Our Water Baby!

Tweet WHEW!  I can keep Klaw!  He loves the water!!!  We weren't able to stay in the pool for very long because the thunder started rolling, but it was fun anyways!  He was a pro - already kicking & sticking his face in the water without my prompting.  I can't wait to start swim lessons.

and just because he's so darn cute...

Genetics Appointment

Tweet It's been several weeks since our last appointment with Dr. Proud at CHKD.  Everybody is SUPER happy with Klaw's progress.  He is just over 15lbs and 25" long.  His height/weight ratio is in near perfect proportion.  He flirted with everyone (including the phlebotomist right before she stuck him!).  His heart sounds great and his liver felt just fine.

The did take a urine sample & more blood so that the could check his l-carnitine and c-14 levels (I expect them to be his "normal").  We are also going ahead & getting his DNA profile done so that we can see exactly which VLCADD mutation we are dealing with.  Evidently, story of our life with VLCADD, Tricare will not want to cover this and we will be fighting them once again.  Yay.  After we get a read on Klaw's mutation, Chris & I will get our DNA profiled to find out which mutation(s) we carry.  I can't really explain it better than this, but the different mutations correspond with different "types" of VLCADD and will give us a better idea of what we may or may not be facing down the road with Klaw.  Dr. Proud let us know how much this DNA workup will cost out of pocket for Klaw - I don't want to even repeat it here.  Yes, it's that bad.

Yes, I know I need to post more recent pictures of Klaw.  I'll get on it soon, I promise.

EFMP

Tweet Well, we were finally approved for the Navy's Exceptional Family Member Program (EFMP).  Due to the severity of Klaw's medical condition, we are Category V.  In addition to limiting which bases where we can be stationed (Rotten Groton, CT is NOT on the list!), this classification allows for homesteading at a naval base that is large enough to do multiple sea/shore duty rotations.  It has to be updated every 3 years, which is just about perfect because by the time Klaw is 3, we should have a better handle on what we are going to be dealing with as far as future health issues are concerned.  We really like the doctors who are caring for Klaw at this time so it's good to know that we will not have to move for at least 3 years.

Now, we are just waiting to find out when Chris can come home...