14 Nov '05 - 259 W - + 21 - 13 In other news...
There is so much going on with Alex these days, that we sometimes
actually forget that we still have feeding issues and stuff like
that! I am LOVING this fall because he is making so much progress
and is just having the time of his life. In any case, for those
of you who wonder, here is the medical stuff.
About a week or so ago, we discovered that Alex had managed to get his
feeding tube wrapped around his neck while sleeping. At the time,
we were just starting to wean his night feeds, but this really scared
us. Before that point, he was taking maybe a 3-4 ounce bolus
(tube meal) at a time, and was taking about 20 ounces of formula
overnight. Now, about a week later, he is taking just two 7-ounce
boluses of food at night. This means a few things. One, he
is off the feeding pump entirely. Two, he is taking bigger meals,
and his food ends earlier in the night...which leads to better eating
during the day because he's hungier. Over the next few weeks,
we're going to be decreasing his food at night by about 2-3 ounces a
week. If Alex continues to gain weight, or even if he levels off,
he may be off tube feeds by Christmas. His tube would be left in
for a while to be sure that his progress is permanent, but he's taking
huge steps towards being a tubeless kid!!
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Sucks about the mono…I’m sorry. I hope they caught it soon enough that you don’t suffer too long.
So good about Alex eating so well though! Hope I get to see you soon! xo Abigail
Abigail () - 14 November '05 - 22:35
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Boy, Abigail said it all—that really sucks about the mono. It is really so exciting to keep up with Alex’s progress. Just think of this as a little bump in the road—I know, who needs any bumps? You all are in my prayers.
Aunt Sheila
Sheila () - 14 November '05 - 23:16