111th day away from home (May 10)
Aiden is laughing it up in the video below. Not the best quality but it is great!
107th day away from home (May 7)
Aiden enjoyed his time with Grandma & Papa last week, and is now back at CHB for a couple more tests this week. The results came back from the manometry testing and the diagnosis is, according to the Doctors, not a good one.
The test results show that Aiden’s small intestine is not functioning and not responding to any of the various medications or challenges that can be used to force the intestines to function. When comparing last year’s results for the same testing process against the most recent test, it represents a dramatic and rapid change.
This type of dysfunction generally spreads to the large intestines, stomach, colon, etc., and would substantially worsen over time. It is difficult for them to say how conclusive this is but the inconsistencies between the last round of tests are not good, particularly given the rapid degeneration.
At the same time the doctors are somewhat puzzled because (in their words) “Aiden is once again a mystery.” His other test results and symptoms are not consistent with what they normally see with this type of disease. Given the many inconsistencies, they feel that there may be another underlying cause for the dysfunction and want to do some additional Genetics/Metabolism/Mitochondrial testing. Earlier this week, they did some blood work and sent it off to a special research lab for gene sequencing. In the meantime, we are waiting to hear back as to whether or not they can schedule a special type of neural MRI for Aiden. Right now, it is setup for May 28th and we are trying (and praying) to get it scheduled by early next week.
With the weather heating up, E&E get to splash in the pool and can’t get enough of it. The water is not quite warm enough to go in so they put their feet in (of course, sometimes they try to jump in!).
The video below is of Aiden letting everyone know how much he misses them (with a little help from his Aunt Amisha).
Getting ready to Skype with Daddy
Hard to tell which one is happier
A good bye kiss to Grandma
Looking forward to some splashing
They can’t get enough
He liked his tie
Mowing in his dress clothes
Evan doesn’t want to pose