Tuesday, March 04, 2008
Brian & Jenny visit; Trip to Houston: Genetics; and ANOTHER pneumonia
Braden had the pleasure of hosting his godparents two weeks ago, uncle Brian and aunt Jenny. Aunt Jenny read him bedtime stories and napped with him while she got her rest growing us a cousin for Braden. One of the neatest moments of their time her, was that when Jenny was holding Braden, his little cousin was kicking him and somewhat "claiming his own territory". Uncle Brian told him stories about building stuff for outer space, and surprisingly he didn't go to sleep:-)
Last week we traveled to Houston to meet with a genetics doctor who specializes in mitochondrial disorders. After much discussion about Braden's gradual progress over the past two years, we are less certain that he suffers from a disorder of this nature. However, they took blood to run tests for some other things to look at genetically. Some of it is over my head, but from what I understand they will be looking at "micro-rays" on the DNA which looks at little spots of extra or missing information, they will be looking for similar information on his "X" gene, and also looking for information on transferrence of some nature (wish I had more to share, but this one was kind of over my head). Once these tests are back in about 6 weeks, we will be able to decide if a muscle biopsy will be in our future or not. We have decided at this time not to pursue it on it's own, since Braden would need anesthesia & he doesn't do too good coming off of it, so if an opportunity arises for us to do it while he is already intubated, we will do that. Otherwise we will hold off indefinitely.
So the picture of the dancing pigs are statues in the Clinical Building at Texas Children's Hospital, where Braden's genetics doctor and neurologist have their offices.
This past weekend Jackson and Braden got together to take some Easter photos together - so be looking forward to those in the coming weeks.
Yesterday we were diagnosed with yet ANOTHER case of pneumonia, this one more severe than the last, as his white cell count was very high at the 25,000 level (normal is 8,000 - 12,000), and a mere 2,000 shy of a forced PICU admit. We have convinced our team to once again treat him at home, however, we are on strict orders to bring him in should we not see adequate progress - so please keep our little fighting Braden in your prayers for a quick recovery. We will be reevaluated on Friday.
Thanks for checking in on us!