Sorry I have been MIA. Holidays came and got really busy. After the holidays a friend came to me wanting to start fundraising for us for Tyler's medical bills and stuff. So we started stuff and I have been busy with that. After starting an online fundraising page, I was contacted by an organization who trains service dogs and they wanted to train a seizure response dog for Tyler and we got a great donation towards it so we decided to take advantage of teh opportunity. So we have been working hard on fundraising for it. They have a dog for Tyler and he name is Zoey. We were supposed to get her in October but her training is going so well, we may be able to get her early as long as we pay her off asap. So that is the goal now. And then in a month or 2 we are supposed to be flying to Cincinnati for specialized testing for Tyler.
We also saw a genetecist in December. We know our dr's have been suspecting a mitochondrial disease being his underlying diagnosis and it would explain all of his health issues. Well, the genetcists at our hospital seem to refuse to speak about mito. Well, at our appointment, all she talked about was mito. I coudln't get any other disease possibilities out of her and she staretd us on the meds used for mito. We should be getting our first set of DNA results in this next week and the second set in a couple weeks from now. Very nervous but the drs decided they will treat Tyler as a mito patient until they can prove otherwise, so I dunno. I have been happier on one side because we seem to have an answer which helps a lot with his care and treatment decisions, but crying because the disease is horrible and at the end of teh day, will most likely kill him. Ugh.
So that is what I have been up to. I have missed you all here.