Sunday, October 22, 2006

Weekend Activities

We kept busy this weekend with the usual flurry of activities ... you know, laundry, house cleaning, grocery shopping and, of course ... changing videos every hour on the hour to keep Jack entertained. Actually, we did some fun stuff too. Mary had an Irish dance competitition and she did quite well - even got a couple of first places. She will dance in a competition in Portland next month, but I won't be able to go with her since I used all my vacation time at that wonderful vacation destination known as St. Louis Children's Hospital! We also painted pumpkins today - Jack is posing with the Elmo pumpkin.

Since Jack is doing so well, we are weaning down his vent settings some. He had such a terrible year last year with a lot of pneumonias that his settings were higher than usual. However, now that Jack is straighter and his abdominal contents are no longer being shoved into his lungs and he is healthy and infection-free, he is a bit over-ventilated. Although Jack will never be vent-free, we don't want him to get too much vent support because being over-ventilated can change the blood pH - although it's not as damaging as being under-ventilated (per Jack's former pulmonologist who I still rely on when it comes to Jack and his vent). I turned his settings down to what they were a year and a half ago. He seems to be tolerating it fine. Now, who am I going to get to write the order so that the nursing agency won't have a fit?

Thanks for checking in. Life is uneventful ... life is good!


Anonymous said...

I love uneventful
Jack looks happy. I love it.
Mary looks beautiful in her dress. Congrats on the competition and good luck at the next one.
Glad to hear about the vent settings. Even lower settings is a good thing even if then vent is for a long time. Lower settings just sounds like a better thing.
Now if I could get my little chickie to lower hers, tahtw ould be great. :)
Here's to more uneventful days.

julie worthington said...

Love Elmo - he's really cool and it's good to see Jack's smile again. Mary's dress is so pretty, she looks lovely. Great that you got the chance to do some regular 'stuff' over the weekend.
Excellent news on the vent - keep it up Jack, we like healthy!

Love Julie

Melisande said...

Jack looks great! We're going to miss you at MW!!

Kari said...

WAY TO GO MARY!!!! I love Irish dancing. I confess to splurging on Lord of the Dance a few years back and I LOVED EVERY SECOND OF IT! Of course, if I actually tried to do it m'self, I'd end up with my feet wrapped around my opposite ears and the neighbor's windows'd be accessorized with small toys launched as missiles. I don't even have two LEFT feet; I have ten dyslexic and toes, and half are manic and the other half are lethargic and all of them want to rule the different directions. SO, I am all in admiration for Mary!

YAY Jack, lower vent settings! Yay uneventful days, and YAY on the most excellent rendition of Elmo as Pumpkin!

I still check in regularly, I just keep forgetting to say "howdy!"...

Anonymous said...

love the pictures, and the happy updates!!
xo christina

Anonymous said...

Love the Elmo Pumpkin...Marisa would be drooling over it!

Mary looks awesome! Good luck in Portland!

Way to go Jack! Anytime you can at least go down on vent settings is a good thing overall. Keep smiling...


Cindy said...

Nice Elmo Pumkin! Congratz Mary:-)