CF Appointment - 10/29/08

Good stuff at today's CF appointment. I'll provide stats, then some awesome research news...as close as ever to a cure!

Height: 54.7 - up 1.3 in.
Height %: 10% - up 1%
Weight: 76 lbs. up 3.75 lbs.
Weight %: 22% - up 1%
BMI: 17.83
BMI %: 49% - GOAL = 50%.......last visit 52%..... The kid grows which is what they want, AND gains over 3 lbs, but her height didn't go up as much as her weight.....Go Figure! Time to get out the stretching machine again :).
PFTs (breathing test) = 108...decrease of 7 from last appt., but still excellent!
Last throat culture showed light pseudamonas. OK. We are doing the TOBI every other month, so we are doing what we can for now. If it were to drop massively, then we worry (some of the other PFT stats indicate this could be margin of error).

RESEARCH NEWS:
Dr. Z was on rounds today. She heads up numerous research projects and reports out to the medical community and the local parent community on this at least yearly.

I asked if there was any research down the road for a DeltaF508 & R1162X person (Ginny's "mutations", as they like to call them!). She told us there had recently been a very promising research on the GG-something group. We all have CFTR channels which just happen to be blocked in folks with CF. Different genotypes lead to different manifestations.

So, this recent research caused the CFTR channels of the GG? group to act as the CFTR channels of "normal....non-mutant" people. WOW!!!! Basically, a cure of the issue, but not a way to be off of medicine and breathing treatments.

There is a research study of the same type coming for those that have the "x" codon. Lucky us!!!!!! She may be eligible to particpate, but she may also be too healthy to participate. Regardless, let's get this medication on the shelf so Ginny's CFTR channels function properly while she has no lung scarring and issues!!!!

I'm tired now.....

Repairs Needed

So many things broken, so little time....

My dryer isn't drying;

My freezer isn't sealing;

My heat pump doesn't turn on.

Then........ there's me!

I have the flu...

Fever;

Chills;
Aches;

Exhaustion;

Raw throat.

I've got space heaters running, my freezer is held closed with duct tape, and I've got laundry all over the place. It hurts when I move, and it's hard to stay awake for too long.

Where's MY Fairy Godmother???!!???

To Buy or Not To Buy

So, I've kinda got the "wansties" right now.

I live in a townhouse. It's a great layout, good size, deck, good neighbors, and is in a community that is over 30 years old.....this means there are large trees and the homes were actually built with space so I'm not staring into my neighbor's house as they are eating dinner or getting dressed.....this, I find to be a bonus.

HOWEVER........I want a house. I want a house with no one attached to my walls (my neighbors aren't loud). I want a garage cuz I'm sick of scraping ice off my car in the winter, defogging during the fall & spring, boiling in the summer (although, there is the tree coverage which keeps my car from getting too hot).

BUT.......Do I really need a house? That would mean a yard to mow. My son is in 9th grade and enjoys pointing out to me that he will be going to college in 4 years and won't be home (he will be home during vacations, he just doesn't realize that yet).

YET.......He does bring about a good point. Most people downsize as their children leave the nest. I would be upsizing for what? for for who?

So, I ask you: Do I really need a house?

Really good stuff!

Yesterday, I was in an all-day face-to-face kickoff for an online course. I'm the support person for the instructor. I was posting some of her suggestions online as she spoke to the group, posted her resources in our online communities. I was helping the students with best technology practices and getting them enrolled into the course online. I had a really great time interatcting with the students, being there for the instructor and playing around with the technology.

As soon as that group cleared out, it was time for me to prepare for my team's presentation in my graduate certificate class. I was focused on Behaviorism.....which I LOVE!!!!...It was all about Pavlov's dogs & Skinner's rats....Thank you, DR. RAY!!!!

All of this was so great, so exciting, and exactly what I want to be doing.

So, why was I so homesick!I just wanted to sit in my parents' family room while they puttered around and I geeked around online. I didn't need anyone to take care of me, feed me, or anything. I just wanted them around.