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.

I would do ANYTHING to help my Dad!

In recent years, I have taken vacation days from work and have gone to Florida to:
-help my Dad set up new computers and transfer files
-been his HelpDesk when there have been technical difficulties (mainly user error)
-spent a week helping him get around and do his physical therapy after knee replacement

He has recently made another request of me. Though I am tired, taking on more work responsibilities, back in school, and want to save vacation days, I just don't think I can deny him this request. He called me the other day, and in order to maintain his platinum level status in his travel club, he must go to London......England, that is. He would like me to go with him.

*SIGH*

Once again, I will sacrifice for my father the way my parents sacrificed for me.

IALAC

"I Am Lovable And Capable" - IALAC
Frequently, this acronym makes me want to hurl. However, I'm making attempts to be more positive these days. Examples of being positive:

* I positively want to stop saying "asshat" after speaking to certain people on the phone.

* I positively want to stop saying that "Exercise SUCKS!"

* I positively want to love the price of Gas, but that one is out of my control!!!

Maybe I should start a positive thoughts of the week thread, or at least thoughts, or at least consider having a list of positives for the week...........maybe for the month.

I'm positive that is a good idea :).

How much do I LOVE......

**that I regularly have trouble finding my cell phone in my purse.

**that I drive past my Ex & his new wife going to or from work on an almost daily basis.

**that I look in the mirror and am surprised to find that I'm not cute anymore, just older and fatter.

**that my children are not in my presence every single day of my life.

**that others are "bringing sexy back", yet I brought it out back and beat the shit out of it.

**that a review of my "lack of love" life brings me to the revelation that I obsessed over one guy (NO...not my ex-husband) for the last few years and allowed myself to be hurt when it proved to be nothing.

**that I don't have porch furniture and can't sit out on my back deck and enjoy the change in the weather.