Therapy Thursday

Blondie has been making some big gains with her arm lately. She does a "push up" type exercise now that she is getting MUCH beter at repeating now. Check out the video below.

Then I've NEVER seen her do this before:

Finally, she wrapped it up with one handed scotter board - usually she has obstacles to knock over and can use two hands, but today she went across the floor with just the sleepy arm pulling her weight.



She was working hard today!

Is it worth it?

Last week I got an email from a lady in Florida whose neice lives in Cuba and had a left hemi for Rasmussen's. Thankfully, the doctors recognized the disease, and sent the family to Canada for their medical care, but they have had some issues with therapies back at their home, so they were looking for information as to what they could do at home to benefit the girl. This is unfortunately a common problem. Issues may differ, but I know that therapy has been one of our biggest problems. When we finally find someone that fits us, the hospital closes the outpatient program because of budget cuts (and the fact that they don't make much of a profit off of our kids because of medicaid reimbursements). This has happened to us twice, so then we have to change therapists, and we try to follow them, but the hospital most of them gravitate towards is impossible for us to get appointments in, is quite the distance from our house, and wasn't the same caring feeling that we got from our other two places. We were lucky.... one of our therapists started her own place which has worked out very well. She brought in our OT by working with another clinic, but the two clinics decided to split up, and we held our breath.... would we lose OT again? Thankfully the OT was able to keep a few patients on her schedule, and now travels to client homes to do therapy.

It has been an ongoing stress to keep Blondie in therapy. It may not sound like a lot of time to commit (4 hours a week). But our overall philosophy is not to let this disease/recovery define our daughter, or take away from the life of the rest of us. So we juggle picking up and dropping off kids at different activities, and lets be honest - sometimes the other girls have to make sacrifices because of the therapy schedule. But it has been worth it.

So the email from Florida started my reflecting on these last 4 years, and today I spoke to our OT. We had been asked by yet another family, if she would be willing to talk to their new OT about how she gets Blondie's body to respond the way it has. A valid question, and I have to admit, between the two requests for information this week I was sort of at a loss. I really should have been documenting this process better. I should have kept track of all the meds, and the surgery timeline, and the recovery steps we took, but I didn't. As a teacher I should have kept track of her entry into kindergarten, the difficulties she has faced learning to read (phonics vs. whole language) and get people to accept our "think she's normal" attitude, but I didn't. I felt bad for a few days actually because I felt like we sort of let down a community of people that I try to help, but then I remembered the extreme stress of the illness, and trying to juggle all my kids, and working, and activities and therapy, and I had to relax.

In my conversation with Tonya, she said she would be glad to speak in general terms about helping a hemi kid (HIPPA keeps her from speaking SPECIFICALLY about Blondie), but what she said made me feel better. She said that she honestly wasn't doing anything revolutionary, but it really probably came down to the fact that 4.5 years out we were still doing therapy -- honestly I didn't think we were at a point we could stop. She also said that since we strive for Blondie's independence and push her to do things by herself that we were tremendously helpful to her work. That really helped me put things in perspective. So on the days when my head is going to explode, and the gray hair is multiplying at a maddening rate, I'll have to remind myself that it has been the hardest thing Brian and I have ever done. There is not a lot of time for just the two of us, but someday my house will be quiet because ALL four of the girls will be on their own, and I guess then I'll remind myself that it was so worth it.

To Camilla's family -- see how Blondie is propped up on her elbows in the picture above? Our OT says that EVERYTHING you can do to have her lean on her arm and elbow is the best therapy ever. The kids don't like it (especially at first) but it wakes up those muscles, helps growth of the bones, etc. Blondie does it automatically now because we have played games in this position, read books, colored, etc. I forgot to mention that to you, but maybe it can help everyone.