Toooo Busy!

So sorry I have not been up to date! The family went to Disney World two weeks ago with my parents and my brother's family, and we all had a blast! Tyler even went up and hugged all the characters (if you didn't hear, he ended up on his stomach crying when we went to see Santa...not good). The weather was amazing, and the crowds were very small, so we couldn't ask for a better trip. I hope to have a link to some pictures here soon....once I figure out how to do that:)

Ava is trugging along and doing fantastic. We go for a hearing test on Monday which I believe is just protocol. That is one thing that I am really not worried about as she reacts to people's voices, sounds and her brother's lovely temper tantrums. I am looking to possibly get a 2nd opinion on her vision because I am just not sure I can wait a year to find out what all is going on. The ophthalmologist that we have been seeing here at MUSC says that he doesn't need to see her for a year or so to do a follow up. That may be the case, but I just have a hard time with that. So, I figure someone else can either confirm that and ease my mind or tell me otherwise. It can't hurt, right?

I have met many people online many of them with truly amazing stories. This one gentleman from Canada has lived with hydrocephalus since he was born...48 years now...WOW. His last shunt that he had placed was 24 years ago, and it is still going strong! While that gives me great hope, he also elaborates on the headaches and such that accompany this condition. He sent me a scale that another man made up, and this guy says that he is right on target. It is a scale of 1 to 10, and I think on level 4 or so he is getting sick from the pain. This tugs at my heart that my baby girl may and will likely experience this. I know it could be much, much worse, but no one wants to hear those kind of stories. But he also has very positive and fun facts that he shares like people with hydrocephalus are walking barometers. Yes, the pressure from the atmosphere affects people with hydrocephalus. I have heard that many get headaches when a front is coming. Kinda funny in its own little way. Maybe Ava can grow up and be the first accurate weather person!
1 Response
  1. Anonymous Says:

    So funny! Ava would be a beautiful weather gal...and being accurate would be a TREAT! We love her so much, and will be here for her-no matter what challenges she may face. We really enjoyed our weekend with y'all last week, and hope to do it again real soon!
    Love ,