I am happy to announce that Ellie no longer goes to daycare and I stay home with her! This happened in mid-April and I think we're both very excited about the change. Since being home Ellie has started standing again and touching things more with her hands and allowing us to touch her hands! She is also talking more (and babbling mama!!) and has not been sick since leaving daycare! Her feeding is still not happening, but we have been able to make more appointments to dentists, opthomologists, second opinion therapies, and much more!
I'm very lucky to have a husband who supported this decision to leave active duty AF and cut our income in half. It was not an easy decision and to be honest it took us a year to get to this decision and see it through, but I think we're happier overall.
We have also started with with the Help Me Grow program and she's started to see a teacher for the visually impaired (TVI), we'll call her Ms. L. We really like her and enjoy what she brings to the table and she knows a lot about Ellie just based on her lack of vision. Ms. L is blind as well, although she has some vision it's so small but she is amazing at how she functions and works with Ellie. We went to see the new pediatric opthomologist, who is the first optho that I've felt confident in, and Ms. L came with us. We (the optho, Ms. L., Dusty, and I) believe that Ellie has some vision, but it is VERY minimal. Ms. L explained that she has to learn how to use it in order for it to be beneficial, which if you think about it makes a lot of sense, so Ms. L works on vision stimulation and vestibular (movement that Ellie craves since she's missing vision which compensates some for the movement).
I may have complained about her PT and OT before but they are really helping her and we're seeing good progress from Ellie. I got second opinions done, and for as much as I like the other PT, Dusty and I decided that right now changing her PT may not be the best idea. Her current PT has invested a lot with Ellie and vice versa.
I'll close this entry with some videos but I first want to make you all aware we are looking into going to China for stem cell treatment. We have done a lot of research, talked to families who have seen vision improvement and those who saw none and decided that the benefits outweigh the costs. So, stay tuned for updates on that too!
