Happy Easter

Ellie had an appointment with her endocrinologist last week. It went well, for the most part. She weighs almost 19lbs and is 2' 1" tall. That puts her weight in the 50th percentile and her height is right at or below the 10th percentile. Now here's the part where you need to keep up... SOD causes hormone deficiencies in the pituitary gland. There are eight major hormones. ADH is one, and that one controls the sodium levels in her body which is why we watch them and that causes her DI. Others include, but are not limited to, Cortisol (your ability to deal with stress, your fight or flight hormone), another is Thyroid (more to come on this), and IGF 1 (growth hormone, short stature syndrome, just being a very short person). These are the ones I'm going to talk about, but there are others that are important just not on our list at the moment.

Last week she got her thyroid and growth hormone (IGF 1) and sodium checked. Her sodium was perfect but the others are hovering just barely above normal range. If she develops a thyroid problem that could reek havoc on her brain development. SOD can cause mental retardation and there is research that links hypothyroidism to mental retardation (see link below to read more about this). Our endocrin has been very concerned and watching her thyroid since we left the NICU. Her cortisol levels haven't been checked since she was in the NICU so we need to make sure that's not a cause to the other low levels. Checking this hormone requires them to give her the medicine and see how her body reacts by taking scheduled blood draws. We got lucky and we go to Pensacola one day this week to have this test done, and we only have to wait until after lunch to find out the results. Ok, still keeping up?

If her cortisol is normal, pretty confident it will be, then we will start her on thyroid medicine. It's safer to have her on the high side of the hormone than the low. Meanwhile, doctor is submitting documents to the insurance company to see if they'll approve it, if not then she'll have to go through the testing and that takes 3 hours and 6 blood draws. It has to have insurance approval since once you start you have to take it, pretty much, for the rest of your life. I've heard that she'll be on the meds for the rest of her life but I've also heard that she can come off and I saw on a YouTube video that one person had to go back on once they came off. So there's no real definitive answer on this. Hopefully they'll go ahead and approve it, Tricare isn't that bad but the base clinic sucks. No offense Dr. K.Nation, you're good ;)

As for her Easter, well she's been a cranky baby this weekend and has been running a low-grade fever and is refusing solid foods (her mouth snaps shut when the spoon goes to her mouth). She's still drinking but I'm not sure if it's just teething or she has a new ear infection. She only seems to be happy with her sippy cup in her mouth or sleeping. Below is a picture of her Easter outfit. We went to church but had to leave before the service because she started crying. So we came home and then later went over to Jade's momma's (Kim) house for an Easter egg hunt. Kim had ordered eggs that make noise and one that says, "I'm over here." They're super cute and Ellie really liked them. She giggled at them because they bark (it's a safe/cute bark, not a big dog bark). We came home and she refused more teething toy options and then went to sleep. Hopefully we'll get in to see the pediatrician tomorrow. Hope you all had a wonderful Easter and your week is wonderful. I'll try to update once we're done with Pensacola but it may have to wait until the weekend.

SOD and Throid:  http://www.nmsbvi.k12.nm.us/downloads/PDFs-ForWeb-InfantToddlerProgram-FromECPCindyFaris-Late5.09/PediatricsJournal_ONHproposedStudyArticle1.pdf
and
http://www.soditalia.it/attachments/052_cortical_developement.pdf