Overdue Update: Food Allergies, Lots of Improvmenet, and Research Study!

Well, this week will be five months since Makayla's eye muscle surgery, and it's been almost three months since an update! About Time I get to it, don't you think?

Life has been very busy for us in the last five months. The same month that Makayla had her surgery, our family made a big move from the San Francisco Bay Area, to Southern California and I have been working to start my own business. About the same time as our move Makayla started having a lot of tummy trouble. So bad that she wasn't sleeping though the night, and was consistently fussy. It's taken us several months to sort it all out, but we finally think we have it figured out and attributed to food allergies.

During my last update I said that I wasn't hugely impressed with the slowing of her eye movement, but that given all her food allergy problems, I wasn't sure if we were seeing the true results of her surgery, since we know that being tired and agitated can seriously impact the amount of movement in nystagmus. Makayla has been eating allergy-free for just over three weeks now, and in this last week we have noticed the biggest change in her tummy and temperament....and not surprisingly, her eye movement!

I want to explain for other parents considering the surgery for their kids, that from what I understand, Makayla's nystagmus is unique, in the type of movement she has and the amount. I've talked to so many other moms who said after surgery there was nearly no movement at all. Although I still think Makayla's nystagmus is noticeable, I feel the surgery was 100% worth while because of the improvement in her depth perception, and from a cosmetic perspective, the uncrossing of her eyes and the head tilt correction. And now that we are figuring out her food allergies, the moment has lessened quite a bit. I have even caught her watching the TV from the couch recently, instead of right in front of the TV! It also recently occurred to me, that I haven't had anyone ask about her eyes since the surgery. We used to get stopped in the store at least once a week by someone asking about her eyes.

Some other exciting new is that we have been accepted into a research study at NIH on albinism. Last I updated, we were supposed to speak with a geneticist at Stanford, but because of our move, we didn't make it, but we probably wouldn't have gotten to have any actually testing since it's almost never covered by insurance and VERY expensive.  Instead, at the end of this month, we'll be heading to Washington DC to take part in the research study.  They will do genetic testing, and some vision testing.  It will be really interesting to see the results of those, since it will be her first tests since her surgery!