He's not sick...

Last night, I thought we were preparing to take a couple steps the wrong way. Landon seemed a little agitated after his nap. I blamed it on 2 year old mood swings. But then, as he was getting a feed, he vomited. It's hard to tell if Landon is sick or if it was a fluke belly issue. I took him to Jimmy's sister's house, as planned, and the two of us went off to Zumba while his uncle watched him until Jimmy got home. I came out of Zumba to find a missed phone call from Jimmy. Landon had a fever and wasn't acting right. The combination of Ibuprofen, a cool cloth and cuddles from Daddy seemed to do the trick. I came home to find a happy Landon. However, 1am greeted me with a feverish baby and a puddle of vomit on him and his area rug. I stopped his night time feed and prayed that this wouldn't turn into something bad. My prayer was answered when I woke in the morning to a fever free little boy! We were cautious in giving feeds- I slowed down the rate and gave him 2oz less. It worked! He tolerated his feeds and meds throughout the day so we went to his appointment with his Nephrologist as planned...

Landon's appointment with his Nephrologist is mostly positive but the beginning is always a struggle for our poor boy. He screams when the nurse tries to get his blood pressure, he continues as I undress him to get his height and weight, the calms down only to freak out when they place a bag around his penis to try to collect a urine sample. But, once we get through all of this, it's pretty smooth sailing. We have had the same nurse every time and the poor guy desperately tries to distract him and make it easier but it never seems to help.

His doctor came in with lots of positive news. She showed me his numbers from the lab work and reinforced what she had told me on the phone just days earlier. His electrolytes look beautiful and although his Phosphorus level was low, after increasing his meds, it was much better and in a good place. She said that even a small weight gain could affect his level.

She looked at his legs as he pranced around the room in a diaper and t-shirt. She felt his legs and arms and was pleased. She checked his ribs and said that there is no sign of Rickets in his ribs. She noticed a little bowing in his lower legs but nothing major. She mentioned the possibility of growth hormones (GH) but said that he is gaining and growing well on his own and that GH can exacerbate bow leggedness. Once his growth plateaus, it is something that we will want to consider.

We talked about his eyes. I have yet to notice any discomfort or light sensitivity that seems out of the ordinary. We gave an appointment with his Opthamogist on Monday. If he has any crystals then we will begin giving him eye drops. I have been told that many choose to start eye drops, not when crystals are present, but when there is discomfort. Landon's nephrologist wants to start as soon as crystals are found - not every waking hour, which is usually recommended, but 5 or so times a day. She said if we take care of the crystals while he is experiencing no, or little, discomfort, that the drops won't hurt when they are put in. This makes me extra nervous about Monday but it is what it is... I know the day is coming. I'm not looking forward to putting drops in his eyes but we are blessed that there is a way to save his eye sight and that he doesn't have to feel pain in his eyes.

We spoke a bit about the feeds, but this is something that will be discussed more with his GI doctor. Her guess is that the feeds will continue until we can communicate about food. We are limited now in his understanding and ability to communicate. One thing she said that I never thought about is that he actually is being weaned right now. He is bigger but his doctors are not increasing his feeds as we are meds. It's a good thing!

Another thing that I really appreciated was the feedback she gave. She reminded me of what she told us in the hospital... "do not treat him like he is sick." This statement runs through my head on a daily basis. She told me that the reason that Landon is thriving in this way is because we don't see or treat him as if he is sick. She said that we are entitled to rough patches but that our attitude is that he is a normal kid who has to take medicine- no big deal. It felt good to hear that. The last thing Jimmy and I want to do is handicap Landon. And we certainly don't want him to walk around feeling bad for himself. He is blessed in so many ways. That's the attitude we want him to show the world...