Bunn’s Prairie

When we visited Kaley Tuesday evening she was very alert and interested in the great items Andy brought from the TwinsFest. She especially studied Justin Morneau’s message on her no.33 shirt. How cool! We got out the puzzle Rick and Linda brought and worked on the lap desk. Kaley placed four edge and corner pieces, with some prompting and fine tuning, then she patted them into place. It was slow, but she really concentrated and seemed quite pleased. Yea! If anyone frequents toy departments, she could use another 24 piece puzzle or two, or fewer pieces if you can find such a thing.

Andy brought some of Kaley’s valentine village to kick off the valentine birthday season, always the highest of holidays!! Bring on the hearts!! We are nearly done opening the gifts from Sara’s fifth graders. The socks and hand lotion have been fun. Last night Kaley unwrapped a pretty pair of red and white socks herself and we put them right on! Thanks, kids!

We have been following Christa’s trip to China, reading Kaley the blog and showing her pictures…fun for us, too! Thanks to everyone for their continued love and support. This has taken loads of patience on everyone’s part but is all worth it when we see her enjoy an activity, a story, a visitor…Thank you all!

And congratulations to Andy on earning his yellow belt (8th kyu) in Aikido!

It turns out the 4 days of awareness (and several days after an “off” day of sleeping) were possibly caused by giving her a very small (2.5mg) of Ambien. This was the drug that was featured on 60 minutes late last year. Here’s a link to the story. Kaley was on this drug for a 7 day trial, as prescribed by her her neurologist. I didn’t know about it until afterwards. We compared notes as to which days she was on it and which days she seemed more with it, and they lined up fairly well. We have restarted the drug after a couple of weeks off and she already has already had a couple of good awake days (Friday and Sunday).

Even though she is awake and more like Kaley than otherwise, she is still no where near being at a baseline that I would consider normal. That being said, it’s nice to have a starting point that we can try to work with.

All,

Tomorrow, Saturday the 19th is the annual JDRF walk. This year, our friend EarthaBunny, frequent commenter on Bunn’s Prairie, has organized Team Bunn. Please Follow this link to find out more information.

I’m not exactly sure what has changed, but Kaley has had good awake time with me and others for 4 consecutive days. Not only has she been awake, but she has seemed truly aware that I, and others, have been there. She is doing a pretty good job of following simple commands as well. I plan on speaking to the Therapy folks tomorrow about picking Kaley up full time again.

This is a nice picture of our friend Robert during his visit with Kaley on Thursday evening. Kaley has enjoyed his visits. He has a calming and relaxing effect on her that many of us have noticed.

Thank you Robert.

I had a relatively short visit with Kaley yesterday.  Despite only doing feedings through her J-tube, she still managed to get sick yesterday a couple of times.  Fortunately (or unfortunately depending on your point of view) I was there for the second one, and helped Kaley void her stomach.  It kind of ended up all over Kaley though and all over my hands and arms.  Luckily I was there to quickly get help, and Kaley got some Ativan.  She had a couple of doses over the night, but not as much as she was getting over the past 4 years or so.  After the first dose, Kaley was out and her muscles were more relaxed than any of use have seen in months.  Unfortunately as soon as she woke up a she tensed back up again, but it was nice to see her have a reprieve.