Wednesday, March 23, 2011

Independence Day






The kids are growing up and gaining more independence. They are at an amazing age, enjoying more things and finding their senses of humor. Yesterday was the first day the two of them rode their bikes to school and home. While I think the overall experience was somewhat disappointing for Tagg, Saylor loved the freedom.

Tuesday, March 22, 2011

March 2011




It was Tagg's turn to get braces, and once again, it was a family project.
He did great!

Wednesday, March 16, 2011

NIH









As most of you know, my immune system does not function at full capacity and can cause a variety of interesting issues. While I have been fairly healthy over the last 14 years of living with CVID, in the past year I have struggled with GI problems that have lead me to some significant weight loss. As I began approaching my fabulous physicians, there was a general consensus that GI problems were just part of the natural progression of CVID. My best-friend in Montana, Colleen, found a research study at the National Institute of Health (NIH) in Bethesda MD that is looking at GI abnormalities in people with CVID. This study is with the most knowledgable experts in the field of CVID, so Colleen and I traveled to Bethesda for the initial screening process.
Colleen was able to get tickets for a White House tour through her congressman, Ben Nelson denied me as I didn't ask 4 months in advance. We were really excited, even though the tour started at 7:30am and we had to pay for a taxi because the metros don't run that early on Saturday, we were convinced we would be at least seeing the first dog, Bo. Sadly, the tour was very disappointing, we were only allowed to see a few select rooms that were roped off and it was self-guided tour. It was frustrating to go to a lot of effort for such a ridiculous tour. But, on Monday when we finished at the NIH we went back to the White House to see Michelle's garden and we saw BO! Look closely at the pictures to see the adult person with BO..

Catching up




In February, Sarah and her family came to celebrate Jude's 2nd birthday. We had a cape themed birthday party, everyone decorated cupcakes and opened gifts. It is fun to watch the kids interact with one another and enjoy being together. We feel so grateful that Sarah and Chris are willing to drive the 6 1/2 hours to get to Hastings.