8/4/09 One step forward, one step back

Just got back from seeing Chris. His brother is leaving tomorrow to head back to Washington D.C. and I am sad. The girls have really enjoyed having uncle Tim here, he has spoiled them with attention. It warms my heart to see them respect and love him at the same time. We look forward to having Tim and his wife, Jenn back here sometime in September.

Chris did not have his trache removed on Monday as previously thought. The Dr. who was attending that day was worried that it was a bit premature and wanted to really be sure Chris could cough on his own.  Chris was disappointed but understands it's better to be safe than sorry. They gave him a smaller trache today, which he says is a little easier than than larger one. So, one step back.

The step forward is he got to the workout room on Monday! Originally they said on Thursday, so a few days early. Okay, it was a quick trip because his blood pressure started to drop but I still see it as a positive. He went to the work out room again today........twice for an hour each. He is making great strides, everyday. His right leg continues to move more and more, the left is coming along, just not as quickly. Chris is also able to put his right hand thumb and pointer finger together, so more movement in his hands too! ( SO maybe more than one step forward).

At St. Jude's they have a family meeting once a week, where we get to sit down with Chris, his doctors and any family, so we can hear about their opinions on his progress. They will be giving us a general outline as to when they think Chris can come home. Chris said he heard he would be there six weeks in total because we don't have a shower downstairs for him to use. Of course I want him home sooner but I need him to get strong and be physically ready. I know he is already mentally ready to be home.

Caitlin is still struggling with Chris not being here. She doesn't eat much and can't seem to fall asleep easily. Luckily I ran into our pediatrician, while she was walking her dog (it pays off to have your pediatrician live two streets away) and she gave me some great ideas on how to help her. Regan is the one who keeps me laughing. Being four her world is all about play-dates, Webkinz and watching the Disney channel.

Looks like the rummage sale is organized and all set to be at Hawes school on August 15th. Thank you again to Molly, Ann, Meredith, Lisa and Jami for taking charge of this event. If anyone needs more info, just let me know.

PS Chris read most of the blog today........so feel free to post a message to him.

Goodnight for now, as always, thanks for your prayers,

Christy