Wednesday, August 1st-Hump Day

Better day after bad night. Alex was completely restless due to several factors, constipation being the most prevalent issue. I think it had something to do with sitting in a hospital bed all day yesterday. Seriously, we were at the hospital from 9:30a to 5:30p! The day started with a consult/eval by the rehab supervisor to review Alex's needs to resolve his choking, drool, swallow and sleep issues. She wants to do another swallow study and a sleep study. Dr. F only thinks the swallow study is necessary and that the sleep issues (apnea, which he does not have, and I told them this several times) will resolve itself with the weight loss and a longer duration of time from radiation.

Today, Alex and I were at the hospital at 9a for OT. His therapist introduced him to a new tool that has several stubby sides and different vibration settings. She used it to get Alex to move his tongue around and feel different parts of his mouth. Alex's drool is quite significant and even though he was tired and miserable, he did the exercises when I told them they would help him with his choke and his drool. What a wonderful kid huh?

Then we went to the clinic. They were very busy and Alex was so dizzy that he asked to lay down on the exam table. The doc came in and said that we are to accept the dizziness, the choking, the double vision but not any new symptoms such as unconsciousness, vomiting, and/or increased weakness on right side. Isn't that just what you want your doc to say to you, about your kid?

Luckily, they sent us home and we picked ZG up early from school to come home and have a long, long nap. Then we had a play date with Ms. Katharine, Master Nicholas and their mom, Jo-Nell. Alex was so excited about having friends over! I'm glad I did not flake out and just blob out on the couch, like I felt like doing. Instead I got up from nap, cleaned the house quickly (the only way to do it) and ordered Thai food! We had a great visit and everyone seemed to enjoy themselves. Katharine and Alex have been friends since he was 4 months old. She had a lot of very good questions and Alex even tried to walk by himself while she was here. He ended up holding one of my hands, but he did it!! I wanted to do a happy dance and cry but I kept it in!

Okay, well tomorrow is a well timed eye exam by one of the best pediatric eye docs around town. He knows Alex and has examined him since June 2006 (even before we knew about the bump). I am anxious to hear what he has to say. Alex's eyes sometimes get jerky/fluttery when he tries to track something. This would make me dizzy too! I know eye movements are controlled by the brain stem but Dr. F does not know why he would be having blurry vision. So that is where my anxiety lies. What if there is something on his optic nerve? What if it is T3? How dear God would I handle that news? We are so close to our breaking point now!!

On that note, I just want to say that even though I post blogs like Monday's. Somehow when push comes to shove, I am up and ready for the day when I am called upon. I think it is due to my absolute will to beat this; or my resolve to continue to support Alex in everything we have to go through. No matter how bad I feel, I just imagine (or try to imagine) what it is like for a 4 year old child to deal with every day. I also know that every positive thought sent our way helps my molecules gain energy and get my butt out of bed!

So thank you! God bless you!

G