Here’s the latest Rae update.
I think the last I wrote about Rae was after the genetics appointment at Children’s in beginning of April. Now it’s May and a few things have happened.
1) Let me start out by saying RAE IS RUNNING. She’s not walking, she’s running and jumping and bouncing and doing all the awesome things the neuro said she most likely wouldn’t do until we put her in physical therapy! It’s amazing and it’s all thanks to God’s great grace and mercy and power. I’m so proud and excited to see her living a normal one year olds life in that aspect. Yes, she still loses her balance as many one year olds do, and occasionally I’ll see her left side give out from under her, but remember about 3 months ago when the Orthopedist and Neurologist were preparing me for her having Cerebral Palsy?! Well she doesn’t! And I’m so thankful for that!
2) This is less exciting: she’s been throwing up what I think is bile about 3-4 days a week for over a month now. Usually in the morning, sometimes in the evening, sometimes after nap. It’s totally random. And it’s not her formula, which is what you’d expect when she wakes up after her night feed. It’s yellow and disgusting. Her GI put her on Zantac, but even after a week on it, she’s still thrown up that same yellowish bile.
3) We’re hopefully going to John Hopkins. My pediatrician suggested this to us after seeing that Rae’s weight still isn’t consistent. She’s had this 3 week cycle for months now; gain a lot, gain a little, lose weight. Gain, gain a little, lose, over and over and over. Which was frustrating without the NG tube, but now that she’s on the tube, which was meant to keep her weight more stable, she’s STILL doing this. She was down 6 ounces 2 weeks ago and she’s just now back to where she was right before we left for Disney last month. So this doesn’t add up. I sent JH a bunch of her lab work and my pediatricians notes, but I haven’t heard back for an appointment time yet.
4) We may try to wean Rae off the tube next month. Maybe. Depending on her weight, we may cut her night feeds in half and see if she can maintain her weight. If she does, we’ll try to take her off the tube completely. If she can’t maintain, then we will talk about doing a g-tube, the more permanent tube that will require surgery. I’ve been forewarned that trying to wean her may not happen or go well. Since she obviously has a hard time metabolizing and gaining even on the high amount of feeds she’s on now, decreasing it may result in her losing weight. Obviously I hope not, the hope is that she will pick up eating more during the day as her night feeds are decreased. But we’ll cross that bridge when we get there.
5) I try not to think of any doctors appointments as a waste of time, but the nutritionist was the biggest waste of time ever. I basically spent over an hour wresting Little S and Rae to be quiet so I could tell this woman every single thing Rae eats, how much she gets overnight, what we do if she misses a night feed, how many bottles, how many finger foods and every single detail of her meals for her to say, “Huh, yeah. That sounds good to me! Keep doing what you’re doing!” REALLY?! I could have emailed all that info to you instead of driving an hour in rush hour traffic with my 2 tiny children.
6) Her labs came back from Children’s. They called me Tuesday and said for the most part things look okay, but there are a few off numbers to keep our eyes on and “we’ll see if she’s any worse at your next appointment” before making any assumptions from the lab work. Her follow up is in August. So now I’m kicking myself. I should have asked them right then what her labs were and which were “off” and what all it meant. But they said they weren’t worried then, so I didn’t ask. Well now on Saturday I got her results and googled everything that came back abnormal. 4 out of the 6 abnormal results were Mitochondrial Disease markers (according to the the United Mito Foundations website). The other 2 indicated low liver function. I asked my nurse about it today and she agreed, that these were things that should be looked into instead of waiting for.
6) I’m kind of livid about the lab work and why I wasn’t informed that a few of the labs that came back were indicators of exactly what they were looking for (Mitochondrial disease). I’m frustrated that within 8 months of testing and more symptoms showing up we still don’t know what’s wrong. And there is something wrong. A few weeks ago I brought Rae to the pediatrician for her vomiting when it first started becoming more frequent and I actually asked my pediatrician if I was being crazy. Sometimes I feel like I’m being crazy. Am I over analyzing every single thing? Is one thing not even related to the other? What if her constipation, abnormal lab results, inconsistent weight, and now throwing up have nothing to do with each other? What if this is just her “normal”? Would other people be as worried as I am? But my pediatrician said she is concerned about Rae. And that this is probably the weirdest thing she’s ever seen and that she’ll always remember Rae even when she’s 80 as the kid she couldn’t figure out. Which, very strangely makes me feel better that I’m not being insane. I worry about snotty nosed kid I see around Rae and I worry about every ounce of formula that she drinks. I worry about every bite of food she doesn’t eat and I get very upset if there’s a problem with her pump if she doesn’t get her full night feed.
I worry about her.
But I’m glad I’m not crazy.
I just want to know what this is.
Even if there’s nothing I can do about it.