4/27

Ethan woke up and could not keep his eyes open. They were tearing excessively. He had to attend his zoom class. He made it through class but was having some difficulty seeing because his eyes were tearing so bad.

My friend came to the rescue, AGAIN, and got Ethan an appointment at the eye doctor so that he could get “bandage contacts”. His appointment was at 12:50.  As we were driving, with all the eye stuff going on, we realized that I had never given Ethan all of his LIFE SAVING pills this morning. OMG! Induce panic! I said a string of not so kind words, all directed at myself and my stupidity. Ugh!

We check in at the front desk. As we waited to be called back, I was trying to send a panicked  “what do I do?” Email to the NYC team. Will this goof up the bloodwork tomorrow morning? How do we treat tonight? Ugh!

The NYC team directed me what to do via email. We have now put different alarms in place so we don’t repeat the same mistake.

The contacts Ethan got are contacts without a prescription. They sit over the keratopathy and help them not be so bothersome. 

By the time we left, he could already feel a difference. He was able to read his homework without help. It was amazing. 

We are also switching things up for him to sleep. He had his ceiling fan on and we are going to turn that off. 

One of Ethan’s teachers sent us information on the text to speech feature on the chrome book so Ethan can have the articles read to him. Then he doesn’t need me to do it. He won’t have to put up with my “two cents” comments, that likely aren’t very accurate.

Next up was tutoring, then physical therapy, dinner and homework. Ethan did mention he is frustrated that he doesn’t have much free time. He feels like right now his quality of life isn’t where he wants it to be. He feels like he is pulled in a million directions and he has little time to do fun things. I can’t imagine how frustrating it has been for him. He is so damned determined, he won’t give himself a break.

I keep telling him that life will settle down. Layers of appointments will peal away and more free time will present itself. 

Tomorrow is the last wean Ethan has to do and then bump...bump....bump...another one bites the dust. It will be his first day with out a dose of Ativan.

Wow! Then he will be sedative free.

My bright spot today was my dogs. The continue to be goofy and offering such a different perspective on being silly.

Tomorrow is a new day. A Couple of appointments in the morning,  it shouldn’t be too bad.