7.19.11

So lets see...

Since my last post what has happened...

We met with Neurodevelopmental for her regular check in with Dr Walker. It was...very confusing. This was one of three departments that wanted to see the results from her brain MRI. Neurodevelopmental was primarily looking at the development of her myelin. When we had her first brain MRI at 10 months old, her myelin was only developed to about a 3 month old stage. Now, apparently, her myelin has caught up to over a 2 year old stage in all but one area of her brain. This sounds like amazingly good news and it is good, but it apparently doesn't mean anything. Or at least, they don't know what it means. Clearly she isn't caught up or catching up developmentally, even though she has made slight progress. Dr Walker didn't have any insight into what this meant for her future.

Basically, I walked out of that office completely lost. Although I knew this wasn't the root cause of all problems, I thought it was causing several of the issues that we see in Aimee. Apparently delayed myelination is just another symptom of whatever primary issue she has. Sigh... So I feel like we know less than we ever knew.

The other doctor who wanted to see the MRI was the Genetic Neurologist (the one that had given us life expectancy, ect). I emailed this doctor to see if he had looked at the results and this was the reply I received back:

Aimee's new brain scan shows the same subtle abnormalities as on her 1st
scan, plus subtle atrophy (shrinkage) of brain tissue compared to the 1st
scan. This is quite subtle although I think it is real. This may be related
to her seizures, or might be part of her underlying condition. Hard to know
at this point. The scan does not give new clues regarding the underlying
cause of her condition.

The subtle abnormalities I see on both of her scans include mildly small
convolutions over the front of the brain, mildly small hippocampi, mildly
slow maturation of her white matter, and mildly enlarged ventricles (fluid
spaces in the brain). None of these are very specific.

We have one clinical test underway (testing the gene "CDKL5"). Some
research testing may be possible, and I will discuss this with
the other physicians in my lab.

Although I appreciate his response, it doesn't speak volumes to me. Basically, in my understanding, what he sees doesn't give him much information at all. Don't really like the brain shrinkage part, but I have no idea what it actually means.

We met with Cascade Orthotics last week to have Aimee fitted for special shoes to wear when we do weight bearing therapy exercises. We will be picking them up at a follow up appointment next week. We will also be having her fitted with elbow braces and hand mits for this purpose.

Yesterday I took her in for her first real dentist experience. It was such a great one too. Since this Pediatric Dentist is affiliated with Children's/UW, they had access to all of her records. They knew ahead of time that she gets easily overwhelmed and set up a special side room to see us in that was completely quiet. It was really helpful. She was able to stay in her chair the whole time which also really helped her comfort level. All her teeth were checked and she got her first cleaning. Always such a nice feeling. :)

There are a few exciting things coming up this next month. In 3 weeks we get to have an ultrasound for little Baby DeVoe and hopefully find out gender, ect. In about a month, we get to take Aimee in for another Swallow Study. I'm very excited and hopeful that we will get positive results from this study. How amazing would it be to work towards getting her more food by mouth! I miss feeding my sweetie.

-Aimee's new nightly activity is kicking off her bar. The tricky part is finding all the pieces when she is successful!-