Long Day

Today was a big day for Oliver. We have been trying to get into the U of M eye/genetic docs. They were booked almost a year out the last I called. We got a call last week because they had a cancellation and could fit Oliver in! They only meet once a month so you work around them. Oliver was a rock star. He was totally showing off his skills. The last time we went, they did not think he could really see anything. Today Oliver was looking at the vision cards, with fingers in his mouth, reclined against me, totally looking at them all. She was moving them all around and he was like, "Really, when are you going to make this a challenge!" I was so proud of that little guy. Of course as soon as they touched his face he let them have it, BIG time. Three of us had to hold him down, he is tough! He is near-sighted and his astigmatism has gotten worse. But she felt that his residual vision has, for Oliver, greatly improved! YES!!! So proud of him!! No glasses yet but perhaps in the future. Won't he look so intelligent! She said she wants to remain optimistic that it will continue to improve, but.. I finished the sentence. We need to be realists here. Doctors. So predictable. It is true though, with Oliver we don't know when the vision will just stop developing. We are still gonna celebrate this!! We will be testing his hearing at Children's. We know he can hear and is very sensitive to sound, but he does not always track sound from certain directions.

Next we met with the geneticist. Was not expecting anything, unfortunately we got something anyway. Some of the genetic testing returned from the University of Chicago, some are still pending. One test so far came back with differences where there should be none. It is a gene that detects Lissencephaly(abnormality in wrinkles of the brain). Google explains better. There are many types and varying levels of severity, but we really don't want anything to do with this, life expectancy can be very low. We are not worrying too much, yet. More testing to come I am sure. John and I will get another genetic test to see if we share any of these, and Oliver will have more blood work. These results were a little shocking. We were under the impression that they would most likely be negative. Such is life.
So, good news and potentially bad. We are at least thankful for the good and are not going to worry until we know more.
We are on a new seizure med and so far so good. We started at half a tablet once a day and will be increasing that slowly to two tablets a day over 8 weeks. Hopefully this is the med. Oli has been happy again, life is good.
Happy Thanksgiving! There is so much to be Thankful for, for example, all of you!!