I am still reeling from the conference and have been within my own thoughts lately. It was actually really good not to have my cellphone for a few days. No calls, just me. You just don't realize how much we are attached to it once you don't have it. What did we do without them. I swear I am going to take a cell break every once in awhile. Hopefully my car doesn't break down. LOL

Anyway as I was saying. You or at least me cannot help to think of mortality after the conference. I just saw so many kids or heard parents that have kids that are mildly affected, then there are my boys. It is said that the more symptomatic you are at a young age the worse the prognosis. Sounds like my boys. Sure, anything can happen and it is in God's hands, yadda, yadda, yadda. Still does not make things any easier knowing that I had three kids and probably by their teenage yrs. I may only be left with one. It is the reality, my Reality. I don't often think about death but it tends to creep up at times. I keep on going over those words with the women that lost her son "were you able to get up the next day". Will I? I am sure I will but..............
I guess like a friend of mine who I went to the conference with, having kids so profoundly affected with this fatal disease is really hard to see kids mildly affected. Now I would not wish these parents to have sicker kids but it is just really hard to see.

Don't know if I said it the other day but Avery has basically saved Janessa's future. When Isaiah was dx with mito, it was assumed he had PDH and no skin biopsy was done. Well when Avery was born, rather than doing a muscle biopsy on him we opted for sending off his foreskin from his circumcision. This is when there was alot of question about the PDH dx. So they ran a skin test on Isaiah which also turned out negative. Apparently it is not possible to have negative skin biopsies and PDH. So we would have not had a clue in terms of searching for a mutation if my little man was not here. Told you he was sooo meant to be here. Hopefully b/c of Avery we will be able to find a mutation for Janessa so she can have healthy kids. So until we find it, me, Rick or janessa can be tested b/c it is like finding a needle in a haystack. KWIM? I am confident that we will find this mutation in the future.

Avery had a rough day today. Lots of pain and tone issues. Some days are better than others.