Wednesday, July 11th-Update

Hi. Oh geez, where to begin? Well let's just get caught up. Since last Wednesday, we have been to the clinic three times. twice for exams and yesterday because Alex was having a horrible headache that would not respond to OTC meds. They gave him some morphine and he felt much better. Seems that he just hit a wall as he was coming off the steroids. Either that or in my exhaustion, I mixed up his meds and gave him two Robinol instead of one Robinal and one mg of steroid. Alex has had some hard times lately. He has become very clingy at night and holds either mine or Steve's arm very tightly all through the night. He is so afraid of choking and the bad dreams. It is heart wrenching and makes sleep light at best.

Also, Alex has given us some clues into how he is doing mentally. The morning after the fireworks show, Alex told Steve that he was sad when he was there. Steve asked him why and he replied, "Cuz I just wanted to run and play (like the other kids)". Then we have noticed how much he does not want to go into the school to pick up or drop off Zoe. One day as his former classmates passed him, bouncing along, each one looked at Alex with awe and wonder, but none said "Hello". I know why he hates going in to the school. It is hard on Steve and I as well to see Alex's friends a year older, walking, talking and being normal. Just like we pray for Alex. It really shows you what you have lost. But I force myself to focus on what I have and just smile and get in and out asap. I don't think ill of the children at all! I really want everyone to understand that; I know these kids are great kids and they are behaving in a completely normal way to a very strange situation for them. It's strange for all of us!

Steve and I were talking last Monday night, when Alex was hospitalized and prior to the MRI, we were evaluating the situation and "checking in" as we call it. STeve said that he prays every night that Alex's suffering be put on him. I was aghast! NO!! Then we debated whether the Universe works that way. Is it an eye for an eye or can miracles happen? I was on the side of miracles. Especially since we have so many of you helping us along this journey!

Okay, let's end this on a good note. At the spur of the moment on Friday, Zoe and I headed to Aspen for a girls' weekend with her best friend and her best friend's mother. We stayed at an apartment owned by their Aunt and Uncle. It was a lovely trip and I have not seen Zoe so happy in a very long while. I hope to post her pic soon. The moms bonded while the girls played and fought and played some more. We came home Sunday, but the trip home was a long one and I needed a weekend from my weekend.

Another positive event was that Steve's friend, Rick is in town and took the family out to dinner last night. Alex was so excited to see Rick again (he loves company!!!) and was in rare form all evening. He wants to know everything about our days, plans, appointments, baby sitters, etc. He has asked me several times "who is going to watch us when you get your haircut?" I assume he needs to feel in control of something in his life. Everytime I pick up a phone, he asks "who are you calling?" I have to tell him who and why. This has yet to get exhausting but I bet it will soon!!

Okay, that is it. Alex is still on a high dose of steroids and at his highest weight ever, due to it. He has alot of trouble getting around, due to the leg / bone pain and extra weight as well. We go back tomorrow morning for another exam. Fingers crossed, but I can tell this is going to be a long, slow process.

God bless!
G