Half of a diagnosis

Well, after doing some research and reading into the part diagnosis that we were given for Maxwell I need a break. I am at the point where I do not have the energy to cry but want to so badly.

The geneticist called yesterday and wanted to see us on Wed. Since I leave with the kids to Canada that day they made time for me to come in today. Anyhow, they say everything points to Lysosomal Storage Disease. This also means that there are about 40 or so different diseases within and they need to isolate which one to give him a more proper diagnosis and know exactly what is going on and what to do for him. This also means that it is progressive, despite which one it is. I have read the descriptions for about 40 of these and few have anything to help medically. For some the life expectancy is very short, I hope that is not the case, but.....

I worry my trip will be too long. I worry something will go wrong....

At this point I hope for the best and will enjoy Maxwell as much as possible and try not regret anything or try to figure out if I could have done something different to have helped him more...