New from Central PA

[claire'smom]

Hi! I'm Amy...I gave birth to Claire on Sept 9, 2008. She has a left obstetrical birth palsy. Her arm was completely paralyzed at birth. Then, over the next 2 weeks, she regained finger and wrist movement. We began taking her to Shriner's in Philly...luckily we're only 2 hours away!

A few weeks ago, she began to have some new movements...first, she began shrugging her left shoulder, then she began moving her arm to sit atop her tummy or chest. We had our next appt. with Dr Kozin and he said she was off the micro-surgey list because of these movements, and he seemed very excited. But then, her improvements seemed to stall. She still holds her hand in the waiter's tip position, and almost always just holds her arm with elbow bent sitting on her tummy or chest. If I put her arm down or up and let go, it snaps back almost like a rubber band to that same position.

I am VERY discouraged. My husband and I do ROM excercises daily, and an OT comes to the house weekly. Is there anything else I should be doing?? Please help with your advice. Up until a couple days ago, I was very optimistic. I guess the fact that she turned 4 months and still has not recovered has sent me in a down cycle with my emotions(since most info says if they don't recover by 3 months, then the road ahead is long). My friends and family try to be helpful, but they don't understand.

It did help to read what Evan J said about being 18 and playing sports and learning guitar...I was just worrying this evening about what her limits will be, so thank you Evan J. It also helped reading what claudia had to say on another post...Claire is my 4th child also.(my other kids are 2yr, 3 1/2 yrs and 5 1/2 yrs old) I worry that because of my other kids, I don't spend enough time with her exclusively.

I know this was a long post, but it felt cathartic to get it all out, so thank you to anyone who read all the way through!!

[jill's mom]

Hi,

I'm so sorry your daughter was injured. My daughter didn't recover either in the 3 mo time frame so I was heartbroken beside the emotions I had just dealing with the injury being so unnecessary. But I wanted to share with you she has made a great recovery nonetheless. No surgery so far.

I know everyone has different recoveries but don't feel like she still won't have a great recovery and if she doesn't you will help her thru it. Seek multiple opinions and a good therapist who is experienced in treating bpi patients. There is a therapist Cindy Servello who is 11/2 hours form Philly who you could consult with as well. You said she could bend her arm which is good. Take lots of pictures so you can see her progress esp when it is slow sometimes. For us it seems to go in spurts. Months of little progress and then several things happen at once. She is still so young. Kozin's office could give you Cindy's info or e-mail me if you would like. Might be worth a trip even for a consult at some point in her recovery. Keep your head up. You are quite a busy mom with all those little ones. She will grow up with a lot of love. But don't lose hope for a good recovery.

Jeannette

[F-Litz]

I always said that Maia's recovery was like a roller coaster.... 2 steps forward, 2 steps backwards, 5 steps forward, 8 steps backward, 3 steps forward, 1 step backwards....

you may see a stall if she's having a major growth spurt

you may also see a stall if she's having (undetected) problems with her breathing - is her diaphragm involved?

My daughter, Maia is 10 now ... when she was a wee one she would have these stalls. I thought they were growth spurts and maybe many of them were... but I found out when she was around 4 that she wasn't getting enough oxygen - her left side of her diaphragm was very weak and she just didn't get enough in to move her arm. Actually, now I use this as a diagnostic tool to tell me when she's getting sick. When her arm stops moving, I know for sure that she's brewing something.

There are other reasons she might be stalling. So the best thing you can do right now I think would be to contact Dr. Kozin and ask him about what you are seeing. Get a short video and email it to him and see what he thinks.

Maia has a severe bpi and she's also very successful in her life - she a musician (plays four instruments) and loves tap & jazz dance, aikido (martial arts - 3rd belt not) and sings in a choir. I worked hard at steering her away from being victimized by this. Made her aware that every single person on earth is different from one another - so in actuality she's no different than anyone else. She does most things one-armed and she's extremely independent. Whatever she can't do, we figure out a way together and then she's fine.

It's a hard journey but a rich journey. I learned and experienced so much - I've changed at the core level.

Don't worry - your sweety will be ok.

-francine (also in PA)

http://www.injurednewborn.com/maia8
http://www.youtube.com/franlitz videos of maia

[claire'smom]

Thank you to both Jeanette and Francine for your input and the time you took to reply to my post. It is so nice to have somewhere to come for support.

I appreciate the name of the OT. I also have a list of questions now to ask when I call Dr Kozin tomorrow.

Francine-I checked out your website...it is really great. Maia is very inspiring! Also, I think increasing awareness will ease some of my emotional pain. I'll do what I can.

Thanks again ladies!!!

[claudia]

Claire's mom:
I need to give you a news flash....the recovery is not ALL in our hands.

You do what you can. And let go of the rest. Don't freak over the number of times you do rom (a mom once told me that she stopped her car on the side of the road to do rom because she was told to do it at every diaper change and she briskly changed her son's diaper before they got in the car...).

PLAY with Claire. Have your older children play with her, touch her, pick her up... Treat her like any other child of yours. Include her like you would have if she hadn't been injured.

Juliana was speech delayed (oh, that is NOT a problem now!). She said two things: ugh! (if something was hard to do) and voom! (the sound a car makes-vroom-taught to her by playing with her older brother).

You are sooooo lucky, as was I, to have other children to help out. Juliana has been racing to catch up with them since day one. It has served her well.

I can't say this enough to the new moms: take time out for yourself. Away from the kids, not doing things for the kids...doing something YOU like. Maybe you always wanted to take a pottery class. This is the time to embark on it. The way this injury occurs, the feelings of loss, the feelings of loss of confidence, loss of power can all come together and cause terrible sadness. If you step back and focus on you, then you can diminish those feelings.

It is frustrating. This is a complicated and frustating disability. And I definately saw Juliana go forward and back. And I can clearly remember times when I just thought there was no possible way I was doing enough to get her through. And then she'd surprize me. I had her in a summer program at our JCC one year. The last activity was swimming, so the parents could help dress their kids, they were all 3ish. Though Juliana could swim better than the other kids (aquatherapy), she could not dress herself at all. Some of the kids were completely dressing themselves, some with help...but there I was doing all the work for Julie. I looked at a friend whose daughter was also in the class and said "she will never learn to do this..." She said to me:"she is the youngest kid in the class, give her a break. She'll do this in 6 months." Guess what! Six months later she was learning to get dressed one-handed.

These kids are smart, and excellent problem solvers. Yes, you need to be their advocate. But sometimes, things just are what they are.

Oh, and don't forget to go out on dates with your partner. And no talking about kids or jobs!!! That was a rule my husband and I had. We used to go to a lot of baseball games...so we could talk about the game instead of me talking about the kids and him talking about work!

claudia


Message was edited by: claudia

[F-Litz]

ohmygod Claudia.... I love that someone has FINALLY said it outloud:

THE RECOVERY IS NOT ALL IN OUR HANDS

nor is it in the hands of the doctors, therapists or anyone else..... sometimes it just is what it is

Lou and I have just recently made our way back to a strong and happy personal relationship after 10 1/2 years of devastation. I'm so glad we found our way back to each other and remiss that we couldn't achieve this earlier - but won't look back either. No regrets.

-francine

[Kimberly1108]

Hi Amy!
Welcome to the board! My son was born in Nov 2007 with a similar situation and regained slight movement around the same time as your daughter. He is under the care of Dr. Kozin and a wonderful OT and PT, and we try to do the ROM as much as possible. I have learned a lot through this process ~an answer of what the future holds for our children is not clear, but as i am sure you see with your other three little ones, it never is- we just seem to be able to develop more questions for them as we are aware of some of their rather unique challenges. I can tell you that my son is bright, loveable and not defined by his injury. To give you some encouragement, we found that when my son began to "creep"/crawl, it built and stretched his muscles the most and it was a great way for him to actively particpate in the therapy. Your daughter will begin to move soon, and this will likely be the best therapy there is! And as a teacher, I can tell you that children usually develop in leaps and bounds in one area at a time (including cogntive, physical, or emotional)~ in the event you are seeing a "stall" physically, she may be developing cognitively or more socially at the moment. Take a deep breath and enjoy her!!! She is always growing and changing- we just can't always see it so obviously! Best wishes always! Good luck! (And be sure to get some sleep!!! I tend to research this late at night as well- be sure it helps and doesn't overwhelm- this forum is fantastic for that!! ~very supportitive and encouraging!)

[claire'smom]

Kimberly,
Thank you so much for the encouraging words. I took a break from the message boards for about a week, and I think it was good for me! We are starting once weekly therapy with a PT next week (we already do weekly OT). I am just going to do what I can and enjoy her like you wrote to do!
Thanks again.

[veggiebug]

I see you are from Central PA, let me introduce myself. I'm a ROBPI from birth, I'm 30 and also from Central PA. Actually I live in Williamsport to be exact.

If there's anything I can do, or support I can lend please let me know.

-Traci

[claire'smom]

Thank you so much Traci! Nice to "meet" you!

Also, thank you to Claudia for your post--I'm trying to do all that I can without obsessing!