Disease progressing

Today was another follow up appointment with Stanford. Wanted to keep everoyne posted with what was going on. Dylan’s doctor told us that "his disease is progressing, but there is nothing too serious going on". Basically it means that we will continue to watch him closely.

What we will be watching:

- ammonia levels/encephalopathy: whether his symptoms suggest high ammonia even without the numbers being that high, or high ammonia even without symptoms. These are both signs of decreasing liver function.

- Platelet levels: Due to what Dylan has his spleen is very large. As his spleen gets larger it collects platelets and other blood cells almost like a net. This can lead to bleeding disorders.

- Portal hypertension: With the scar tissue building up, Dylan has an increased risk to "bleed out" due to back pressure.

- Other liver enzymes and tests elevated: Dylan has lab draws every month to monitor these. So far so good for Dylan.

- weight gain and growth: They way they put it for us is that "sick" kids don’t grow. The theroy is that if he continues to stay in his growth curve we are doing good. Again this is monitored every month.

Thanks to everyone for all the support. We will continue to keep you posted. 

-Noah