Doctor Appointments

Landon had his weight check with Brooke, his pediatrician today. I was excited not only to find out his weight, but for Brooke to see that he is walking! I didn't want to get my hopes up about a gain, but I've noticed that his diapers are a bit more snug now so I thought that maybe he has gained a bit. And yes, he did! Landon gained 5 ounces in one month. He is slowly creeping up. Hopefullly it won't be too much longer before he actually gets on the growth chart. And, we are getting closer and closer to that goal of reaching 20 pounds! He now weighs 18 pounds, 11 ounces. Just to put things into perspective, I played around with a Children's Growth Chart Percentiles Calculator. A 20 month old who is 22 pounds and is 31 inches tall would be in the 3rd percentile in weight and the 4th percentile in height- so would be pretty low on the growth chart. When checked at his 18 month appointment, he was 29 inches long. Now, he may be a little bit longer because some of his pants seem a little shorter on him. I have to admit that I just went into his room, while he's asleep, and tried to measure him. It didn't help that he had his knees tucked under him. I tried to measure him anyway and he was 25 inches- ok, so that didn't work. Yes, I know. Something is really wrong that I just went upstairs, got my measuring tape and risked waking my child so I could have an accurate measurement. Don't judge. So with all of that being said, he is not "too far" from being on the growth chart. Makes me happy. =0)

On another note, I received a call from one of the nurses in the Nephrology Clinic (aka the kidney specialists). She told me that Landon's doctor wanted her to help coordinate an appointment for Landon with Endocrine. She followed this by saying that his T4 and TSH (I think she said TSH) levels were elevated based on recent blood work that he had done. I asked her to explain but she just said that they are levels that the doctor wants to keep an eye on especially considering his renal (kidney) issues and that she wanted us to check in with Endocrine. Their first available appointment is Monday, Dec 19th. I told Jimmy what she said and we both attempted to shield the "oh no, what does this mean, what is wrong now" look on our faces. Jimmy asked me again what the levels that were elevated are called, as he walked out the door to go to work. Of course, we were both going to Google it. Google was only able to create more anxiety in both of us. Fortunately, I have been able to connect online to some wonderful people who have a lot of knowledge about Cystinosis. These levels have to do with the thyroid (you may or may not have known that). From what I have learned, it is common for individuals with Cystinosis to also have problems with their thyroid. Many in the Cystinosis Group quickly wrote back that they or their children have taken or currently take a medication to keep these levels in a normal range. Brooke was able to reassure me at the weight check today, that thyroid medication generally does not have any side effects like most of Landon's meds do. The tricky thing is to time it right. It must be taken on an empty stomach and cannot be taken at the same time as a lot of other kinds of medications. So, we'll find out more on Monday, but I'm prepared to add another med to the list. He's up to 8 now. But, if it helps Landon's body to function as it needs to then so be it. We're thankful for medicine, otherwise we'd have a very sick little boy on our hands.
I will update after our visit with Endocrine on Monday.