I survived my first overnight away from Wes. And more importantly of course, he survived. I really wasn’t worried about either of us, but it is one of those “firsts” that will get noted in the baby journal. The coming home to a sweet little boy that was super excited to see me was pretty awesome.
He is having a slightly rougher go of it with this round of chemo. There has been vomiting (again Friday night), and some tough times where he seems to have a lot of tummy discomfort which interferes with his base desire to be happy all the time. Some, or all, of this could be due to the condensed formula concentration we are giving him. He has to get more calories though, so we will have to manage these symptoms the best we can. He will get weighed today and we are hoping he breaks the 19 pound barrier.
From the time he was born until he was 7 months old, he was in the 95th percentile for his height and the 50th percentile for his weight. People would stop us and ask how old he is, and when they learned his age they would almost always exclaim “wow, he’s huge”.
Yesterday we went to Woodmans and Wes sat in the front of the cart like a big boy (after I used a copious amount of wipes to clean the cart!). A woman stopped me and asked how old he was. After I told her he was 10 months old, she said “oh, he’s so tiny”. Yep. What a change. Another woman stopped me to tell me how adorable it was to watch him smile and blink as the big fat snowflakes fell on him on the way out to the car. We’ll just focus on that comment instead.
Wes had his vision exam on Monday. On non-verbal children they do the vision test by attaching four small electrodes to his head, having him watch a series of images on a screen that is a perfectly measured distance away, all while having a camera pointed at his face because when his pupils turn white it means they are focused. Very interesting!
The vision in his right eye (this is the good one) is exactly where it should be for his age. Wonderful news! The vision in his left eye is as we expected – he would be considered legally blind in that eye but it seems that he can see light and perhaps shapes somewhat.
He was fitted for little bitty baby glasses, and he will have those in a few weeks. He is to wear them pretty much all the time, with the purpose just to be to protect that good eye so there is no prescription in either lens. He looked adorable with them on, but it will definitely take us all a little getting used to. And good ol’ mom will try not to freak out about keeping that good eye nice and safe. You know he’s a boy right? Geez. Here we go!
Dr. Empathy (eye doctor) said Wes’ plan for the next few years is to do the sedated eye exam (and any necessary local therapy) every month until he’s about three. At that point he should be able to start being awake for the exams, and if his eyes are stable we could move the exams to every 6 weeks and that would be until he’s at least 6 years old. She said his left eye will most likely begin to drift inward or outward at some point, because the connection to the brain is not as strong in that eye so the brain can’t control it as well. In a few years we could do muscle surgery on that eye that will help it look more in-line with the other eye but it would only be cosmetic.