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Wednesday, August 31, 2011

GI visit and a sad farewell

We had a bittersweet GI visit today. As far as the GI stuff goes, it was great. Raya has made a full 180 when it comes to how she handles doctor appointments. It used to be that she started crying as soon as we walked in the room and we couldn't leave the clinic without her vomiting at least once. NOW on the other hand, Raya waltzes in there like she owns the place.
She holds out her arm to get her blood pressure taken, holds still while we lay her on the measuring board, sits still while she's on the scale, and actually smiles at everybody. Even the doctor. :) I don't know how her doctor was ever able to hear anything with the stethoscope while Raya was screaming and trying to get away from her before but now she just lays there perfectly still and I think she actually enjoys it. :)
Today she weighed 25 lbs 9.5 oz (11.6-ish kg) and was about 33 inches tall. I think there's a bit of a discrepancy between the scale at the GI doctor's office and the scale at the allergist's office because last week she weighed 26 lbs 5 oz on their scale. She had clothes on when the allergist's office weighed her but I don't know if it was 12 ounces' worth. :)
Her doctor is pleased as punch with the way things are going. I don't think either one of us thought things would go as well as they have in the first month of being back on the G tube. She's doing SO well GI-wise even compared to where she was a month or two ago. I'm happy to say that I've almost forgotten what bile smells like. (almost. some things you never really forget. :) Right now, I'm feeling like I felt back in April and the beginning of May when I realized that things with Raya had suddenly gotten to be very low maintenance. I remember thinking that I needed to just enjoy the calm while it lasted because you never know what's around the next corner. I do hope that the roughest times with Raya are behind us but I'm not naive enough to really believe that anymore because you NEVER know what can happen with ANY kid, and especially one with a medical chart that weighs 5 lbs. (no, really, it weighs 5 lbs. the MA set it down on the scale once.)
Anyway, so the plan is to continue weaning her off of the amitriptyline. Did I mention that we're weaning off the amitriptyline? Or how very excited I am that we're weaning off the amitriptyline? Oh, how I hate that medication. I won't even go into all the reasons why, but it has become a giant thorn in my side. In all fairness, I do believe that it was a big part of the reason why we've had almost 3 vomit-free months. It did what she needed it to do and now she doesn't need it anymore. She's had a lot more reflux symptoms this week (spitting up, coughing, etc) but it's most likely because of the stuffy nose she's had. She'll take it for 5 more days and then she'll be off of it for good. We're going to give Raya some time to make sure she's okay off of it and if that goes well, we'll start weaning off of the neurontin next. Progress!
As far as feeding goes, Dr. S wants us to start shifting more of the night calories to the daytime and increase the amount she gets in her bolus feeds. She also still wants 720ml of formula calories a day so that she's nutritionally complete and getting the calcium & protein she needs. Hopefully I can figure out how to do that without clashing with what the feeding therapists want us to do with her.

Okay, so on to the sad farewell part. I may actually cry. Really. Our wonderful, amazing, sweet, hard-working, just plain awesome GI nurse Rebekah is leaving. She's due with her first baby in a couple of weeks and then she'll be moving out of state after that. I can't say enough good things about her. I know there have been times where just taking care of our needs has been a full-time job for her. She has fought with home health and insurance for us, begged and pleaded for Raya to get in for the motility testing in Ohio, gotten us in for urgent appointments and tests at the hospital when we've needed them, answered countless questions, and pretty much done whatever we've needed her to for the last 19 months. We've been able to avoid so many doctor visits just because I can call or email her if we're having a problem and she'll talk to the doctor and email me back to tell me what we need to do. I actually emailed her on Monday and said, "I don't really have anything to say, it just felt wrong that I've gone a whole week without emailing you." :) This whole experience has been tough, but it would have been so much more difficult for me without Rebekah's support.
lousy cell phone picture, bummer :)
I don't know how we'll survive without her but I guess we'll have to. We love her and we're sad to see her go but she'll be an amazing mom and we're happy for her.

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