Alex and Maddy

Alex and Maddy

Wednesday, August 18, 2010

What a Whirlwind!

Whew! What a crazy 6 weeks we have had. I can barely catch my breath!!! On Saturday, Bruce's mom flew in. On Sunday, Bruce's sister joined us. It has been way too long since we have seen them. Grandma hasn't seen Alex in a few years and Cassie hasn't seen him since he was a baby. Sunday we just enjoyed some quiet time. Monday we went to the zoo in the unbearable heat and showed Aunt Cassie around texas.I loved watching them enjoy getting to know him again. He fell in love instantly. He was glued to Cassie's hip. He can't wait until they can come visit again. Tuesday they got twatch him do therapy and then off to a tearful goodbye at the airport. We hope next time we can have a longer visit!

Julie and Cass- Thanks for coming to visit. We loved having you guys. We hate that we don't get to see you more often. My biggest wish is that we could see ALL our family more often.

For our medical update....Labs when we got home were pretty good. Buggy is having trouble keeping his Vitamin B12 at an acceptable level. We also realized that his keppra (seizure med) level in his blood is too low which explains the increase in seizure activity we have seen. The problem is that he is getting "enough" of both of these meds. He just doesn't absorb anything like he should. This also explains why he can never gain weight. Dr. Koenig and Dr. Navarro (GI) are brainstorming and trying to come up with the best solution.

This morning we saw a local metabolic geneticist that we see once a year in the rare case that we have to be hospitalized locally. We need to have someone who can advocate for Alex's metabolic needs. She thinks that Alex clinically "screams" a certain form of mito (mainly pancreatic, liver and hematology issues). However, we had done the bloodwork for this syndrome a few years back and it was negative. She says there is research that shows that sometimes it shows in other tissues and not the blood. She will be consulting with Dr. K to see about testing Alex's liver (we have a sample left from his biopsy) for this syndrome. Other then that I just filled her in on the last year's worth of history and we were on our way.

We have a few days to slow down and then we head back to Houston the last week of August for some appts.

Here are a few pics of Alex and cayman that I never got to include.


1 comment:

  1. Looks like you guys are having a lot of fun!!!

    I'm interested in the type of mito that the local dr is looking into. Is it Pearson's ? We tested Eithene for this too and she was negative, but she also has many of the clinical symptoms (although not all). Her metabolic specialist thinks she has a very similar issue and regularly refers to her "Person's type syndrome". I'd be interested to hear what your drs come up with!

    Jessica :)