Well, we had our 4 doctor's visits this week.. Landon did well, but gets very upset any time a doctor or nurse comes near him. I just know that he relives his hospital visit when we go to these appointments. Before that, he used to love getting weighed (because it meant that he could be naked!) and seemed unphased.. Not so much anymore. It may just be that he's getting older but I think that he remembers too much. However, he does smile and is pleasant, as long as they stay out of his personal space!
We learned this week that Landon's levels are all within normal range except phosphorus. We battled keeping his phosphorus at a 4 (not sure of the unit) while in the hospital and when they checked this week, it was a 1.9. The nephrologist asked if we could give him the Neutra Phos at night when he gets his Cystagon as well. We started doing that on Wednesday so hopefully it'll make a difference. I also have transitioned from putting all of his meds (except Prevacid) in the bag with his formula (so easy!) to putting it directly into the G tube. I knew that I needed to start doing this but was so anxious because it seemed to make the most sense to give him the meds right before he is hooked up and gets a feed but I was afraid to give it to him then because he wouldn't have a full belly. The nephrologist assured me that his belly is not empty from one feed to another so he shouldn't have a hard time. She was right! He has not (knock on wood!). It was certainly a sight to see me trying to put the meds in the tube. I would put it in only to have it squirt back at me. All of you nurses make this all look so easy!! Anyway, I was incredibly frustrated so Jimmy got on You Tube and watched several video demonstrations. Then, ta da!, he realized that I was not clamping the tube right after I placed the medicine in so it was shooting back up at me. It also helps to hold the tube upright so that the medicine goes down rather than holding it horizontally. I administered his bed time feeds by myself and it went well. Except for Landon trying to throw the syringes on the floor *sigh*... Haha..
One other tid bit to mention, we learned at his nephrology appointment that he does in fact have rickets. This is not surprising and, from what I understand, not all that uncommon for those with Cystinosis. Usually rickets is a result of a Vitamin D deficiency, but in Landon's case, it is a result of a phosphorus deficiency. Fortunately, he is being treated for this deficiency so it will not cause any lasting problems. He is not bow-legged because he's not yet walking so is not putting enough pressure on his legs to create a problem.
I have asked over and over again if he could not be walking yet because of the things that are going on with his body. No one has confirmed this but at this point, I certainly believe this to be true. Now, I am certainly not a mom who panics because her kid isn't doing what the other kids are doing, but I do want to know in what way this is affecting him. We are not stressing and pushing him to walk. We know that he will when his little body is ready. And besides, he is fast enough on all fours!!
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