I'm home

I am glad that I went, it was well worth it. I met alot of great people, some from one of the websites I frequent and many new friends. It was such a relaxing and friendly environment to be part of. For the first time in a long time, I felt like I belonged somewhere. Since having the boys it can be really difficult to feel normal around parents of normal kids. No offense to those parents but you just feel like you don't quite fit in anywhere. But being around all of these people who share the same horrendous disease was comforting.

I was so amazed by all the different stories. You had many adults affected, parents of one or more kids affected, grandparents, nurses, and caregivers and parents who lost children to this disease. I flocked to the parents who had kids with similar severity as the boys. This disease presents in SO many different ways. You have some kids that were completely healthy until they got a fever or seizures or some incident that then progressed the child to lose all of their skills. Some were able to be brought back but medications and others not. You have parents affected as well as their kids which make it extremely difficult for them to care for themselves and children. I connected with a few moms that lost children and I was drawn to them. I think I was looking for validation that I will be able to get out of bed the day it happens to me. The sad thing is many of our children will die from this illness but you can never predict when or how.
Still so little is known about mito but it was great to see so my drs. and researcher so passionate about learning more to help people affected with it.

This may sound depressing but it was far from it. I had a great time and managed to be the star of the evening. Now you all know I am not bashful. So of course I volunteered to be hypnotized.
Need I say more. LOL. Many people thought I was hired to play a role. Yes, I did this in front of 500 people. I promise I was somewhat restraint. Just a great time.

A few things I did learn which is kinda upsetting. But many drs. confirmed that it was not possible for the boys to have PDH (which is a type of mito) based on their skin fibroblasts. We know they have mito but no idea of which time. Many things have been ruled out but nothing found. So this means that we are much further from finding a mutation than I thought. I have to make a decision and get my act together for picking a dr. that I feel will really help dig for the truth. This would require me to get ALL of the boys medical records together and some labs on me, rick and Janessa. I also talked to a wonderful neurologist (I wish he was closer to me) but he talked alot of neurological involuntary movements which Avery has tons of that are not seizures, he said it is dystonia which we knew but that it can be very painful and that he would treat it. They actually use meds for MS patients, so I will email my mito dr. about that.

A few other notes, after a long, great weekend, I started off the morning at 4:30am forgetting my cellphone in Indy (luckily Nena was still there and will mail it to me). Then my flight was cancelled so I had to get redirected to Boston, however my car was in New Hampshire. Rick had to pick me up in boston and he had something booked all day, then I had to drive to NH to get my car. So needless to say, I am EXHAUSTED. But all well worth it.

Can I just say, the Canadian ladies ROCKED the house. See you ladies soon which includes you too Debbie.


The sad th