Hope you all have an amazing weekend! Just wanted to share this incredibly adorable video. This little guy has a rare disorder called Oculocutaneous Albinism which affects his vision. He just received his glasses for the first time and is finally getting a good look at his mama. Watch the perfect reaction!!
So today we were planning on being at Rady Children’s Hospital again to have some testing done on Jana. Unfortunately last week I got a call saying her apt needed to be canceled because they had her Medi-Cal info wrong and therefor couldn’t get the approval done. So now we need to wait at least another week for the approval then we can finally reschedule the tests. I am so frustrated with the issues that keep coming up with her having Medi-Cal. Yes, I’m grateful that she has the coverage, but I feel like we have to jump through hoops just to get things taken care of. Once she is legally “ours” she will be put on our insurance and hopefully these doctor apt will start to go a little smoothly. The only positive has been that the staff at Rady’s have been completely awesome at helping us get the apts. that we need.
So what test did Jana need? She needs to see an Audiologist (hearing) and an Ophthalmologist (vision). Because children with Down’s are often prone to hearing and vision problems, they will be conducting test to make sure Jana is doing good…or if she isn’t, they will make a plan to make her better. The fix could be as easy as glasses or hearing aide to invasive surgeries. Which I am praying deeply that surgery isn’t needed. I’m not sure I’ll be able to handle my tiny baby girl getting cut open.
As far as her vision is concerned, it seems like she is great! She makes eye contact with anyone who talks to her, and is always looking around being nosy 🙂 Her hearing however, we’ve been slightly nervous. There are times where we feel she should respond to noises and she doesn’t, but other times she seems very aware. I’m not sure if we are just looking into things too much or what. But I am anxious about that test.
Great news!! As I was writing this up, the Audiology department called. Her testing got approved and a new test is scheduled for this coming Friday!! I’m so glad that they were able to get it all set up for her. Please pray for us on Friday between 9-11 am. The apt will take about 2 hours. The first hour involves us getting her to sleep…the second will be conducting the test. They will give us results as soon as its over. I’m sure the whole time I will be a nervous wreck!