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
Annie, you and Avery continue to be in my thoughts. I hope you can use some of the positivity that others around you are sharing to keep yourself strong and empower Avery through this long difficult time. I will gladly share any with you two! If you need Anything please gimme a shout!
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