!! No boy in her class will arm wrestle her!! but that she isn't too proud of she still refuses to wear any shirt that shows her muscles!!

Some of you that talked to me back in February and March while I was trying to decide if we wanted to do this surgery I wanted to tell you THANK YOU!!
Thank you for all your wonderful advise and for those of you that had the older children that had gone through this at a stage like Kelsey that had never had the medical attention that they needed utill they were older. It sure did help me alot on my decision to go ahead with the surgery.. I didn't second guess the surgery because I didn't believe that it wouldn't help.. I just didn't know what chances Kelsey's outcome would be for a older child!
But I can say we have no regrets!!


Well I am a mother of 4 girls ages 11, 9, 6, and 2!!!! and feel that I have to have a duty in helping parents be aware of this birth injury that could very well happen to anyone's child including them!! We have bought the shirt's for awareness and I have a told anyone that askes about Kelsey... most think she has broken the arm and it didn't heal right!! ~g~ That doen't bother me.. I have always talked to even a stranger so maybe they would be aware!! the weird thing is that we live in a area where we are Northwest Oklahoma.. and where Kelsey takes her therapy and all the evaluations she has had there just are no children from around here Like Kelsey's injury... now that to me is strange because of the percent of babies that are injured during birth.. but anyways I have been thinking alot on what my purpose was to help aware mothers... and I have came up with a plan that is helping me feel like I can help.. I have just started this within the last couple of months... I sell items over the internet and when I sell to anyone or buy either way.. I always include a note about this birth injury to the e-mail that I send to a stranger I only know because of a business deal... and the responds have been great!! I have lost's of young mothers, lots of grandma's and friends of someone going to have a baby soon, email me for more information... and I always give them this web site link and all the wonderful others that I have... Including your's Francine!! Just in hopes that I can help one parent be better educated and maybe by reaching one mom and saving one baby gives me enough power to go on... I know it doesn't sound like much, but at this point is all I can do..


Well I also have some questions for you.. I have been reading about the winging!! Well Kelsey has a really big wing.. and her therapist is working on a exercise and this may work for the older children but not for the younger unless you can get them to lie still on their backs.. He has Kelsey lie on her back and put her arm's up in the air above her body as reaching for the ceiling.. then she is to lift her shoulders up off the mat like she is reaching for something...but leave her head and rest of her body down.. so her arm's and shoulders go up but the rest is to stay put..and do this in set's of 10's\\ 3 times a day... now we just started doing this exercise because the winging does seem to be worse now after her surgery than before.. but I see where some of you said it should be and some that are trying to tape it? Dr.Nath never said one way or another for us.. I maybe should ask.. but anyways for you with younger children and babies maybe you could just help your child do this exercise.. by putting your arms under their shoulders and help them lift.. or talk to your therapist and Dr. Nath first. but I have read it in our therapist books and he has shown me where this is one exercise they do for shoulder blade therapy..


Also I would like to ask.. what is capsulodesis? I'm just not sure and would like to know..

Well again Thank you and If anyone is looking for a mother that has a older child that has gone through the Mod Quad at a older age ~ Keep me in mind... I sure will talk their ear off!! ~g~
Good luck everone. I know it is hard.. And I believe that God gives us the strength to do what needs to be done..
Take care~ and God Bless~ Denise McNaught.

Hi denise

Thanks for doing such a good job on awareness! I am glad that you are happy with the results of the mod. Amazing huh?

Katie just had the caps in November. The joint being worked on is opened up, the capsule tissue is pulled tight, stiched (sometimes they use an "anchor" and then closed back up. When the muscles don't develop quickly enough or strong enough they pull on the joint, sometimes dislocating and sometimes just sublaxing. When Katie would do ROM the head of her humerous was slipping out of joint in the back. This caused her ROM to become less and less, her shoulder kept sloping and drooping and she had increased pain in addition to not developing other muscles because she wasn't moving properly to exercise them they way they needed to be. The caps doesn't always work, especially if the child doesn't get the muscle recovery and the joint continues to dislocate. They can either redo the caps (from my understanding, someone correct me if I am wrong) or do an osteotomy, placing the arm back in a more functional position.

Hope I helped. The wicked is tired and screaming. Write more soon.

christy

Denise- I'm so excited to read your update and even more excited to hear about your awareness work! You are going to reach a lot of people that way.

I have an idea.... when you send your message out can you ask them to share it with just one other person? Doubles the volume instantly!

I'm so glad your daughter has good results from the mod quad. She must be elated! Do you want to send me a picture for the site showing her new movement capabilities?

Maia just had the capsulodesis and Christy explained it perfectly.... it's just hard waiting for the end of the splint and start of the rehab therapy. I think we're going to be doing most of it in the water.

You take care and you and your daughter BOTH keep on doing all this good work!!

-francine