Monday, August 10, 2009

Danielle's CP evaluation

Today Danielle went to the CP (Cerebral Palsy) clinic at Children's Hospital. I have mixed feelings on the visit. :)

Overall, it went well. Danielle has a tentative diagnosis of mild diplegia, but it's only a tentative diagnosis due to the amount of progress she has made in the last 3 months. Since coming home, she has learned to run and jump--not normal progress for children with CP without any therapy. She has used no orthotics and has been able to learn how to walk with her heels almost completely down (she was walking completely up on her toes when she came home).


They staff at the CP clinic wants to give her botox injections in her calves to help release those muscles so she will not need to work so hard to keep her heels down. They anticipate this being a one-time procedure and they don't see a need for orthotics unless she starts pronating after the botox (a common side-effect because the "looser" muscles cannot provide as much stability).

They also recommended PT, OT, and speech therapy--none of which we will be doing. The PT was a max of 1-2 times per MONTH. OT was "just in case" she might have some fine motor skill difficulties. Since coming home, she has learned how to pick things up with a pincer (2-finger) grasp and how to use scissors to cut on a line. We feel that her fine motor skills are developing very well for the amount of time she has been home given her history.

I actually laughed and said no when they recommended speech therapy. We've been through the language learning process twice now and Danielle is far and above where the boys were at the same time home (for obvious reasons with Dima). She can clearly say "rectangle", "watermelon", and a score of other words that continue to surprise me. :) She can pronounce all of her English sounds correctly, including "th" which is not present in the Russian/Ukrainian language. Yes, she has a vocabulary deficit...but she's only been hearing and learning English for 3 months! LOL

I think some of my frustration with the visit is that I don't feel they were taking her history and background into consideration. When I described the visit to Mark, he actually asked me if they realized that she was adopted. Yes, they mentioned a couple of times about her only being home a few months, so I think they get it...but they obviously don't get where and what she was coming from.

We are planning to go ahead and schedule the botox. The botox injections normally last for about 3 months, and we are hopeful that that will give her muscles the time they need to learn to relax and help break her of the habit of walking on her toes.


Anonymous said...

We faced many of the same issues when we came home with Nathan. We kept telling them over and over that he was adopted and that he sat in a walker for two years with no stimulation, etc. It was very frustrating!

We finally found a neurologist that got it. He took a very wait and see approach and it has worked out great.

Nathan's CP is more advanced than Danielle's, but like hers it is only evident in the lower extremities. He does get Botox injections every three months and they have worked great for him. It really helped him to get off his toes. He also wears braces and will for a little while longer.

So glad to hear her speech is coming along so well!

Keep advocating what you know is right for your kids! We talked about this in an adoption meeting last night, it seems the professionals are so stuck on what is "normal" for adopted children that they don't always take the background and the situations they came from into account. We know personally the situation that your girls came from, and my husband and I are amazed each time we read your blog and see pictures. They are doing so great!

MamaPoRuski said...

It is so difficult for our health care system and schools to understand our child's backgrounds as their theories only apply to our culture! We do botox for Z every three months and after a year and a half it is not as effective (he keeps getting growth spurts that set us back). We are amazed at his progress when we focus on muscles his body was never taught to use!
Praying for you and yours today! God Bless!

MoserUpdates said...

We are smack dab in the middle of this, too :) Eli has a mild CP diagnoses, which is also tentative. We enrolled Eli in OT, but after only two months he's pretty much caught up and surpassed kids his age. And his PT is mostly stretches with botox and braces coming. Dave and I decided we're going to wait until next year to consider Speech because he's come a long way on his own and will be around lots of kids this fall. I expect him to be able to recite the alphabet soon, too. He can already point out R and V in words and can repeat the letters (except W). Keep me posted! I'll be excited to hear any progress :)

Tami said...

How frustrating! Sometimes I think they're so used to just looking at the deficits and throwing out recommendations without really considering the child. Obviously she's made HUGE strides in the last few months. Keep up the great work! :)

mck said...

That's a handful! I'm in school for speech pathology and we just went over the ethical issues in treating kids whose first language is not English. Speech pathologists aren't ethically allowed to bill insurance for a child who doesn't have a documented speech or language disorder (and diagnosing that in a child who doesn't speak English well is very hard!) Learning a new language is not a speech or language disorder. And actually, dialectical speech is not a qualifier of a speech disorder either. Anyway, it sounds like you are right on! :)