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Monday, September 6, 2010

A big milestone for Raya (Thurs 5-20-10)

Raya got to have her first taste of solid food yesterday. We were starting to wonder if that would ever happen! :) Her GI doctor gave us the green light to let her try pears. It went pretty well considering that she hasn't eaten anything or had anything to drink by mouth since the middle of April. I think she only got a tablespoon or 2 but it's a good start. :)

She had a visit with her GI doctor yesterday. Overall, things are going really well. At her 6 month check-up last week she weighed 15 lbs 3 oz and was in the 25th percentile, which is pretty much unheard of around here. :) Kaida was that size at 11 months so it's a huge relief that she's gaining weight nicely now, even if it is because of her 20 hour/day tube feedings. :) The main problem we're having now is that she is vomiting at least once a day in addition to spitting up frequently and we can't figure out why. None of the things we've tried have stopped the vomiting so far.
After much MUCH careful deliberation, we have decided to go ahead with the surgery to put in a G tube so that she won't have to have the NG tube anymore. We have a lot of reasons behind our decision and we feel like it's the right thing to do at this point. We're hoping to get it done before we go out of town in June so the surgeon was kind enough to squeeze us in for a consultation yesterday afternoon so that we could get the process going. We still have to do one more big test before she has her surgery so that the doctor can decide whether or not she needs to have another procedure done at the same time as the G tube. That will happen sometime next week and we'll also be doing her swallow study so that we can find out if she aspirates when she swallows/refluxes and to what degree. The not-so-fun part of that is that she has to go for 5 days without her reflux medication before we can do the other test so she's not going to be a happy camper for the next few days. Not going to sugar-coat things, I'm worn out this week. I hope these next couple of tests will tell us what we need to know so we can move forward & have a happier & more comfortable baby!

PS Just FYI, NG tube=nasogastric tube, i.e. the tube that Raya has now. G tube=gastrostomy/gastric tube, surgically placed directly into the abdomen somewhat like this:
She might end up with a GD or GJ tube, which would go through her stomach and into her small intestine, but I'm not sure on that yet. For more info on G tubes, click here.

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