Our short 2 month catch up...

First off, let me apologize for being so delayed in writing you an update. In truth, since my last post in October, we have gone through a very monotonous trend of altering Claire’s drugs, followed by some improvement, a steady decline, then an adjustment of drugs again after two weeks. That effectively sums the last two months.

Beyond that, we have tried to incorporate development therapy into the times Claire is conscience enough to interact with us. These times are infrequent and cyclical. On average we get 5 hours of awake time for Claire every other day. If this doesn’t sound like much, its not. But we cherish every moment we get. Claire will be spoon fed during those times and exercise. Most recently we’ve worked her on rolling over and strengthening her neck so she gains head control. We have actually seen some strides in these areas. Claire is slightly more mobile on her own now—we now have to watch her so she doesn’t scoot her way off the Ottoman.

She is growing fast—slightly ahead of clothing sizes. We also just upgraded her to a toddler car seat. We find that our “don’t fit” box is very full and her dresser is getting light quickly.

We have a consultation with Metobolics at OHSU on December 28. We are working on Claire’s Mitococktail—a milkshake of suppliments to aid her Mitochondrial deficiencies. We have steadily added suppliments over the past couple months. The Neurology Doctor will also be present at the consult. To be honest, I don’t know what to expect from the visit, but I do know that the Doctors at OHSU have discussed Claire frequently.