07 November 2011


A few new positive updates on Lula:

She had a follow-up EEG on Friday (with a really irritating tech who kept telling me to "hold her head still" while he tried to put the electrodes on her.  How are you supposed to stop someone from moving their head??) that the neurologist was really pleased with so she has gone down to one dose of ACTH per day. We are having the night nurses do it so we have one less medical task to do ourselves.

Today Lula, mom, and I went to the gastroenterologist. Lula got a new g-tube, which was just in time because the old one was looking like something that might have been fashioned from the junk yard on Sanford and Sons. The plug had broken off so Sam had ingeniously made a plug from an old feeding tube but that started to leak so he plugged the end of something else in that.  Plus the hair clip clamp to keep it all in place made it look like a hot mess.  The new one isn't as flat to her skin but it locks and is much nicer.  The only caveat from the doctor was that it could pop out of her stomach more easily, and much like an earring hole you have to shove something in it ASAP to keep it from closing up.  I am completely impervious to any of this by now, thankfully.

The doctor also decided to give her less food. She has gained so much weight  (she is now 19 pounds!) that they are thinking she doesn't need as much as she is getting and are reducing her to 6 feeds a day from 7.  This may actually solve so many issues that we have and that especially the night nurses have with her being fussy, gassy, and uncomfortable after feedings.  Plus I have more recipes to try with the blended foods now.

We were in an out of there in an hour and a half, so mom and I had some celebratory bubble tea (we were in Flushing) before heading back.

Lula and Sam crashed out on the sofa later, both having had quite a day.

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