Monday, July 14, 2008

Midnight Musings

I guess it's time for an update. Where did last week go? It's after midnight and I finally decided to call it quits after spending most the day working on a project for work. I almost never bring work home (because who's got time to work at home?), but time is of the essence on this particular case, so you do what you gotta do.

We managed to stick to our commitment to get out of the house once a week, notwithstanding grumbling from the troops. Because it was cooler than usual yesterday (under 100 degrees) and cloudy, I thought it would be fun to walk somewhere for dinner. I absolutely dread putting Jack in the van - it is so much work to get him in and tie his wheelchair down. Because we have so many choices of places to eat that are within walking distance from the house, I'd much rather walk and push Jack's wheelchair than go through the hassle of getting him in and out of the van. While it was definitely cooler than normal yesterday, the humidity was much higher than usual - thus, the grumbling. We walked about a mile and everyone was pretty much a sweaty glob by the time we got to the restaurant except for Jack, of course. Oh well, at least we all sweat together as a family. That's really what it's all about - family time!

To respond to a couple of the comments on my last post. I've considered asking Kristi if she wants to come with us to Disneyland to help out with Jack. However, I'll let you in on a little secret ... Mark hates Disneyland. So, as far as finding a volunteer to go back to the hotel with Jack, not a problem. I also think it's important for Kristi to get a break from Jack. She works long hours for us and I know it can be draining and monotonous at times. I don't want her to get burned out and want to leave us. Kristi's been Jack's primary nurse for six years now. Our one-day a week nurse ditches us during the summer and goes back home to Minnesota to work at the Mayo Clinic there. She can't take the Arizona summers. Wimp! ("Hi Angie"). So, right now, Kristi is working five days a week and she definitely needs her weekends off.

Sarah, I'll be sure and let you know if we are coming and when. I'd love to meet up with you and your kids.

Jen - yes, the ventilator was loud in the theater (at least to me) and I was a nervous wreck the whole time worrying that it might be bothering someone. I really need to get over worrying about what other people think. It's something I still struggle with ten years into this journey.

And, I never fly with Jack, only drive. I flew once (back in 2004) and never again.

(and, Rachel and I have talked)

Yesterday's humidity brought thunderstorms today. I love an occasional thunderstorm that clears out the air and leaves that fresh rainy smell in the air. Here are a couple of pictures I took this afternoon when I was outside enjoying that wonderful after-the-rain smell. Just trying out my "artistic" side.





Happy Monday my friends!

. . . and can I tell you that there is nothing more annoying than finally crawling into bed at 1:30am only to be forced out of bed by an alarming pulse-ox which you discover registers Jack's sats below 93 not because he needs suctioning but because the new probe you just put on his toe is falling off. Some of you reading this know exactly how annoying it is. Grrrrrrrrrr

6 comments:

Anonymous said...

I'm glad to catch up on the Schrooten's! We just got back from a week long vacation. I can relate to not wanting to take the gear places--not in the same way that you do, but even our amount of gear is a pain to lug. Our flight home was delayed 6 hours...

I hope Jack had a great time at the movie, and I hope you can get to Disneyland with him. Have a great week!
Kristy

Sarah said...

Rain! I'm so jealous. It was humid here this weekend too, but only L.A. got the thunderstorms. I'm glad you're staying committed to your outings. You need to get Eric one of those boards that he can hook to Jack's wheelchair and stand and roll behind it while you push. ;) I hope you get a chance to catch up on some rest. There's nothing worse than a faulty probe!

Melisande said...

Hope you have a great trip to Disneyland. There are many advantages to living further West!

I'm glad you guys are trying to get out. I completely understand. Just going from one to two kids has totally thrown off my getting out schedule. I'm going to have to find a new routine!

Anonymous said...

Grrr I hear you sister about the pulse ox. Abby usually alarms about 10 minutes after I have gone to bed. zzzzzzz
Those pics are beautiful.
So glad that you all got out as a family.
Love,
Tess

Cindy said...

Ann, you should get an EZ lock for Jack's chair. It really does make life soooo much easier! I've got two of them and I could never go back to tie-downs: http://www.ezlock.net

Faith said...

I dread putting Faith in the car and she's only 19 pounds...I can't imagine a 9 year old. WOW.

Hmm so the vent ashame never goes away, huh? I appreciate your honesty! It's only been 3 months and I am always worried about it when we go out.

Thanks for posting something we can relate to (as always!)
-Jen :)