When did Cystic Fibrosis get here?

I know Ginny was diagnosed when she was 3 months old. It's a genetic disease, thus determined from conception. Before we knew it was CF, there were many tests done while in the hospital to figure out why she wasn't gaining weight, had anemia, vitamin E deficiency, etc. Once diagnosed and on the correct meds, things improved and life settled in.

Over the years, Ginny has had colds, coughs, strep, ear infections, etc. Those have been easily resolved with anti-biotics. Her lung function (PFTs) has always been in the 107% - 118% - ideally, you want your lungs to function at 100% so she's been in GREAT shape!

Ginny's weight was a struggle until they introduced us to "the hungry pill" (don't remember the medical name). The goal was to have her BMI above the 50th percentile. She was usually no higher than the 20th until that medication. They had started hinting at a G-tube, but we told them to come up with something else. They did. Within 4 months of being on "the hungry pill", her BMI% shot from 21% to 49%.

Don't get me wrong.....we've had our stressors and struggles with all of the appts, meds issues, germ warfare, insurance, trying to gain weight, trying to kick colds/coughs, etc. But, after the initial difficulties, we settled into daily life with CF......

...... That is, until her PFTs dropped to 89%....... we upped her meds, increased nebs, added Cipro and were to return in 1 month to check again............ they dropped to 81%...... *THUD*.....

She was admitted to the hospital -
She was in for 1 week of IV anti-biotics, respiratory therapy 4x/day, Chest PT 3x/day, and food galore. Just as she was finishing breakfast, snack would arrive - when that was done, lunch was delivered and all meals/snacks were wrapped around all of the other therapies. She has come home with a PICC line so she can continue the IV anti-biotics. There are 4 per day and we had to really schedule things carefully to fit them in with the proper spacing between - not to mention that thing called school, maybe even life.


Guess I can no longer live in my happy, little denial about CF. It's always been there, but now it's sitting at the table.

OMG - I really have to blog

I really should have been blogging over the last 2 weeks while I've been relaxing out here in Northern Idaho.... sitting on the deck, looking at the lake, looking at the mountains surrounding the lake, watching the Osprey pluck fish from right in front of our dock, watching 2 Osprey chase down a Bald Eagle.......
Hmmmmmmm........
Maybe that's why I didn't spend the last 2 weeks blogging. It was too, too perfect to do anything but sit back, relax, and enjoy!
*sigh*
Tomorrow is our travel day. Over 12 hours of a combination of security checks, flights, layovers, baggage claim. Won't be fun, and the weather will be barbarically hot when we return, but we will be home. I will have some time to blog before my next life adventure begins. I've got to finish up my "really crappy day" story, and do some catch-ups here and there. I also have some profound thoughts to ponder.
SO.......I'll catch ya after we return and I've had time to smooch & snuggle with my pups!
C'ya!

The 24-Hour Whirlwind - The Morning Dew Cometh

*BEFORE READING THIS, PLEASE SEE "THE 24-HOUR WHIRLWIND - THE DAY OF" - IT WON'T MAKE SENSE WITHOUT IT*

So, after cleaning up the sewage spew of the previous evening, I was first on the list for the plumber on Friday morning. Before Drew left for the day, I asked him to take a peek at the basement to see if there had been any further sewage flooding. Ummmm..........................

*MORE BAD NEWS*

The landing, powder room, and ENTIRE laundry/storage area was a puddle of water & sewage....ah Poop! The toilet had erupted a sewage volcano. How did I get SO lucky!!!
My A/C broke, I got laid off, and there was Lake Poopy in my basement.
Work from home/Air repair day had turned into mourning the loss of my job and wallowing in crap. I had more men coming through my door than a sorority house on a Friday night, only none of them were drunk.
The day began with a 7:00am call to myPlumber as I was already first on the list. When I explained the situation had gotten worse, they were VERY sympathetic and helpful. They asked if it was something I could clean up myself or would I need a water mitigation company.....a what?? They work with Servpro and would call them and get the ticket started for me. THANK YOU!!! Nice! One less call I had to make.
The best call I made that day was to my brother. I asked for help.....I'm not so good at that. When I first called him he asked me what I needed him to do. I couldn't tell him....all I could say was that I had no A/C, was losing my job, and had a basement full of crap. I didn't know what I needed except to call the plumber. After calling them and realizing that Servpro would be coming out to rip up and clean out my basement, I knew what I needed. I called Charles back and asked if he could come over and help me move my belongings out and go through damaged items. My brother took the day off work to come over and slosh through my basement, help with the physical moving of my belongings, but mainly.... I needed him for me, to be the stability, the person unattached to the possessions, the person who could answer questions when my mind had enough. He was all that and more. It was as though he picked me up and carried me around in his arms that day......and we had a really great time together! I know that sounds crazy considering all that was going on; but, because we were together, I was able to laugh through the tears, stress, and the crap that was consuming my day.

*PLEASE STAY TUNED FOR THE NEXT CHAPTER IN "THE 24-HOUR WHIRLWIND"*

The 24-Hour Whirlwind - The Day Of

*BEFORE READING THIS, PLEASE SEE "THE 24-HOUR WHIRLWIND - THE CALM BEFORE THE STORM" - IT WON'T MAKE SENSE WITHOUT IT*

Thank goodness for my service contract with BGE Home, they told me they could come out on Friday, and it would not cost me a thing to have the problem diagnosed. They would do the annual inspection and cleaning at the same time which might fix the problem. *Awesome!* Wouldn't that be great! Thanks!!!!

I put in the request to work from home on Friday so I could wait my turn for the tech who would arrive at some point between 8:00 & 5:00....way to narrow it down! A rather sympathetic understanding of the need to address the situation led to the approval of working from home. See, I work with people that have also had the pleasure of "home-ownership drama". It just sucks, and we all know it! I went to work knowing that I didn't have to worry about the A/C for the day. I could put it aside, and know that it would be waiting for me to deal with on Friday.

At least I could focus on work.......not so much! The afternoon of Thursday, April 8, I was told that my grant ended in November 2009 (which I knew), and there is no further funding for me (which I didn't know, but was scared of). My contract that goes through June 30, 2010 will not be renewed. My skills, and the things I do are not a fit for the work needed to be done. There aren't enough full-time, project-manager level tasks to justify my employment during times of budget cuts and lost grant funding.
I DO NOT HAVE A JOB PAST JUNE 30, 2010. Well, that sucks!

Sucks though it may, I didn't feel the need to throw myself on the floor and cry, panic, scream. That was a bit more energy than I felt needed to be expended. Good thing I held back.....

When I got home, the kids told me that the downstairs toilet had backed up which led to a water/sewage flood. When you walk downstairs, there is a landing/foyer area, with a powder room straight ahead. To the right, behind a closed door is the finished basement. When you go down the stairs, to the left, there is another door which leads to the laundry room and storage area. Sooooooooooo............ the sewage back-up was in the powder room, foyer, and a portion of the laundry/storage area.

WOW!!!!!!!! My A/C busted, I got laid off, and came home to shit in my basement in less than 24 hours...........now that's a bummer of a day!!!!

*PLEASE STAY TUNED FOR THE NEXT CHAPTER IN "THE 24-HOUR WHIRLWIND"*

The 24-Hour Whirlwind - The Calm Before the Storm

In our lives, there are certain events, or series of events which suck. They are upsetting, stressful, ridiculous, etc. Some of these incidents cause friends to say, "well, you'll look back at this in 5 years and laugh". But, have you ever had a series of events occur in a 24 hour period that would be too much to handle over the course of a year?

Well, let me tell you about a 24 hour period that was so full of shit that you won't believe me. You literally will not believe me! You will think I'm exaggerating, embellishing the truth, or flat out lying. I assure you, my friends, the following is all true. No creative license has be taken to embellish the truth.

After being pounded with chains of blizzards and feet of snow, the Mid-Atlantic region broke yet another weather record. We broke the high temperatures last week by getting into the 90s in early April. It became ghastly hot on Tuesday, April 6th. I had not used my heat in a month and wasn't even CLOSE to ready for the air conditioning, so I refused to turn it on. I put on a fan and peeled off outer layers. I made it through the night, and toddled off to work the next morning feeling proud of my success. Wednesday was another ghastly hot day. When I got home from work, it was 80 degrees in my house, and the afternoon sun was beating through the windows. On Tuesday, it had been just me, but the kids were home on Wednesday.

When the temperature got up to 84, I broke and turned on the air conditioning (henceforth, to be referred to as the A/C). A cool-down was forecast for Thursday evening and Friday so I knew we would be able to head back toward saving electricity for the good of the planet, and my big-ass electric bill.

About an hour after turning on the A/C, I noticed that it didn't feel much warmer. Checking the temperature revealed that it was still 84 degrees. My wonderful son, Drew, checked the fuse box and reset the breakers for me. Thank God that was an easy one.....But, Wait!!!! No, the breakers tripped every time the A/C went on. That was one HOT night! Fans and light clothing wasn't really enough.....little did I know this would be the least interesting, stressful, or difficult thing that would happen to me in 24 hours.

---

*PLEASE STAY TUNED FOR THE NEXT CHAPTER IN "THE 24-HOUR WHIRLWIND"*

Are You There, God? It's Me, Helen.....

So, I'm beyond the point where my friends have all started their period or I must increase my bust. But, why hasn't Judy Blume come up with the follow-up (other than "Wifey"), and created a guidebook for future phases of life.

And, what about the authors of "What to Expect When You Are Expecting"? What happened to the follow-up versions, "What to Expect When They Are Out"?, or "What to Expect When They Talk Back"?, or "What to Expect When They Grow Up and You Wish They Needed You As Much As They Used To"?......

So, do I have to do this myself? Hmmmm.....my sister is an editor/publisher/author advisor....etc. Mayhaps I should propose this? I can even add in the aspects of dealing with IEPs, 504s, Docs, medical thrills......I've got some personal experience and educational background there.

Regardless.......Please, please, please God....... don't turn me into the parent of teenagers.

Love is...

Other than being higher than a mountain, and thicker than water....Love is puppies! My puppies in particular.

They are smart:

- ring a bell to go outside

- learned the "sit" command in one day

- don't piddle on my bed

They are also cute, mischevious, loving, and supportive. They took care of me last week when I was so sick....well, I mean, they didn't bring me medicine, soup, or take my temp....but, they sure did snuggle up, kiss and love me, and keep me company while I was miserable!

Here are the pictures of them after digging a muddy swimming hole for themselves after 2 days of rain :).

Tools for Teaching

I use television as a teaching tool with my children. Particularly shows such as Grey’s Anatomy, Private Practice, and Boston Legal. I do this mostly with my 14 year old son, and explain that they often go for the extremes and dramatization for ratings. But, I can’t even tell you how many conversations have been generated this way.

I was blown away by my son’s insights this week which relate to my sister’s blog: thefairfax.blogspot.com and the response he had to a VERY similar thought process.

Drew’s school has been studying The Holocaust. An Auschwitz Survivor visited his school this week and spoke with them. He said that half of the football team was crying over the loss of this man’s family, the numbers tattooed on his arm, and the impact of him witnessing his sister’s death and the shooting of others. TRAGIC! I cried as he spoke about it! His eyes were red-rimmed as he was telling me.

Boston Legal had an abortion storyline this week. Drew and I discussed the issues and reasons for abortion. I explained that I don’t believe it should be used as a method of birth control and that if one has unprotected sex, abortion should not be the backup to condoms or other birth control methods. He understood and was thoughtful of that. Then it moved into “in cases of rape”. And, I brought up the issue of “medical cases” and “genetic testing”. When I related this to his sister with Cystic Fibrosis, the conversation floored me.

What if we had known before Ginny was born that this fetus had Cystic Fibrosis and was an expensive, time-consuming, emotionally draining disease and that we should consider aborting for medical reasons….
Drew’s response was “That’s just like the Nazis”. WHOA!!!! WOW!!! This 14-year old boy has been so stricken by the discrimination which was carried out against a group of people in a “long-ago” generation that he has applied it to his own life and is seeing it from his perspective in HIS generation. WOW…..

What a thought-provoking young man! Did I raise him? Did he really come from me? How amazing of an intelligent, sensitive young man! God, please, please keep his insight and sensitivity intact as he grows into a man.

Lane 4 is No More

And, this makes me sad......

Our cabin on the lake in Idaho has had the address of Lane 4 since I was born.....Hell...since before my Father was born. This lake has been an integral part of the Smetheram Family history since at least the 1920s. And, that cabin has always been on Lane 4.

To conform to modern times, the county decided we needed to change the name (I think it was for the purposes of emergency services, but I chalk it up to the government nosing in). We submitted names which had to do with Moose......moose have now become an integral part of Lane 4, so we thought that would be a great match.

Alas, the county shot down our moose....names, that is. Apparently, there are too many Moose-type names in existence in Kootenai County. I had some really great suggestions:
Evil Squirrel Lane - in honor of the squirrel which tortured my sister this past summer
Twin Moose Lane
Moose Lane.....but my Dad knew those wouldn't be accepted by the county. He proposed to honor the Quail which run around from the empty lot next to us, to the empty lot across the street. So, now it will be known as Covey Lane.

It sounds so trendy. How can I make fun of Lane 4, and the quaintness that is Idaho with the name Covey Lane? How sad that we are not able to honor the Moose of Twin Lakes!

At least The Lightning Bar is still there! Please do not take that away from our Idaho repertoire....

Here's to you, Lane 4! Cheers to you, Lane 4! Regardless of the Covey, you will always be 4th in my heart!

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.

OMG Life has changed

1/2 tank of gas.......that's IT!!!! In one week!!!

I used to fill my gas tank twice a week when I was driving the kids 12 miles south of my house to school, then drive back by my house and go another 23 miles to work. Now, the kids walk and/or take the bus to their schools.

My son came home yesterday and told me that he loves his new school, and really likes having different people in his classes. He's finding his way around, and all's good.

My girlie is doing great, making new friends, be-bopping around. She told me last night that there is a dance coming up in October.....ACK!

Life is good. Sometimes, it's the simple things that make a difference.

Fun In Florida

So, you've seen some of the pictures of the fun we've been having. Now, let me tell you about some of the other happenings.

Drew was going to spend the week in Tennis Camp at Heathrow Country Club. He had a couple of 1:1 lessons before the week started. He was invited to attend the Advanced Tennis Class instead of the regular camp. He's being worked so hard, he's come home exhausted each day, but has really learned a lot.

Ginny has turned into a mermaid. She swims non-stop, and has been loving it. She and Mimi have gotten to spend some time together. They went to see the American Girl Movie, shopping for books at Target. She picked out a book called "If I have a Wicked Stepmother, Where's My Prince?" Wow.....don't know what to say.....didn't know she was that interested in finding her Prince....

Me, I've had a cold and have been doing a lot of snarking, sneezing, and coughing. Oh well! At home in Maryland with a cold, or in the sunshine, by the pool in Florida with a cold??? I'll take it!!!!

Fairy Godmother, Pics

So much to blog about, and will do so later. I want to get the pictures up from our visit to the Fairy Godmother. It was so amazing and I started crying the second she came out the door, the crying hit another level when she started singing.
Our evening at Cinderella's Royal Table was AMAZING:
THE CASTLE:



Ginny was the Queen of the Castle and ran around taking pictures, laughing and loving it all. We got to take pictures with Cinderella before we were taken up to the dining room....
THE DINING ROOM:
The room was beautiful. A rounded room overlooking the Carousel, rich colors, chandeliers. But even better than the Dining Room was the show....
THE SHOW:
And, here's where the tears flowed. The Fairy Godmother touched my shoulder each time she passed, and my dreams really did come true that night.

The Fairy Godmother

Here we are, back in Orlando at my parents' house.
Tomorrow, we will go to the Magic Kingdom. After hanging around the park, we will attend a wonderful show at Cinderella's Castle. The kids will get their picture taken with Cinderella, but to us, there is only 1 star of the show........!

The Fairy Godmother! When speaking with her, be it in person or over the phone, there is an immediate sense of wonder and amazement! She can give you hope just by saying that she is there for you, as the Fairy Godmother. Not only is she the Fairy Godmother, she is my sister!

And, your sister does ...what??... for a living???

Not exactly swimming with the dolphins....

We arrived in Orlando on Sunday after visiting a most exciting place to eat. It's an old Sugar Mill at DeLeon Springs State Park http://www.planetdeland.com/sugarmill/sugarpage2.htm. The tables have a griddle in the middle and you can make your own pancakes...and eggs. They bring out 2 different kinds of batter, stone ground and all purpose flour. You order toppings as desired. We ordered bananas, blueberries, and chocolate chips. It was a fun thing to do with the family!!!!

Drew has spent the week at tennis camp at Heathrow Country Club where my Dad is a member. He's been the man to beat this week and I'm sure that's been great for his ego! He's sooooooo tan, and looks really great as he builds his muscle and "hot guy" status.

Ginny and I have been hanging out by the pool, swimming, reading, relaxing. I did get a manicure/pedicure.......ya like?????

What? What is that you say? It looks like a lizard on my hand? Well, yes....yes, it is. There are many, many lizards around my parents house. The baby ones are very cute and much fun to swim with. We named this one Maddie. We've caught her a couple of days in a row to take swimming with us. She seems to be responding to her name now.

Swim with the Dolphins - Part 2 & 3

So, after riding the dolphins' noses across the pool, we snorkled around the cove with them. I don't have pictures of that, but it was a weird experience. I am not proficient with the snorkel. It made me gag and feel suffocated so I wasn't able to swim face down for more than a minute or two at a time.

The third part was interacting with the dolphins. We learned a lot of information from the trainers as we touched them while they swam by. We avoided the blow hole when they swam by, and learned where on their bellies to touch and where not to touch as they rolled over. Note: Avoid the genitals....always good advice.

It all culminated with hugs and kisses. Julian was the kissing dolphin seen in the pictures below. The hugging dolphin was a female whose name escapes me at this time.....I'm sure Ginny will remember.

Swim with the Dolphins - Part 1

We signed up to swim with the dolphins while we were in the Bahamas. The experience was divided into 3 sections. For all sections, we wore a wetsuit, and had mask & snorkel gear on hand.

First, we were pushed across the cove by dolphins. We had a kickboard which we rested our upper body on. At the trainer's command, 2 dolphins came up quickly behind us and connected their noses with our feet, and propelled us across the cove!!!! WOW!!!! It was fast, the noses were harder than I thought. I struggled to aim myself, Ginny screamed with glee the whole way across, and Drew was cooler than cool!!!!

Bahamas Time

Okay, Let's cheer it up a bit....it's time for the Bahamas!

We arrived on Tuesday evening. It was windy, but sunny, and perfectly palm-treed. Ginny and I went exploring while Drew fell asleep.
There were tons of pools of lovely sea life. Most with underground walkways, tunnels, and viewing areas. We saw some really cool stuff!

On Wednesday, we woke up and headed for the wave pools, slides, tube rides, and amazing fun around the Atlantis resort. The kids went on a ride called "The Leap of Faith". This is a slide which drops straight down into a tunnel which goes through a pool of sharks!!!! See the picture? That's Ginny on the slide......... Drew went too fast!!!! That ride was at the Mayan Temple which also had a tube ride which went into a tunnel in a shark tank. I tried that one because I'm not much for leaping!!!

More Bahama fun to come!