Keeping An Eye on Things

 I thought you'd like these photos from yesterday. I tried to see if the glasses would help with Oliver's squinting. They did not, but they sure made for a cute pic. 

Thank you for your prayers today. We are so thankful for our O-Team! Many of you have had some great insights, and we are honored you care enough to help us figure out this eye issue.

Here's a little update from today. The squinting has continued. We're working on ruling out allergies, headache, medication side effects, seizures and neurological changes. I've been emailing with the Boston team and they are curious to see what the EEG data from this week will show. They do not feel like this is an urgent concern, which is a relief! We are going to keep an eye on it (pun was intended--wink,wink) and hopefully time will tell.

Amy, a friend of mine who is the mother of a little girl with TSC, said her daughter did a similar squinting thing, and for her daughter at least, it proved to be behavioral in nature, not neurological. That was very good news for us. Her daughter and Oliver have have many medical similarities and her friendship has been a wonderful gift to me. We've visited together in Boston a few times, and being able to talk medical-speak with her is (in a weird way) very empowering.

Now if we can address these new seizures and the sad hiatus of the words "I Love You." I really hate when that phrase goes away. I'm sure it will be back...

I just have to be patient and see the "I love you" in his eyes, even when I can't hear it from his mouth.

This is Oliver's scar 6 months post-op. Not too bad, huh? The biggest area, where hair won't grow is from the area that got infected and required that super scary emergency (3rd) surgery.