Hard Work

Landon was supposed to go to see his Nephrologist this past Friday but the appointment had to be rescheduled because she had a family emergency. She was, however, kind enough to call me to check in. I was happy to report that Landon continues to do well. She commented that his electrolytes look wonderful. His kidney function is still at a wonderful place, his bicarbonate (which promotes growth) looks great... His phosphorus level was low again. The goal is to have this level at a 4. Three months ago, it was at a 3.4 which made us all very happy. When checked last week, it was 2.4. His doctor told me that even a small increase in weight, can affect how much medicine he needs to keep his phosphorus level where it needs to be. A deficiency in phosphorus affects bone growth. You may recall that Landon has Rickets. Often times, when you hear of Rickets, it is a result of a Vitamin D deficiency, but for Landon it is phosphorus. Now because Landon also has Fanconi Syndrome (kidneys pass substances through the body that should be distributed throughout the body), his body eliminates Phosphorus at a very quick rate. Not everyone with Fanconi Syndrome is affected in the same way.

We then began to talk a bit about his gross motor development. His Physical Therapist is very pleased with how well he is doing but I think things move a bit slower than was expected. I often wonder if Landon's hesitation with certain tasks is that he is a bit fearful and unsure of his ability and how much could be that his little legs really are kind of weak and maybe he experiences discomfort when trying to do certain things, as a result of the history of Phosphorus deficiency. Her response was similar to this.. "It may seem like Landon is behind his peers in a lot of ways and he may be. But, for a Cystinosis baby, Landon is off the charts." I felt a couple of ways about this- mostly I felt blessed that what we are doing for Landon is working- the meds, the feeds, therapy, school etc.. but I will admit that another part of me felt sad. It was a reminder that our little boy has to work that much harder to do what his peers can do.

We were at the gym a few weeks ago for PT and Landon was working with his therapist. I think they were working on stepping up onto a 2 inch high mat and I watched a child, probably around his age, step up and run across the mat and for a split second, I felt my eyes tear up. I guess I just want something to come easy for him.

I sometimes have to remind myself to change my thoughts. This was one of those times... Yes, Landon is going to have to work harder for some things but I hope that it gives him a sense of pride and accomplishment rather than resentment.. And we, he, is going to find something some day that comes so natural and is so easy for him. I just know it...