Back when Sarah lost her vision for good this past summer I was all about learning braille. I looked into what I would need to do to teach Sarah braille, and even was gifted some braille uno cards by a friend for Sarah to be able to play a game we love as a family.
Except that Sarah wasn't ready to learn braille. She resisted and I didn't push it because I knew that she wasn't ready to admit that this was a way for her to have the freedom to read again. All she saw braille as was another sign of a disease that made her different from everyone else. And so I put the idea aside for a while and focused instead on her health and moving across the country.
But now we are here, and Sarah is growing increasingly frustrated and sad over her in ability to be able to read. Large print books do not work for her. Nor do magnifying glasses anymore. (I have recently purchased 3 different types on top of the one she already had to try and help her out - all of them with stronger and stronger magnification. But to no avail because none of them worked for her.)
So, I contacted a local agency about an hour to an hour and a half away that helps aid the legally blind (which Sarah is considered) to see if they can help either by putting us in touch with other children who are visually impaired or by offering programs/services to help Sarah. We will see what comes of that.
I also just ordered a curriculum that will teach both Sarah, myself, and anyone else in our family who is interested, braille. I think that if she can learn a "new language" and if we make is something super cool that I will have more success in getting her to be receptive to learning it. I think it will help her self esteem as well.
I also would like to get her back on a horse again. She was beginning to take horseback riding lessons before her diagnosis and it was something she was good at. After her diagnosis she suddenly seemed to lose her love of all things horse related...I could never put my finger on why until just yesterday when I asked her if the reason she did not want anything to do with horses was because of her vision she said 'yes'. She said that she was afraid to be on them b/c she cannot see. Well, her answer lit a fire under my butt because I don't EVER want her to be afraid to try/do something because of her impairment. I want her to see that she is able to do all of the things that she did before - even if it means doing them a little differently. So, I will be researching and then contacting therapy horse barns to see if they can offer her a lesson (and hopefully, if she agrees many more lessons) on the animals that she loves so much.
As for her health - she seems to be doing okay. She is off of her steroids and has thinned out immensely. (Almost too much if you ask me.) The sunshine here is doing her body good. I made a decision when we moved down here to see if I could get her off of her monthly IVIG treatment because I just felt in my gut like it was too much for her. She has not relapsed since we have been down here (in fact she has not relapsed since she lost her vision for good back in the summer). I don't think that the IVIG is needed. Maybe it would have helped in the beginning stages of her disease, but it seems for now anyway, that she is okay without it. We are going to visit Dr. Locastro in January when we go back to Ohio. We haven't been to any doctors since last seeing him in the middle of October. There was a health insurance inconvenience down here that won't enable us to seek out doctors to care for Sarah until the new year begins. I am okay with that as this is the longest we have gone without seeing a doctor since her diagnosis back in May of 2013. It has been a nice two month break.
Other than the fact that she carries this disease around in her little body she is doing well. She is a normal 10 year old little girl who is growing too quickly. For that, I am truly grateful.
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