Tuesday July 18th

Well it is 10:15pm and I should be heading for bed, but I just had to get this down. Alex has been in bed since 8p and he just called me back to the nursery to ask me to be sure to add SpongeBob Squarepants Super Mac 'n Cheese to our grocery list. It probably loses something in the translation, but it made my heart sing! Yes, I wish he were asleep, but at least he is not crying in terror, and he is showing interest in food again!

I actually had a very productive day. I got a work out in and several "to do's" off my list. Joy came by for a few hours this evening to help out with dinner and bath night. I met her when she was an assistant in Zoe's classroom and can't rave about her enough. I feel so comfortable with her and she is great with the kids. It seems like she's been with us for years. It was very nice to have some help this evening too. When she came in Zoe became very upset. I am pretty sure she thought I would be leaving and therefore demanded to be held for the next 30 to 40 minutes. She finally relaxed and was soon playing with Joy as Alex and I made chocolate chip cookies together. We love to bake together and it gives him an opportunity to practice his manual dexterity. Then we had a wonderful meal and more play time then baths. Alex was reluctant (putting it nicely) to get in the bath and then did not want to get out. Zoe was exhausted and fell asleep as soon as she was put down.

The Benadryl did absolutely nothing for Alex last night and I did not give it to him this evening. I truly believe his mind is struggling to reconcile all that has occurred in the past month. I know I would be terrified if it were me. I can't imagine how a mind of three and a half years processes this. All I know is that we are doing everything we can to assure him he is safe and loved and will be okay. It is hard sometimes though. I have wanted to just cry with him on more than one occassion.

Well, as that last paragraph indicates, I have been advised to get some counseling. My doctor is researching some candidates and I hope to hear from her soon. I really just don't know when I will have time to visit with a therapist. I guess it will all work out somehow.

While Steve is gone, we are doing our best to keep busy. We have dinner plans with some friends that have children tomorrow and also Alex's first physical therapy appointment in the afternoon. I can't wait to see him more stable on his feet and stronger with his right side. I have also made a audiology appointment for next month. The neurosurgeon said that while monitoring Alex's brain during surgery, they found his hearing diminished on the right side. I whispered in Alex's ear the other day and got no response. Perhaps he was just practicing for his teenage years by ignoring me?!

Alex told me tonight that he does not want to go back to the doctor's. It will be difficult for a while to get him into a routine, but I know it will happen. I remember when we went to Children's Hospital for the first time to get the MRI. I told Nadine then "I really don't want to get to know this place". Well, I'm sure I will be able to give tours and put names to many faces by the time this is all over. What am I saying, it will never be over. I still have not come to terms with the permancy of this situation. Alex will have to have MRI's for the rest of his life. After this tumor is dealt with he has a 50 / 50 chance of reoccurence. So the sooner I get used to it the better, huh?

Well, this posting seems to have taken a different turn than what I intended. I think it has become a journal as much as a means of communication. I hope I don't regret that anytime in the future. I just feel better letting everyone know what this really looks, feels, tastes and smells like. It helps me feel like I am dealing with it. So let's return to the positive. Alex wants SpongeBob Squarepants Super Mac 'n Cheese!! Isn't that just the best?!

Gwendolyn