Shriners

I had such high hopes for Shriners. Apparently too high because our day there went nothing like I expected. I would have to write a book to tell you everything that happened so I'll hit the highlights. We saw a PT and an OT. The OT was a waste of time, but whatever. The PT really listened to me, watched Oksana walk, and agreed that she needed some sort of assistive device to help her mobility in the community and at school. They pulled out forearm crutches and Oksana just carried them around. I have to admit, I didn't see that one coming. The PT then mumbled something about me finding a PT to teach her to use them and left. Then we saw a nurse practitioner. She asked me a bunch of questions and watched Oksana walk. Not sure why we saw her when the doctor was coming in right after her and asked me all the same questions. The nurse had a large mouth and Oksana made sure to point that out at least 3 times. I wanted to die. Then the doctor came in, messed with her legs a bit, watched her walk, and basically told me that I have no options. If she can't use the forearm crutches I have to wait until she is mature enough to understand how to use them and how they can help her. I asked her what she expected Oksana to do in school. She told me that she needs an aid to hold her hand. Ummm...I came here to try to give her independence not to have someone hold her hand through school. I was also told that she doesn't need botox. That's fine with me but I'm curious why AR Children's Hospital feels differently. Then they told me that they think she has a movement disorder because when she walks around she flaps her hands and makes jerky motions. Because of this they wanted her to see the neurologist who normally isn't in but happens to be there today and had 2 cancellations in the afternoon. She does these motions when she is acting silly, and I knew she didn't have a movement disorder, but I really wanted to see a neurologist to get another point of view on her MRI so I jumped at the opportunity even though it turned our day from a 3 hour day to a 7 1/2 hour day.

Next, they sent me off to get her casted for new AFOs. Apparently they had a better idea for how they could be done to help increase Oksana's stability. Now she will have a hinge at the heel. I'm willing to try anything, so she got casted and we will go back in 4-6 weeks when they come in.

After casting we had 2 hours to kill before neurology so we got some lunch.

Our neurology appointment started with Oksana being examined, and it was a rather thorough examination. After examining her, the doctor left the room to consult with another doctor and didn't come back for about an hour. When they both came back they watched her walk (Oksana knew those halls well by the end of this), and then actually showed me the MRI and explained it to me which was great. His prognosis wasn't quite as grim as the one we got from Arkansas Children's Hospital. Then I mentioned the "fluffy brain" vs. "shrunken brain" comment that they made and he immediately pulled out his measuring tape.

I'll stop here to mention that we committed to Oksana knowing that she had a diagnosis of microcephaly on her records. When we got to the orphanage the doctor assured us that it was an incorrect diagnosis. Any time we have mentioned it to a doctor they have looked at her and basically brushed it off. This, however, was the first time that someone ever pulled out a measuring tape and wouldn't you know it, her head measures at 2% on the growth chart which is more than 2 standard deviations below the norm and therefore falls in the range of microcephaly. If you can be shocked and not shocked at the same time it describes how I felt. He then said that this gives her more of a grim prognosis for her ability to function at a "normal" (I don't like that word) level. So while the diagnosis is new the prognosis really hasn't changed.

I still think I'd like to talk to another doctor about this but after doing some research it seems that we need to face the reality that we are likely looking at microcephaly now.

We came home exhausted and now I have to process everything I was told. High on my to do list is finding a therapist to help her use forearm crutches. Falling through the halls at school and grabbing onto other kids to get her balance is not an option....neither is having her hand held all the time. So as you can see I have a lot to think about in the coming weeks.