I think I can, I think I can....

I know I have left everyone on pins and needles this week and I am so sorry. I'm going to be completely honest. I am a mess. I want to keep everyone in the loop though so I'll apologize now if this isn't written in my usual tone...

Since my last post in May and the one I just threw in a few things have changed. One; Averies eyes are getting worse. There are now significant changes to her Retina. This came as a shock to me and probably the main reason I haven't been doing as well as I once was. So the ERG I originally thought we would have in July ended up getting done in September. It was pushed back for several reasons. One Dr. Brooks wanted to bring in a third specialist Dr. Zein; two and the main reason was because the consensus between the doctors was it was a test that was just going to be done to cover all bases they didn't think the Retina was the cause but getting it done and having it in the chart was a good idea. Shocker 1. It came back abnormal. It was abnormal in the sense that Dr.Zein couldn't completely interpret it without researching it further. Which meant we need to follow up with him. This follow up was what we were doing last week 10/12/11.
As upset and down as I am right now I know I will get through this and I know Averie is at the right place (NIH and Childrens) and I know the team of doctors are doing the
very best they can for her.

Dr. Zein and Dr. Brooks confirmed that Averie does have both
a retinal diseas as well as optic nerve atrophy. They feel/fear the vision loss will continue but have no idea how much or for how long. They think we have actually caught this very early. So early that not all of the "symptoms"
have presented; which might explain why Averie hasn't fit
into specific categories. Averie is currently enrolled in
iGene; which is set up to test her blood that has already
been given anytime anywhere. This is huge and I'm not doing it justice right now. Maybe I'll blog all about that in the future.
With this new information it's a bit of a waiting game now. We go back to NIH in Fedruary if we see anything manifest, if not we could go back as late as May. I know I need to stay positive and I will but right now it's hard and I guess I need some time.

Again thank you ALL for everything and please know I am so sorry for not writing sooner. Once I can wrap my head around things better I'll write more.

XOXO
~A

Nothing Grand about it...

Well I am late to update again... However, I did write this back on June 6th and never posted...SORRY . 

So we went to "Grand Rounds" and let me start by saying calling it grand was a tease. It was anything but GRAND. However, I am glad we went. We did get to meet the famous Dr. Brian Brooks from The National Eye Institute. I have been trying to get into see him for over a month with no luck, so it was a pleasent surprise meeting him, and we really liked him too so that was a plus. So Dr. Brooks is pretty much going to be taking over Averie's case. We will still stay in touch with Dr. Avery but for now it seems that Dr. Brooks will be running the show.  We see him in July for an ERG, from what I have gathered this is like an EKG of the eye. Little electrodes will be placed on Averie's eye and wrist, and then a series of lights will be flashed and this will monitor what she is seeing/registering. Averie will be given a mild sedative to help her forget the process. My sister Mollie (Ma2 as Averie calls her) has had this done and remembers vaguely of something being put on her writs but doesn't remember anything on her eye, so that makes me feel much better about the whole procedure. I think...