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New Pump #3

Raya got a present from the home health company today. Remember how I said that one of the things I don't like about the Infinity pump is that the door is on the front so it's not very protected? Well, it's had a little crack in it for a few weeks and the little crack turned into 2 little cracks yesterday. The door wouldn't stay closed anymore and if the door isn't shut, the pump won't run. Big problem for a kid who's on the pump 20 hours a day! Luckily, holding it shut with a rubber band worked temporarily while we were waiting for the manufacturer to send us a new door. Home health surprised us today by bringing us a brand spankin' new pump though and I'm pretty excited about it. Sad, I know. :) As much as I love the adorable little backpack that her pump came in, I really want to make a new bag that would protect the pump a little bit more than the current one does. In all my spare time. :)

So the GI doctor called me back last night to tell me that Raya's labs looked good, meaning that she hasn't lost too much blood and doesn't need to get any blood products. Good news. :) She was also calling to verify that I had been able to get the prescription that I forgot to get from her at her office. I love it when I leave without stuff. :) The medication is called Carafate and what it does is adhere to protein, i.e. blood, so it will coat the "owie" in her stomach/esophagus and protect it so that it can heal better & more quickly. Hopefully it will work so she can feel better. Really though, it hasn't seemed to phase her much. The new med is throwing a wrench into my wonderful sleep schedule though. Instead of feeding her for 10 hours at a time, she now has to be fed for 5 hours, take a 45 minute break, have her medicine, wait 15 minutes and then start the next feed. I really have been spoiled being able to put her in bed and sleep all night so it's okay. :) Honestly, I'm just so grateful to have her that I will gladly take whatever she comes with.

Oh yeah, and she weighs 19 lbs 12.2 oz (8.96kg) and is 28" (71cm) long.


  1. That home health company has sure taken good care of you guys with all of this stuff Raya has needed over the course of her life.


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