Less Than a Month To Go

Before this month is over, Makayla and I will be on our way to Ohio for her surgery!  Our flight is booked, and our room is reserved at the Ronald McDonald House.  We'll be in Ohio for 10 days, this time, and Makayla and I will be going on our own.

I feel confident that this surgery will make a huge difference in Makayla's life, but that isn't easing any of the anxiety.  Traveling to Ohio with my husband's help, in April, was a huge challenge, so traveling with her on my own (and while she is recovering from surgery) is going to be exhausting.  Judging by how hard getting a new set of molars has been for her over the past few weeks, I am anticipating that the recovery from her surgery will be grueling.  For that reason, I am glad that we'll be stating for a week post op, rather than jumping on a plan immediately.  From what I have read, the pain is much more manageable after the first three days.

Since getting home from Ohio in April, we have been dilating her left eye in lieu of patching, in preparation for her surgery.  We have noticed that since we started doing that, she is no longer using the null point we identified months ago and that was confirmed by Dr. Hertle.  I am currently waiting on a call back from Dr. Hertle so see if this is normal, or if it's something we should look into further before proceeding with the null point surgery.  In the mean time, I spoke to a woman on the American Nystagmus Network's facebook page, who recently had an eye surgery.  She said that during the healing process she was forced to use one eye and that she identified a new unique null point for each eye when they were used independently, which was different from the one she uses when her eyes are working together.  Regardless of Dr. Hertle's opinion of her null point possibly changing, we are still going forward with planning the surgery since part of the surgery includes fixing or improving her strabismus and slowing her nystagmus, which is not related to her null point.

So much excitement, anxiety, optimism and hope!  I can't wait to see what the next year will hold for us!