Here we are at the end of another month for The Book of Em, and I really can't believe that we're going to have an 18 month old in a few short weeks. A whole year and a half of having the cutest, most adorable, and sweet little girl in our home. We are so lucky. Our physical therapist called her a toddler a couple weeks ago and I found myself caught off guard asking, "Wait, what?! When did this happen?!" It's true, she's grown up right before our very eyes, and I think sometimes we get so caught up in the milestones and the things she is/is not doing, that we forget how quickly time is moving, and the sad thing is, we can't slow it down one little bit. There are officially no babies in my home right now.
Em has been doing so well with her eating recently. I know I've mentioned a thousand times how Em has struggled with eating, and I know I mentioned last month how our medical insurance denied her right to coverage for feeding therapy, but over the last month, things have progressed so much that she no longer needs therapy. The problem totally resolved itself and she's all good to go. We saw the gastroenterologist a couple weeks ago and I asked if he could write an appeal to our insurance company to get the therapy covered due to medical necessity and he said, "I could if it were medically necessary, but she's eating better than most of my patients right now, so I kind of can't." We're all pretty stoked about not having to add another doctor appointment/therapy to our list of things to do on a regular basis.
One thing that We have been concerned with still is Em eating enough foods. For those of you who don't know, Em is in the 100th percentile for height and isn't showing signs of slowing down anytime soon. When we brought her to GI they weighed her, and for the first time in six months, she was finally over 20lbs and we were THRILLED. But then six seconds later they measured her and the 1.5lb gain that we were celebrating went slightly out the window when we learned she had grown another inch and a half.
The main problem that Em has is low muscle tone, hence the weekly physical therapy and the lack of milestones. But the low muscle tone also translates to her abdominal muscles and her GI system. Basically because of the low-tone, Em has a slow moving stomach which means food doesn't leave her stomach as fast as it could, so she doesn't get the feeling of being hungry as fast as she should, so she doesn't want to eat as much as a person with a normal moving stomach would, and therefore there is the debate with whether or not her body is getting the right amount of nutrients that it should.
Obviously the fact that she is growing like a weed is a good sign, but she is pretty thin, and it's obviously concerning as a mother to have your child fit in 24 month pants for the length, but 9 or 12 month sized pants for the waist.
So this leads us to our next medical waiting game. We've gone through the process of tracking everything Em eats for three days straight, and it's been sent off to a pediatric dietitian and she will tell us whether or not she thinks Em is getting enough nutrients in a day, or whether or not we need to start supplementing her food with boost, calorie fillers, etc... We're also in the process of getting signed up for Katie Beckett which is a medicare based program here in Georgia that covers medical expenses for special needs children, and you can't be declined base on income. You guys... I'm a special needs parent. It's kind of real.
We'll be spending our morning at the ophthalmologist getting our yearly checkup for Em's "unhealthy" optic nerves that were supposed to leave her blind... spoiler alert: she see's fine. Also if you notice that Jay looks cross-eyed in 99% of his pictures, we're getting that checked out too, but it's not a true cross-eye, he has prominent epicanthal folds... which I'll let you google because it's 6am and I'm hungry and want breakfast. But no, he isn't Asian, and no he doesn't have down syndrome or any other "syndrome", he's a normal, healthy, smart, white, slightly Asian looking little boy who is at high risk for being cross-eyed, which we're looking to get addressed today. We'll obviously keep you posted.