Monday, December 31, 2012

I'm back

First off I apologize for being gone for so long. With the end of my pregnancy things just got crazy and I ended up just posting bits and pieces to facebook and twitter rather than sitting down to actually write.

Now that Alvin's baby sister is here and I'm back at work, things are starting to calm down  just a little. Well at least until the first of the year.

The biggest thing going on right now is our family was asked to participate in a research study at Seattle Children's Hospital. Its called the Comprehensive Care Management study. About 600 families were selected and of those half are in the control group and half are in the intervention group. We are in the intervention group and are meeting with staff once a month to meet with a pediatrician, dietitian  nurse practitioner and when needed a social worker. The first meeting we had was rough. It was 2.5 hours of meeting with each individual on the team and going over everything that has happened up until that point. From the autism/asperger's diagnosis to the more recent hydrocephalus discovery. It was draining to say the least. The staff was great but in the end it felt like everything we had ever done for him was questioned.

We met with a nutritionist, doctor and nurse for 3 months straight once a month to go over not only health issues but also his weight issues. Now that things are calming down we have a 3 month break and in that time he will be seen by a pediatric dentist who specializes in autistic kids, a neurogenetics screen and the staff is having us re-do is autism screen as well just to be sure we know the extent of his autism.

We had another scare with his seizures returning and so far the MRI's show that his ETV path is clear but the underlying cause is still unknown. I can't stress enough how great the staff at Seattle Children's has been through all of this. The doctors, nurses and all staff we have interacted with have been wonderful in accommodating him as well as the rest of the family. The staff in the research study haven't treated us like a number but as actual people that are doing the best we can with what we have been dealt.

So this next year I plan to be back. I have a lot of things I want to talk about. Some with autism and some with hydrocephalus and some with both. So I apologize for being gone for so long but my plan is in 2013 to be back in force to talk about life and issues that come from having a son that is literally one in a million.