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December GI Update

I must be getting soft in my old age or something because today wore me out. The big kids are still in school and Donny is off today and tomorrow for Christmas, so he took them to school while I tried to get Raya to eat another Nutrigrain bar. Tried being the operative word. This time she just wanted to smash it and throw sticky crumbs all over the floor I swept AND mopped yesterday. The nerve. :) She did eventually come back and eat half of it though.

After I ran a couple errands, we went to order Donny's glasses and then went to watch Ashtyn in her little class play. Raya lasted all of 10 minutes before she was drawing too much attention and I decided to leave. It was almost time to go to her GI appointment anyway so it was fine.

When we got to the clinic, Raya's insomnia had finally caught up to her and she was asleep. Since we were early we say in the car for a few minutes. I expected her to wake up any time but she didn't. She slept through me unbuckling the carseat, pulling her out, walking down the sidewalk with the cold wind on her, checking in, and sitting down to wait. I was shocked because this kind of thing NEVER happens with Raya anymore. When we checked in, the lady told me that Raya's doctor was running late, but the longer I sat there with my warm, sweet-smelling, soft-haired, sleeping Raya snuggled up on my lap, the more grateful I was that the doctor was behind schedule.

At one point I couldn't help but get tears in my eyes because Raya almost never falls asleep anywhere but in her bed or sometimes the car, and it's even more rare for her to stay asleep when we get her out of the car. On top of that, our doctor is rarely behind schedule. We're usually in the waiting room for 10 minutes or less. The stars aligned and it was a little Christmas miracle just for me. :) We snuggled for about 30 minutes, even when a herd of rowdy boys came in and were racing each other around the waiting room and climbing all over the benches.

Once we were in the room, she woke up and we got her weighed & measured. While we waited for the doctor, Raya colored and read books.

It was a pretty good visit. Her weight only went up by about 9 oz since her last visit in October, which isn't great. She's got a cushion though and it was still a gain and not a loss, but I had hoped it would be more. In my opinion, I think it's because we're now counting whatever calories she eats whether there's any nutritional value to them or not and subtracting them from her formula calories for the day. I've struggled a bit with feeling like it's ok to replace nutritionally complete calories with whatever she feels like eating that day plus some kind of oil or fatty calorie booster to get her up to her goal for the day. I get that there are reasons for it but it's something I have a hard time with, and that's another post for another day. :)

We went through our usual list of topics (meds, feeding schedule, poop, etc.) and she asked if there was anything out of the ordinary going on. I told her about when I checked to see how much was left in her stomach one day this week and 3.5 hours after the only feed she'd had that day, there was still 50% or more of the volume in her stomach. Motility is so... I don't even know what word I'm looking for. It can be slow one day and really fast the next. I think it's been on the slow side lately. Three and a half HOURS should be more than enough time for 7.5 ounces of easy-to-digest peptide based liquid formula to leave Raya's stomach. We've also been seeing more leakage (formula/liquefied food) from her stoma, which other moms have told me happens to their kids when motility is slow. We also need to change her Mic-key button soon and that might have something to do with the leakage too.

The problem is that there's really not much we can do about it. The 2 drugs we would most likely use to help her motility are
Reglan and Eryped (EES). Reglan is a "black box warning" drug with all kinds of nasty possible side effects, and EES is an antibiotic. She's been on both of them before with no visible results. Her doctor and I both agreed that unless she starts vomiting again, the motility drugs aren't worth the risks associated.
She also reminded me that motility can be affected by viruses, and that Raya could have had something without us realizing it, and that could have slowed things down. That just reaffirmed to me how important it is for Raya to stay healthy. I know it sounds dramatic but a stomach virus that would make a healthy kids sick for a couple days could be far more serious for a kid with Raya's medical history. Her vomiting could start again and not stop when the virus is gone, or it could cause her gut to shut down altogether, or she could be totally fine. There's no telling what could happen. This is why we aren't taking her anywhere we don't absolutely have to. It's not personal, we're just trying to do what's best for Raya.

One of the other things we talked about is Neurontin. It's a medication Raya's been on for a long time and because she's been on it so long, I've been wondering if keeping her on it is the right thing to do. She was diagnosed last year with "visceral hyperalgesia," which is fancy medical talk for hypersensitive gut. The motility specialist that evaluated her last year felt was responsible for at least some of the vomiting she experienced for such a long time. Neurontin is an anti-convulsant and is used for nerve pain, and it has been a good med for her.
Parrt of me feels like if she's been on it for over 18 months and we haven't increased her dosage since January, maybe she doesn't need it anymore. On the other hand, the dose she's on is still considered a moderate dose for her weight, so that could be the thing that's keeping her body from overreacting to sensations in her gut and keeping her from vomiting. It's a tough call. Ultimately, and in light of some of the symptoms she's had lately, we decided to keep her on it, and we're going to increase her dose to see if things improve. If there isn't any change, we'll reconsider taking her off of it. The prospect of weaning heer off of another heavy med isn't very appealing to me after the way it was the last time but it has to happen sometime. We'll see what the next few days bring.
We plan on continuing the periactin but I'm going to try giving it to her in the morning instead of in the evening to see if it helps with the insomnia. She was surprised to hear that it was having that effect on Raya but it doesn't really surprise methat much. Raya doesn't like to follow the rules. :)
That was pretty much it for this visit. Oh, but we did talk about how much we both miss our favorite nurse. :( We love you, Rebekah! :) A couple of the other nurses have been really sick and the new ones haven't been able to get all of the training they need so things are kind of a mess right now. I'm glad things have been calm enough with Raya that we haven't needed any special attention.
In other news, I've decided that we don't need to see the genetics specialist next month like we're scheduled to. Long story short, I don't feel like there is any indication that any of Raya's health problems have been caused by anything genetic, and none of her labs have ever been abnormal enough to indicate a metabolic disorder. The neurologist is out until after the new year but if I don't hear from her that there's any reason to see genetics, we'll save ourselves the trip.
She looks pretty perfect to me! :)


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