9-12-16 -(Beth)

childrenshospitalmain

Today we went to Rebecca’s doctors appointment at Children’s Hospital where we were supposed to get the results from the genetic testing, which we in a round-about way found out on Friday.  We brought a binder with us with all of the questions we had.  We were told that we should have hope that there may be a cure found, but that we should also plan for Rebecca to eventually be blind.  We were told that Rebecca’s physical therapy appointments should be increased from once a week to twice a week, and that we may want to add vestibular therapy as well.  I’m still in hiding, I feel like I can’t face the world.  Reagan has a softball game on Friday night and I honestly don’t want to go.  I’m not ready to talk to people.  I just want to stay home with my family.  We explained to Reagan tonight that we found out Rebecca has balance issues, and that over time she may have problems with her eyesight.  We didn’t tell her how bad it may get, but we had to explain to her why we have been upset all weekend.

2 comments

  1. You are such great parents… I am in awe of your strength and know you don’t think you can do it, but you have already proven you can. If I can be of any help, even if you just need an ear to bend. Please, please! Call me. Love you all. Deb

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  2. We Love you all so much! You have tremendous strength and Rebecca is so fortunate to have you (Beth, Jake, Reagan) by her side to fight this battle. We are here if you need ANYTHING at all! Even if you need us to stand on rooftops and scream to the whole world how much “USHER SYNDROM SUCKS” we’re in. ❤❤❤❤

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