Happy Memorial Day

Quick update. Aiden is doing well (still vomits but not as much) and is in love with Evan. Everything is “Evan” or “go see Evan.” Additionally, he is a mimic. Manish called him that the other day and now he runs around and says “mimic…mimic.”

Below is some video of Evan showing off for Aiden and the boys attempting to eat soup in a civilized manner (certainly a ‘youtube’ moment).

    Together Again

    Aiden simply can’t get enough of his brothers. The first thing he says when he wakes up is “go see Evan…go see Ethey.” When they are at school/daycare, he asks for them all day and is thrilled when they are back home.

    Of course, the twins don’t pay as much attention to him. They do their own thing with each other and Aiden sort of follows them around. Even so, he is glad to be with them. In fact, he often holds and hugs them and they start to whine about it. It is so cute as all he wants is them.

    Since he got home, he has done quite well. There are still some bad days where he throws up a handful of times but then there have also been consecutive days where he does not throw up at all.

    With summer almost here it is heating up outside and soon the boys will out in the pool. They can’t wait!

    They love their firehats

    The boys at their “ceremony” for the end of the spring daycare program

    I tried a new hairstyle on Aiden

    A neighbor of ours has some dogs and the boys enjoyed being entertained

    I was worried they might get scared

    That is, that the dogs might get scared

    Of course these two loved it!

    Now, its his turn

    Ethan, please wear your own shoes!

    He just had a haircut a couple week ago

    The ‘trips’ are back together

    Like old times

      The Return

      After 114 days, Aiden (and Hannah) are finally back home!

      All things considered, he is doing quite well. Although he still vomits, it seems to be less than he previously did. Of course, time will tell how well he does so please continue to keep him in your prayers!

      Below are a couple of videos. The first is Ethan’s reaction when he sees Hannah (in slow motion). The second is of Aiden ‘dancing’ just before he left Boston.

       

       

       

        Not good, but not conclusive

        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).

         

         

         

        Simply Aiden

        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