Parker's Promise

Darrell and I are finally learning enough to know some of the terms to research to learn more about Parker. Remember how I said this was rare? Apparently there are about 50 reported cases is the WORLD. No wonder so few doctors have heard about it.

Today was incredibly helpful. At first I was worried it might be a wasted day away from home because I only had 1 appt with the endocrinologist. But she was totally worth it! (Way more informative than the other one I saw who pretty much said "it was neurological and not her problem. See you in a year." I thought "no, actually, you probably won't.")

I will definitely have the Mayo endocrinologist follow us. She asked what I knew about the pituitary gland and then proceeded to draw out (and give me) a detailed diagram of each hormone the pituitary gland controls or releases, what each hormone does, and what to look for if it is not functioning properly. Right now all of his hormone levels are spot on, but that could easily change since his hypothalamus is disregulating. There is so much I could worry about with this little guy. It was so helpful for her to talk me through what I need to worry about, what I don't, what to watch for, and when to bring him in. Wow. Knowledge is so incredibly helpful and powerful.

We had cancelled the Ketogenic dietician appt yesterday since he is no longer on the diet, but as I am learning more, I asked to talk to a dietician today and the endo got me set up right after our appt. One thing the hypothalamus regulates is appetite and it tells you when you are satiated. Parker will eat and eat unless we stop giving him food. He puts everything in his mouth (food or not) and his need for oral stimulation and chewing is huge. I had noticed he would never let us know when he was done, so we've been limiting intake (which is hard to do as a mom when it is the one thing that gives him so much joy,) but he had started gaining some weight a few months ago and we were concerned. I'm glad we realized this early on.

The dietician was wonderful. I told her "I've managed to feed and raise three kids just fine, I don't know why this one's being so tricky," but she said this one is totally different. Both her and the endo emphasized that we will need to be his appetite.  She calculated his caloric intake for meals and snacks and helped me know easy ways to estimate his portion sizes. So helpful. I love to have tools in my belt and knowledge to move forward. Apparently you base the portion off his own fist size. Cool.

We do pretty well with him, but the main time we get into trouble is if Darrell has been feeding him, then I get home and he is asking for more food so then I feed him, then someone else comes along and he is asking for more food... My main plan is to portion out his plate when the meal starts, then give him small amounts at a time, that way I can keep track since I have no idea how I might possibly get distracted feeding all the rest of my family let alone myself. Whew. Big sigh. We can do this.

Then they got him in for an x-ray right after to get a base line for his growth plates so we know if he starts growing too fast. They really are quite efficient.

Afterwards Parker and I escaped the hospital and went for a walk to a great little Thai place a few blocks away. We thoroughly enjoyed our date. What a sweet little guy.