Sometimes light tells the story.
I don’t normally do this on my blog. This is a really great fundraising deal though, so I’m working hard to make it happen. Catherine gets help from Bello Machre and we’re walking on June 8 to raise money for them and for Catherine. The cool part is that Catherine gets HALF of the money we raise directly to her. AND if we raise $5000, our family gets to go to DISNEY! It would mean a lot if any of you reading could consider a donation and consider spreading the word to help raise some funds for this great organization and for Catherine directly. We use them for care and services and they enable us great peace of mind!
I’m in the process of editing some photos of our recent family vacation, celebrating 20 years of marriage! And I also plan to post soon about the softball team Catherine has joined – Dream Catchers. All coming soon, so stay tuned…
Thanks so much for any donation you can make. Take a look at this site:
Hugs to all!
Don’t really think any more needs to be said.
Happy Birthday Catherine!
Sorry for the delay in the update. Catherine is doing quite well, but I got sick and couldn’t update last night. They did surgery with an epidural in addition to general anesthesia, so she didn’t need to be put as deep with the general making her recovery better and enabling her respiration to stay stronger. She had PT twice yesterday and seemed to do well during it. Very little signs of added pain, which is great. Means the epidural has been working.
The epidural will come out today, most likely as it’s leaking and they’ve been balancing the leak and potential for infection with the pain management it’s providing. The doc had originally hoped it would stay in until Saturday AM, but looks like they’ll pull it this morning.
The biggest challenge now seems to be getting Catherine home. She’s wider now, and swollen and won’t fit into her wheelchair. So, while they continue to work on options, the current plan is for her to ride home on Sunday in Sarah’s car seat, which means Sarah would ride home in Catherine’s wheelchair. Bizarre, right? Whatever gets us home safely and comfortably!
I, unfortunately, have come down with a really bad cold. I’m hopeful it moves quickly so I can go see Catherine tomorrow on the train with Sarah. If not, we’ll wait and go up on Sunday I suppose. Sarah is ready for everyone to be back together. Skype provides some help, but she repeats roll call every morning over and over as she keeps tabs on where everyone is: “Daddy at hospital. Cackie at hospital. Sarah at home. Mommy sick and Mommy goes to work.” She’s got it all right, but I think she’s ready for all the players to have home at the end of their names.
Many thanks for your prayers (and patience with this update!). Let’s hope she keeps doing as well as she’s been thus far.
We’ve developed a nice little routine for bedtime. At times, I’m frustrated by the length of it, but mostly, I think it serves us well. To put it in the terms Sarah knows:
All the while, Brian gets Catherine ready for bed in their own special way.
The best is that Sarah needs to put Elmo in a little blue plastic chair covered in stickers that I bought at a thrift store for fifty cents before we make our way to bed. But then she immediately requests him as soon as her little head hits the bed. Brian’s asked me, “Why don’t you just take him in there with you?” Well, because that’s not the routine. And sometimes it’s our routines that help us settle between the business of the day and the stillness of the night.
I like our routine.
Each year at this time, I wrestle with new resolutions. Part of me is giddy at the prospect of starting fresh and being better in many ways. Part of me gets undone at the thought of making promises to myself or others that history would suggest I’m going to break anyway. In fact, I read recently that most people give up on their new resolutions in the first 16 days. Hmph! That’s not very long.
So, here’s a list of things I may or may not try to do for the next 16 days. After that, we’ll see how it goes.
Here are 2 photos of Catherine and Sarah. If I bail on my resolutions, I’ve got some pretty great stuff to fall back on with these two, don’t you think?
Happy New Year everyone!
Catherine has been attending UCP’s Delrey school this summer. So far, she’s doing great, and we’re really happy with it, especially in comparison with the county school for special needs kids. They’ve been able to feed Catherine and to help her use switches to communicate, and she’s doing great! She had a “jam session” with one of her classmates, and they both activated switches to make music. Both these kids are ones folks might think can’t do anything. But Delrey believes in these kids, and they work harder and look a little more creatively at the ways in which the kids can respond.
For example, the one boy uses a switch at his toe and his elbow. I remember walking into Delrey the first day. We talked about using Catherine’s legs for switches rather than her hands. They wanted to know which leg was more responsive. I guessed the right, but told them I wasn’t sure. They asked what would be a second point? “A second point?” I asked. Frankly, I would be happy to get one point communicating clearly. “Yes, we like to find two so we can work on more complex communication ideas.” Wow! Not only were they trying to find communication opportunities; they wanted COMPLEX communication opportunities. I’ll take it!
Anyone in the MD area reading this can check out the school at http://www.delreyschool.org/ It’s a great program.
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