Sorry for the delay. It's been quite hectic with school and job searching, but here are our latest updates.
Zoe had testing done in January that has ruled out Rett Syndrome. This is good news, because it rules something out, but is bad news because we still don't know her condition. There is a possibility of GLUT1 Deficiency Disease, and her geneticists are consulting with her neurologist to see if she fits it well enough to perform a spinal tap for diagnosis.
Other than that, Zoe is doing WONDERFULLY in school. She, according to her teacher, is only one of a handful (literally) of kids who can recognize every letter of the alphabet, count to 15, and recognizes every colour. The kids in her class love her, which is awesome!! Other great news is that the other day, she went into the Kindergarten bathroom by herself, pulled off her diaper and sat on the toilet!! Let's hope this is the start of some potty training!
The glasses she has been wearing were helping, but her right eye is still weak. Her doctor has us patching her left eye for two hours every day until February. This is pure hell on earth because she lasts 10 minutes before pulling the patch off. We probably go through 4-5 patches in an hour, and those patches ARE NOT CHEAP!!!
Let's see...what else?
Zoe will be having her surgery on November 24 to remove her tonsils and adenoids. Her tonsils and adenoids have grown from Grade 1 to Grade 4 plus since she was originally seen in February, and are now causing obstructive sleep apnea. She spent 3 nights in the hospital on monitors, having minute or longer apneic episodes, with o2 levels dropping as low at 83%. We are GLAD, beyond GLAD that they are finally coming out, but scared as hell too, because she doesn't do well under general anesthetic. She ALWAYS ends up intubated.
But on a happier note, Zoe has had her wish granted by the Make-A-Wish Foundation. On November 13, we are being picked up in a limo to be taken to the airport and flying to Orlando for one week. We will be staying at Give Kids The World resort and going to the Disney parks, and maybe even having a tea party with the Disney Princesses. She is most excited about the princesses; Isaiah is most excited about the "giant plane to Marineland", lol. (Whale and Dolphin theme park in Niagara Falls, Canada).