Our Healthy Boy

Today we had our visit with the Nephrology department at Children's Hospital. We were at the hospital just a few days ago for blood work. For Landon, at this point, blood work is the worst part of Cystinosis. He hates it. I'm always honest with him about where we are going. I don't jump to tell him but when he asks where we are going, I tell him. I will always be honest with him and I say I and not we, in referring to Jimmy, because I can only speak for myself and I'm the primary person who handles doctor and hospital visits since I'm home with the boys. Half of the 30 minute car ride to the hospital was filled with tears. Landon and I talk a lot about feelings and how to cope- his mom is a therapist. We talk openly about being afraid and that it's okay to feel that way and we talk about what exactly happens when you get blood work done (or shots). I told him that I don't like to look when they put the needle in my arm and that's what he tried this time. A big part of me wants to do whatever I can to make it easier for him but then there is a part of me that just wants to accept that it's a sucky part of Cystinosis (or life) and allow him to sit with those feelings. We don't always have to fix it and make it better. Sometimes it just is... He asked me to tell the phlebotomist (he calls all medical people doctors) to please be very gentle with him. I assured him I would but he walked in when they called his name and told the two ladies in there himself. The phlebotomist promised and she certainly did her best. He cried, I gave him lots of hugs and told him that he was very brave. The secretary asked him, as we left, if she was gentle. Landon responded "yes, she was gentle. It just hurt a little bit." When I told Landon that we were going to the hospital to see the doctor today, he quickly asked if he needed a shot. I promised him that he would not need a shot. One time I promised this and we were told at the appointment that we could get our blood work done after the appointment. We went back another day because I just could not break a promise if I could help it. Anyway, Landon confidently walked past the lab and announced to two employees standing in front of the door, "I don't need a shot today." I also have to tell you that he had a hat shaped like a monkey that he wore. He told me in the car that he would wear his hat in the hospital because "it will make people laugh and they will be happy." We are so blessed with such a special kid. That comment represents who Landon is so well. So the appointment.. I have to say that I actually really enjoy going to Landon's nephrology appointments. We just adore his nephrologist. She was introduced to us from the very day we entered the hospital and Landon was diagnosed 3 1/2 years ago. She was one of the doctors who entered the room and confirmed his diagnosis and the one who called me to tell me that Jordan does not have it. She is currently on maternity leave so we saw Dr. Moritz who knows Cystinosis well and has treated patients for many years. He is a great guy and I always enjoy meeting with him. They provided me with a copy of Landon's lab results and Dr. Moritz went line by line discussing each number. With the exception of Landon's thyroid number (which was a bit high) everything fell in the normal range (normal for any 4 year old). This has been the trend for the last couple of years which is something that makes us incredibly happy. As I spoke longer with Dr. Moritz, I realized how well Landon really is doing. The expectation is that as Landon gets taller and gains weight, his medicine will need adjusted, right? Makes sense. There are three drugs that he takes to replace what he loses in his urine (potassim, phosphorus etc). He takes two drugs to help with belly issues (the meds are tough on his stomach). Cystagon which keeps his cystine level at a safe level to slow down the destruction of his body's cells. He takes a drug for hypothyroidism and one to promote bone health. The topic of discussion this afternoon was the drugs that replace what he loses in his urine. His electrolytes were all within a normal range which is great but this nephrology team is always thinking ahead and taking the extra step so we are cutting back on two out of the three drugs that replace his electrolytes and are getting rid of one altogether. This is great news because, as Dr. Mortiz stated, it means that he is improving. He doesn't require the extent of medical intervention that he once did. We struggled for a long time to get Landon's phosphorus level in the 4's; today it was 5.7. The doctor examined him- no sign of Rickets in his ribs and when Dr. Mortiz straightened his arms out he was surprised to see them actually bend all the way to the opposite direction and that he is really flexible. We plan to have a couple of tests done, an ultrasound and bone density test, to confirm his bone health and that his bladder is healthy. All in all, it was a wonderful appointment and a reminder of how blessed we are that our boy is doing so well.