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Monday, March 15, 2004 1:27 PM CST

The cast has to stay on for 3 more weeks... Kevin's femur has not healed enough...Fortunately, Kevin is a happy guy; he just goes with the flow...
Katie comes home tomorrow with her roommate from school. Should be fun....

Have a good one...

Sunday, March 14, 2004 9:10 PM CST

Tomorrow is the day.....

Friday, March 12, 2004 5:14 PM CST

Yeah! Less than 72 hours until the decastification process! Hopefully all goes well and Kevin's femur has healed well enough, because this is one mighty stinky cast!! Nothing else is new... Katie comes home in 3 days for 3 days... should be nice. James was off today.. We traipsed around the craft store for a while until he he kept chanting "I want to L-E-A-V-E...." lol, so I took the hint.
Maryellen and Kevin are doing very well (and then some) on the Miralax. That stuff is amazing! If you ever have a problem in that dept., Miralax really is a Miralax!!! We haven't needed suppositories in months. LOL, and now back to your regular programming.....

Monday, March 8, 2004 9:28 PM CST

Quiet day today... nothing new. Fought with the insurance company for a while over MaryEllen's wheelchair. We used an in network provider for her wheelchair. They totally screwed up the molded seat- Casted 3 times and still they couldn't get it right. It has been a year since this provider has been paid and MaryEllen can't use the chair! The mold is wrong and the chair is way too tight. The insurance company wanted us to use another in network provider-- "Tony Wheelchair" --LOL --isn't that a riot? That's the name of the company! I told them that there is no way that I am taking chances on another nitwit in network provider. So, suddenly they say that I can go wherever I want, in or out of network. I had to resubmit a ton of paperwork last week, so I asked them why I would have had to do that if I could go anywhere. Their answer... short and sweet.... "I don't know." Sheesh!!

Kevin's cast comes off in a week. Yeah! Although he seems comfortable, I think he is ready to have this thing off. He is so tight everywhere now. Tight trunk, arms and legs. Poor guy- still smiling though.. He's so cute.

There's 12 more days of Winter... I can't wait till Spring....mmmmmmmmmm, I can smell the fresh air already!

And that's today's news... Our motto-- Boring Is Good!

Sunday, March 7, 2004 6:20 PM CST

This is my first entry.... Welcome to our little spot here on the web!

All is well these days, thank goodness. We had a rough December as both MaryEllen and Kevin spent some time in the hospital. Kevin had pneumonia, which is always an adventure with the trach, and MaryEllen had pneumonia and a GI bleed. She was in the hospital 2 separate times for 5 days each. Kevin only had one 5 day stint! (No overlaps, either!) In addition to that, James had pneumonia and Katie had something that was pretty awful as well. It was one long sick month here.

In February, Kevin had an unexpected trip to the Emergency Room. He suffered a fractured femur while the nurse was changing his diaper. Fortunately, (if there IS a fortunately in all this,) he only needed a long leg cast instead of the dreaded spica. It was almost 7 years to the day since his last fractured femur. This one was in the same exact spot, just above the knee, on the left side. (The picture on the main page shows a glimpse of the cast, colorfully decorated by James and one of our nurses). The cast removal is set for March 15th. Cross your fingers! Hopefully, he can return to school in early April.

Both kids are doing well with their chest PT vests. At first I was skeptical, as it seemed as if Kevin's sats were lower after vest use than his norms... We changed the settings a bit and voila.... Kevin has better sats. MaryEllen enjoys the vest also. It seems as if it would feel like a nice massage. I am sure it feels good on their tight muscles. And there is an added benefit..... After vest use, both kids have BMs! We have tried and tried EVERYTHING on the market to make these kids poop... Guess they just needed a $16,000 chest PT vest to do it!

And that's the news... Katie comes home from college next week with her roommate for a few days... That should be fun!

Saturday, March 6, 2004 9:30 PM CST

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