Saturday, November 30, 2013

November update...

How is November over? I've been trying to manage my time better and figure out where it all goes... I just counted that Benjamin has had approx. 129 appointments since January (and by approx. I mean there's probably more) and this doesn't include anything related to school. And he has at least 10 more in December!! We are busy and I'm not kidding! :0) Benjamin is changing and learning so much right now. I'm so thankful for all the therapists and specialists we have helping us! Here's a little of what we've been up to:

Here's our Woody for Halloween (couldn't get him to look at us!):
I had to work that night and the boys hung out at home to give out candy so a quick trip to Costco had to suffice for a little Halloween dress up!

Isn't this just adorable? Turned out pretty good for his first school picture:

Now for some updates on Benjamin.

For the past few years, all of Benjamin's specialty doctors keep telling us that we need to revisit genetics. So, the first big test we did  this last month was some genetic testing. (btw, we go up to Doernbecher and all his tests so far have been either blood tests or urine tests) Chromosomal Microarray Analysis was the name of the test they just did. When Benjamin was first born they did a test similar to this. Basically, if Benjamin's genes were a big set of Encyclopedias (remember those!!) the first test checked to make sure Benjamin had a complete set of books A-Z and he did. Now this last genetic test was a deeper look checking to see if Benjamin has all the pages in each of the Encyclopedias. And the test came back NORMAL and he does. There is one more test that would check to see if each page has all the words in the Encyclopedias but the geneticist doesn't think that would be helpful. (Thank goodness because these tests run around $2500 a pop! I'm checking my EOB's everyday hoping insurance will cover most of it! Those stinkers wouldn't give us a definite answer on exactly what they would cover.) We're glad the test came back normal but we are at the end of the road as far as genetic testing goes. They told us to come revisit in 3 years to see if any other tests or new info has come to light. It would be nice to have some more answers about Benjamin or maybe a syndrome that would help give us some direction. For example, if Benjamin was diagnosed with X syndrome, and studies show that 95% of children with X syndrome never develop their speech, that would help us focus on signs and pictures and his communication device. Not that we would ever write anything off, but knowledge is power and the more we understand about Benjamin the better we can help him be the best he can be. But for now, Benjamin seems to be a mystery to almost everybody and so the sky is the limit!!

Next, allergy testing. So Ben and I both have pretty bad allergies. Ben is allergic to grass and I'm allergic to dust. So Benjamin's results - grass, trees, dust and dust mites. hahahah... But no allergies to dogs!! :) In a way I'm so relieved because Benjamin would get sick every time we go to Camp Attitude. Of course, we're practically living in trees and grass! Next time we go I'll be able to manage it better for him. Benjamin is not eligible for allergy shots because of his heart so we will be managing his allergies with some good ol' Zyrtec.

Thanksgiving came and went way to quickly this year. It was absolutely crazy with everyone's work and school schedules, plane flights and of course that blasted Black Friday!! So we officially had Thanksgiving with the Silvermans on Wednesday. Sarah and Raul (Ben's sister) flew in from Texas and we all just have a blast when they're in town! It was busy and short, but the time we did get to spend together was wonderful and we're grateful for that! I had to work on Thanksgiving for a few hours, but when I got off we headed to the Pences (their first Thanksgiving living in OR) and all the cousins were there! Sooo fun!
Below is Max and Benjamin. (You, know, the cool, older cousin, Max.) Benjamin crawled over and sat very close to Max to watch him play on his iPad:

Below is my buddy with his hat and glasses on! Making huge progress here!! Thanks for all the prayers and continuing to be our village!

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