Week Full of Doctor Visits

I have to be honest, the past few weeks have been insane! I don't know if I am coming or going.. First, I went back to work. Now I'm only working about 6 hours a week but it is split between 3 evenings so I feel like I'm running a lot and am gone a lot. I leave when Jimmy gets home from work and get home after the boys have gone to bed, or at least when Landon is getting ready to go to bed. I really like it, but its certainly an adjustment. Landon was sick at the beginning of this month and both boys have had colds off and on all throughout the month. The runny noses, sneezing and coughing also brings about interrupted sleep schedules and grumpy little boys, Luckily, both seem to be on the road to recovery. On Wednesday of last week, Landon had an appointment with a new ophthamologist, eye specialist. The doctor he was seeing previously, referred him to the chief of the division at Children's Hospital once he found crystals in his eyes. I was not looking forward to this appointment. For one, I knew that we would be told to give the eye drops more often. I was only giving him the drops once or twice a day. Many people don't start the eye drops until the crystals cause discomfort. We started them early so I guess, in the back of my mind, I excused myself from pushing it too much and told myself that whatever we did, as far as the drops, was going to be okay. I told myself that, but didn't necessarily believe it. I also was not excited about the appointment because I'm always a bit skeptical of what a physician advises when he/she does not know Cystinosis. It's just part of having a child with a rare disease, I think. Anyway, imagine my surprise when I was told by this new opthamologist that he has treated 60 or more patients with Cystinosis and that he actually works on a study in which they are investigating a gel that can be used twice a day in place of eye drops. He said that they believe it works and that it is just about ready for clinical trial, or a research study in which human subjects are used as participants. Besides knowing his stuff, he was such a fun guy and Landon really liked him. Landon actually even gave him a hug when he asked at the end of the appointment. We learned that Landon does still have crystals in his eyes. The doctor recommended drops 4 times a day (totally feasible but I need to make it a habit). He was very surprised, and very pleased, to hear that Landon is not sensitive to light and does not seem to have discomfort or pain in his eyes. He feels like we have a pretty good handle on it right now and that as long as we use the drops, it should stay that way. Thursday of last week, I took both boys to Children's so that Landon could get his routine blood work. This blood draw was the first since he stopped taking Procysbi and went back to Cystagon. Blood is absolutely, positively, Landon's least favorite thing to do. It never seems to get easier. Jordan sat in the stroller, as I was holding my big boy, and smiled at him the whole time. I like to think that he was trying to comfort him and figure out what was going on and not that he was being mean to his big brother. I do think that's true. My boys really do love each other. Friday of last week, we ventured back to the hospital for Landon's nephrology appointment. We usually do not have so much going on at once but I didn't realize that I scheduled the appointments in the same week and I held off on blood work because he was sick. The appointment with Dr. Nguyen went very well. His electrolytes are all in a normal range and we had the opportunity to talk, at length, about what that all means.. What the numbers tell us about his bone health, kidney health, what is coming out in his urine etc.. Landon is actually really healthy despite having this disease and having to take so much medicine. His health is drastically better since he was diagnosed over two years ago. One other really good thing is that despite Landon growing taller and gaining weight, we have not had to increase the amount of medicine he takes. So essentially, he is self weaning. We do not yet know his cystine level and the numbers that are indicators of kidney functioning but should know all of this within the next couple of weeks. Oh, and I have to tell you that my big boy has not hit the 30 percentile in height. It took so long to get him back on the growth chart, but he is there now! Last, but certainly not least, this week is the 3rd Annual Lots of Love for Landon Halloween Fundraiser. We are expecting about 270 people. We have some awesome Chinese Auction items, great door prizes and we are really excited about Saturday.

Okay, you win!

Sometimes as we move through life in our bubble of all is perfect in our world, Cystinosis gives us a kick, well maybe not a kick but more of a tap, as if to say "Hey! I'm here. Don't forget about me!" Landon has great days and seems to feel well most of the time. So it allows me to forget about precautions that we have to take. Some with Cystinosis do not sweat which results in overheating easily. Landon's nephrologist has asked me if I notice whether or not he sweats. My response is that I really haven't noticed but that he seems to handle the heat well. He does for the most part but we have to be very observant of when he is bit drinking a lot and when he is becoming overheated. I am realizing that he probably does not sweat and I really hoped that would not be the case. Today we went to Seven Springs for the Autumn Festival this afternoon on this almost 80 degree day. The sun was bright and there wasn't much of a breeze. Not long after we began walking around, with the boys in the stroller, Landon seemed tired and moody. He didn't get a nap so I didn't think much of it. I grew a bit concerned when he didn't want to eat and then had to be coaxed into drinking his water. My sister noticed at one point that he felt warm so took him inside and stood under a fan. He seemed to perk up. Jimmy and I walked both boys around soon after hoping that they would fall asleep for a bit- they didn't. Landon seemed ok but tired. We left around 4 and drove home. He fell asleep for a little while but when we got about 30 minutes from home he started to cry. Before we knew it, he threw up.. We pulled over on the highway and quickly changed him. When we got home he was crying over everything and didn't want to eat dinner. I asked him to use the potty and he cried that he didn't have to go. By this point, he hadn't gone in 2 hours which is unusual. We decided to try to get water in him through his G tube. He threw up.. Jimmy and I jumped into problem solving mode- getting him into the bath tub and cleaning up his vomit. We got Jordan ready and into bed and gave Landon cuddles on the couch. We were able to get Tylenol and Pedialyte in him so we are hoping to keep him hydrated throughout the night. Lesson learned for this mommy.. We have to be extra aware and extra cautious when we go on these outings and expose him to the heat. Cystinosis will not stop us but we have to allow it to slow us down sometimes, just a tiny bit!