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!