Monday, April 14, 2008
This weekend we took Braden for his very first haircut. Don't cry ladies, he is still quite the handsome man with his new "do"... still curly, just shorter. And did I mention, WAY more manageable?? :-) He did so great - we took him to a place that specializes in kids cuts, and the hair stylist was so excited not to have a 'cryer' for his first haircut:-)
We are busy planning the birthday bash... and so excited for things to all come together. I think it will be a really fun day for all the kids and parents alike. We are making our very own "sprayground", since the local one will not open until Labor Day. We will do our best to rival it with our own smattering of pools and sprinklers for all sizes to enjoy.
We hope you like the pics of our little man's new hairdo!!
LATEST DNA TESTING results:
THE GOOD NEWS is that all tests have come back negative for extra genome information, missing chromosomal information, and for particular syndromes. This also means we have practically exhausted the possibility that this is a gene that can be passed on to other future children. (Again, I stress 'practically', since there is always the smallest fraction of a percentage that we cannot find the information through all the tests we have had done.)
THE BAD NEWS is that now the only thing left for us to do is the muscle biopsy. Our entire medical team is on board to do the procedure, but NOT voluntary. So this means, our last hope for answers will unfortunately come at a time when Braden is scheduled for another surgery, or is so sick that he has to be intubated. Since there is a CHANCE that his condition is at a mitochondrial or metabolic level, there will be certain anti-epileptic drugs we will need to stay away from until we know for sure, once the muscle biopsy has been done.
So for now, we continue to diagnose "Braden disease" as he progresses. In some other positive news... Braden saw a therapist last week that we hadn't seen since the NICU, and she was pleased with his progress thus far. That gave us a lift of inspiration to continue the path that we are on continuing weekly and bi-monthly therapies... they ARE making a difference:-) It's those little reassurances along the way in this world of uncertainty that is our normal that really helps us keep it all in perspective.
Check back soon for more birthday updates!