Wednesday, November 3, 2010

Nina Update: Ten Months Home

It is amazing to think that Nina has been with us for 10 months already as we are still learning so much about her.
At this time, a year ago, we had a travel date and were only days away from meeting Nina.

A week ago, I took Nina to a Cerebral palsy clinic at Mayo. The day was very long, however, I learned much about Nina and how Cerebral Palsy affects her.

Physical Therapy: The physical therapist was incredible. She listened to me, my concerns, my observations, and was encouraging. I get so frustrated with Cerebral Palsy, I get so frustrated with Nina's mobility that it was nice to have someone listen to me and explain things clearly.

The therapist watched me stretch Nina and showed me new ways to stretch her. She stretched Nina to get a feel for her and see how "tight" she is. Once we got her in a walker, the therapist noticed right away that her hamstrings are in pretty bad shape (meaning, the tightness is raging against her). The gait trainer (pink walker) that we have is so big and heavy that realistically we have used it very little. Nina needs a walker that will work with our family and with her, so we found what works well for Nina, and since it is Mayo, they had it in their pharmacy, and we got to bring it home!

This is what we now know: it will take a long time for Nina to walk independently. She is not just going to "get it" one day, get up and walk. Nina has 3 1/2 years to work against and her tightness is unusually high. However, the progress she has made since she has been home with us is incredible. This means that she will be able to walk independently some day, but we will have a few years of hard work and intervention to make this possible.

While this might sound discouraging to some, this was so good for me to hear. My experience with Nichole is what drives me when working with Nina. Not only do I get frustrated, I end up expecting too much from her, things that she physically is really not able to do.

Our goal: You can see in the picture above, where Nina is not wearing her braces, that her heels are still as "high" as they were before we got her, even after the botox. The difference is that now we can keep her braces on, and our next goal is that Nina's heels will touch the floor when she is wearing her braces.

Orthopedic Surgeons: These guys do some crazy measurements! They checked Nina's tightness closely and examined her legs in different positions (legs bent, legs stretched, how much would they give in, how much would they tighten, etc)

This is what we now know: For a child with Nina's type of Cerebral Palsy, Nina would fall into a more "involved" case. How he explained it to me, was that for children in similar conditions as Nina, she is "worse" than them. She has some bone malformations due to...spending her life in a crib? Never being stretched? Wong posture that was never corrected? lack of stimulation? It could be so many things! Right now, this is not causing any problems, but it is possible that this might need to be corrected if at some point this interferes with her independent mobility.

Because of Nina's "worse" condition she will need surgery. They do not like to do surgery with children until they are older, so they do not have to redo it as the child grows. This surgery is sometimes called "traditional Lengthening."

I brought up PERCS, a different type of surgery. It is a possibility for Nina, but this particular doctor prefers not to do this surgery in children with Nina's condition. However, I know of many people who were very pleased with the results.

We then discussed Nina having a rhyzotomy. This is a neurosurgical procedure which goes into the spinal cord and severs the nerves that cause problems. Nina is a strong candidate for this surgery, as it is mainly her legs that are affected by Cerebral Palsy. Although her arms and hands are affected as well, she has full use of them. In six months, Nina will have a "gait analysis" done where the orthopedic surgeons, as well as the neurosurgical team will be present and discuss what is the best option for Nina. We are waiting six months to give Nina more time to stretch out on her own and see how much more progress she has made.

Occupational Therapist: Incredible therapist! She was teaching me how to do therapy with Nina (and Nichole when I asked!) She was just so good! She knew exactly what to do with Nina and wow! Looks like Nina has some visual perceptual processing issues, and that will be a separate post because this is getting long!

Botox: Nina got botox on her hamstrings, and we can see a little difference in her walk. Her legs are not fully extended, but her steps are better, and her heels almost touch the ground with her braces on.

This is it in a nutshell. Internet is back (thank you stud of a husband!) and November is Adoption Awareness Month. So you will hear much about Nina, orphans, and what you can do to make a difference!


  1. I have so much I want to talk to you about! Not really advice, just stuff to bounce off of you. CP is so complex isn't it?
    Nina looks great, so cute!

  2. Your Nina sounds so much like my Ben. It sounds like she has Spastic Diplegia too...tight muscles...mostly legs are affected. Ben too has very tight hamstrings and calves. He got botox in his hamstrings in August and that has now worn off...he's also done serial casting to stretch his calf muscles. He too has a hard time getting his heels down when walking (in his walker).

    We are waiting for a ocnsultation with an orthopedic surgeon...I'm not sure what will come of that. I enjoy following your family and even though I love all your posts, I especially love the ones about Nina since she's just so similar to Ben.

    She's an amazing girl!

  3. I LOVE Nina's glasses. She looks so cute. Such a big girl! Thanks for the update. Wow, lots to think and pray about.

  4. ayisha7:21 AM

    hi im living in malta my son has the same CP Spastic Diplegia he is 3 and half now he does botox every six months he also uses his walker at school wait for his new afo's that close at front as he is still on heels in malta i have never met anyone with this good to talk to someone who understands i hope Nina will be fine god bless

  5. Ayisha, I am so glad I can be an encouragement to you! Please do not hesitate to ask any questions. Also, check out the label CP Connection because it will take you to other families that ave kids with Cerebral palsy.:)


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