Falling Into Place

Today's update is very upbeat. We haven't gotten the green light for going home yet, but it is starting to feel like they are working up to it. Last night Silje took all but about 35ml of her nightly feeds from a bottle. The part they had to put in her tube was at 8:30 last night--which was a little unfair since she had just finished eating at around 7:00. Her normal feeds are three hours apart, so asking her to do one an hour and a half early was probably a bit much. All of the others (midnight, 3:00 and 6:00), she took the whole 65ml from a bottle. And all day today she nursed from mommy like a champ. So, her feeds are definitely getting better.

They came and did a follow-up echo cardiogram today. We didn't get the results of that today, and the tech doing the procedure wasn't giving up any hints, but from just looking at the image with my untrained eye, it looked pretty good. If the echo looks good to the doctors, then Silje can reduce her meds by one.

Next, one of the worries with Interrupted Aortic Arch is that it is often accompanied by something called DiGeorge Syndrome. DiGeorge Syndrome, for those who like to consult Dr. Google, is associated with all sorts of horrible and dreadful things. (To be honest, I haven't actually consulted Dr. Google myself because there's no sense scaring oneself silly any more than one has to!) AND, DiGeorge is really more associated with Type B interrupted arch than with Type A interrupted arch. Silje has/had Type A. But, they did the chromosome test just the same. Today the nurse looked it up in her chart--since no one had told us yet what the result was--and it appears that her chromosome test came back normal. Which, I guess, means that there is no DiGeorge Syndrome. (Thank goodness!)

They also did the MRI today. The results were somewhat expected and are, I have to say with much relief, very positive. They weren't perfect, but we didn't expect them to be. But, and this is the main thing, we can expect no effect whatsoever on her development from the small spots picked up on the MRI. That is, her seizures where caused by something (they can't say exactly what), and that something left some small spots in the MRI. Those spots, however, are something that the brain will completely work around as Silje develops. The neurologist said that she has seen kids that haven't had seizures, who have had no symptoms whatsoever, who have similar spots in MRIs done on them. She went on to say that in the normal aging process, a person can expect to get one such spot per decade of life--that is, a person of 50 probably has five or so such spots. So, in a couple of months, they will re-evaluate Silje and see if she can be taken off the medication that stopped the seizures. It seems that the expectation is that she will no longer need that medicine and the seizures will be gone.

So, it seems that the pieces are falling into place and it looks more and more like we will get to take Silje home in the next few days.

Keep those positive vibes coming. We still hear from many of you every day and we really appreciate the support.