Here we go! Thanks to all of you for the prayers good wishes hugs and help. It may be awhile before I can update because cell doesn’t work in the H very much. Know she is in good hands and that God’s white light surrounds her – and us 🙂
Catherine is scheduled for 7:45 am tomorrow. She will be first and only scheduled case for Dr Miller. Thanks all for prayers and support.
Love and hugs,
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:
- Elmo chair
- Night Night Daddy
- Bedtime for Sarah
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.
- Love Brian better. OK, I try to do this every day anyway, but may as well list it here, too.
- Do more yoga with Catherine. She does great with it, and Yoga For the Special Child really is a great resource. I love it when I hear her take a deep full breath after a great stretch.
- Quit saying, “Dammit” in front of Sarah. Neither Brian nor I realized we were saying it until we heard it come from her little mouth. Fortunately, she doesn’t seem to know the meaning – yet.
- Get the basement cleaned and organized so we have a clear therapy area and Conductive Education area available daily without having to move a bunch of stuff when we want to use it. We’ve been working on this all week since I’ve been off work. I really hope we can get it finished before the 16 days are up.
- Buy a mobility van (I like that terminology way more than “handicapped van”, don’t you?). We were all ready to go and then reconsidered the rear entry Toyota Sienna, which seems to be the front runner for now. After pulling in the lot of IKEA recently and finding very few spots available in general, not to mention those with enough clearance to deploy the ramp out the right side, we feel pretty confident it’s the right choice for us. But I’d love to hear if anyone has other experiences.
- Start a monthly date night with Brian. OK, this one really should stick.
- Turn off the TV one night a week and read. Doubt that one will.
- Get up earlier and exercise. I love the idea of this, but even just writing it makes me want to sleep in all the way to my normal 5:20 AM alarm.
- Research HBOT for Catherine – again! And maybe actually try it.
- Get Sarah into daycare so she can make some little friends. Aren’t toddlers the cutest playfriends?
- Post more frequently to this blog. At least weekly.
- (my favorite number, and the reason to end the list here) Find a way to laugh at least 10 times every single day. And really, if I do that, won’t the rest just sort of take care of itself?
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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