No news is good news 2/9/2008
I had been keeping quiet about this, but I’m ready to post about it and explain what we know. We had an appointment today for Sophie to see a retinal specialist because the pediatric opthalmalogist she saw a few weeks ago had observed some abnormal cells in the pigments of her retina. When he said this we feared she might have retinitis pigmentosa, and we hoped the specialist today could confirm or deny the likelihood of this. For those who don’t know, retinitis pigmentosa is a degenerative vision disorder that leads eventually to blindness though, fortunately, rather slowly. Retinitis Pigmentosa when partnered with deafness is called Usher Syndrome and includes poor balance as a primary symptom. Since Sophie has terrible problems with balance and has profound deafness in both ears, RP would have sealed the deal and made Usher Syndrome a frighteningly appropriate label for our sweet child. Usher Syndrome is the disease responsible for a majority of cases of deaf-blindness.
It is still possible she could develop RP or that she does have Ushers’ but the retinal specialist said the abnormalities did not appear to be a clear case of RP at this time. He said we’ll need to monitor her for any changes, but for now, he felt we should not assume she has it. Fine by me! Thank you God for “no news” at the doctor’s office today.
Oh wow. I am stunned. I will pray for your sweet Sophie.
Whew. Unbelievable. I’m so glad it’s good news. We’ll pray it stays that way.