Sunday, November 26, 2006

Relaxing Weekend

We are coming to the end of a very relaxing and enjoyable four day holiday weekend. It was so nice not to have to get up early and herd everyone out the door for school. The pictures are of everyone just hanging out today (even our dog, Rylie). Mary, naturally, waited until Sunday evening to start her homework. I personally think it's ridiculous to give kids homework over a holiday weekend that should be spent enjoying time with family. Eric is watching Hilary play a video game on the TV. If you are wondering where Mark is ... he was outside putting Christmas lights on the house and decorations in the yard. It's somewhat difficult to get into the Christmas spirit here in the desert when it's 80 degrees and you are wearing shorts while hunting for the perfect Christmas tree! Since we are having a full house this Christmas with my brothers and sister and their families coming into town, I thought we should at least try and make the house look "Christmassy".

On the Jack front, we are now dealing with another pressure sore right next to the one that is finally healing. I predicted this! The pictures I posted a few days ago of Jack's back don't begin to do justice to what his back really looks like. The bumps all over his back make no sense to me .... I can't even tell where the hell his spine is. I think the nice, smooth "C" curve he had prior to surgery was much better than what I am seeing now. I really need to run my questions and concerns by the St. Louis ortho, but the guy is so unlikeable that I can't bring myself to even compose an email to him. Another concerning issue is the contractures in Jack's ankles, knees and wrists that are getting worse by the day. I've no doubt that laying in bed for months is contributing to this. I try putting splints on Jack's feet, legs and hands, but he just whines when I do (can you blame him?) I feel like there just isn't much I can do to make life better for Jack anymore. I so much want to get him OUT OF BED, but at the same time, I'm terrified of what our next issues could be ... i.e. broken hardware. When I asked the ortho how would I know if the screws were to break off, his response ... "you'll hear popping sounds". Okay, and then what? I'm beginning to wonder if Jack is at a point in his life that he will always have issues and will never really be the status quo again. I have a lot of questions to run by Jack's (St. Louis) neurologist who is supposed to call me this week. When I emailed her last week she must have sensed my frustration and despair because she asked for my phone number so "we can talk". I'm looking forward to talking with her, as she has a way of telling it like it is, but always tempering it with compassion.

That's the update from sunny Phoenix. Thanks for checking in.

(I have to rub in the "sunny" part for my sister, Maureen who thought it was a wise decision to move to New Jersey a few years ago. I'm trying to convince her to move back home. I mean really, who moves TO New Jersey on purpose?)


Carrie said...

I'm glad you and the family had a nice relaxing long weekend.

You should not complain about those of us SMART people in New Jersey...I know you can't wait to come see the east coast. At least Christmas here feels like Christmas!

Love to the kids

Cindy said...

Does the St. Louis neuro know the St. Louis ortho? Maybe the compassionate doc can talk to the uncompassionate one for you?;-)
Glad you had a nice relaxing holiday weekend.

Kristy said...

I'm so happy your weekend was relaxing and fun. I'm jealous of your nice weather!!

I hope you can get some answers from Jack's doctors soon. He looks very sweet and relaxed in the picture with you. What a cute boy!