Two down more to go in LaRae's fight with Arthrogryposis

Dr.Scwartz Peds

We have two more doctor appointments under our belt. I'm keeping a very positive and realistic outlook on everything right.

Everything that can go wrong will. Here's what I mean, on my way two the doctor's appt. My windshield whippers broke and not just the blades they won't turn on. So now I have to check the weather because I can't drive the van in any kind of bad weather. That would be my luck right. However, I'm still keeping a positive outlook. It could of been worse it could of been the motor instead. (knock on wood it wasn't) So any way back to the doctors appointments.

LaRae saw her pediatrician on Thursday 12/10/2009. They did a weight check, she gained 4oz. She's backed up again so it kinda canceled it out. So we really don't know what she really weighs. LaRae has to go back in a month for another weight check. She had another abdominal x-ray to see if she was impacted again. She is backed up again so they changed her meds again.
The doctor did say that LaRae's constipation probably is from the syrinx. She has to have an ultra-sound of her bladder and kidneys now. They are mostly likely are affected from the syrinx too. She been showing sign of it they just never link it to the syrinx.

LaRae is also having a contact allergic reaction to the cast materials. We are not sure what will happen on Monday at duPont. I have to put a special cream to help with the right arm and it has done wonders already. The left arm is having problems where the cast is so we will have to wait and see.

Dr. Finkel Nueromuscular

Then LaRae saw 4 different people at Chop. The main one was Dr. Finkel he was happy with her improvement. She was having a bad day with standing and that did concern him. As far as her arms, shoulders, and hands he was quite pleased. He did explain the syrinx a little more for me.
1. It's in the Thoraic
2. The fluid runs from T4 to T8
3. 4.1mm
4. They think it's a L1 (which we don't know what that means yet)

We still don't know how good or bad any of this is. I'm trying to get her in to see three different nuero surgeons. It will be awhile before we will have any definite answers. So that it's in a nut shell. She has more doctor appointment this week duPont and Shriner's. She goes to back to see Dr. Finkel in 6 months. He is so sweet on LaRae. She gave hugs and kisses this time.

Threw it all she still has the sweetest smile. It doesn't seem to faze her. She is still so happy and cheerful little girl.