Today was our last day of appointments. Clark had his lower GI X-ray and it went really well. He had to drink barium but they mixed it with grape Kool-Aid so he took it much better than on Tuesday. There also was a person who spent the entire time distracting him with toys and that helped a lot. His lower GI X-ray came back with no apparent issues, which was not a surprise but still a relief.
After his X-ray we met with the GI specialist again. She went over his blood test results with us and talked a bit about how we felt about the appointments we had already had. His blood tests came back showing that he is getting adequate nutrition now and that is good. However, his thyroid has some issues. His thyroid level itself is in the normal range, but the number that shows how hard his thyroid is working to maintain that level (I don’t remember the technical terms) is high. It should be around 6 and it is at 12. So there seems to be an issue with that. Nic’s mom actually was diagnosed with thyroid issues around the age of 6 because she was so small, so that is rather interesting.
As of right now there is nothing more to do. They wanted us to see the endocrine specialist but we could not get in until Monday so we will wait until we come back in April. We will be doing a follow up with the neurologist to make sure that Clark has continued normal development and we will be meeting with a speech pathologist to see if they can help him with figuring out how to eat. We will be trying to get him connected with a speech pathologist at home too.
I feel relieved that neurologically he seems fine. I am interested in the idea of Oro Motor Apraxia because it seems to fit his eating issues quite well and hopefully we can get some help from a speech pathologist so that he will be able to figure out how to eat. I am discouraged that there seems to be no good answer for his eating. The GI specialist recommended that we continue the formula although we can mix it a little thicker so that he is getting more calories. I am tired of making bottles, but even more tired of getting up a couple of times a night to feed him. At least he seems to be getting enough nutrition right now so we will obviously continue what we are doing.
Clark’s thyroid levels will be tested again in two weeks, but we will do that in Fargo and the results will be sent to Mayo. If his levels are still off we will look into that further. Otherwise we will continue working on his muscle tone and eating issues with therapy at home.
We are tired but the kids did really well. Clark missed naps and rarely ate but he was surprisingly good. Smith was an absolute peach and we are so grateful for his easygoing personality. We are going to go home tomorrow and I am looking forward to seeing Remy and sleeping in my own bed. Thank you for all of the prayers!