by Sarah | Nov 18, 2015 | All About Denver, All About Kennedy, All of Us, Cystic Fibrosis, Redefining Perfect, Special Needs
Six months ago we were hit with a disheartening blow to our years-long CF journey.
The pulmonary doctor we’ve had from the very start of our journey was transferring all her patients on to new doctors. With plans to retire very soon, it was time to transfer her last six patients to their new forever homes. My two kids included. So, at our last appointment we met our new (highly recommended by Dr. A) doc, Dr. M.
Change isn’t easy. We were suddenly reporting on a Tuesday instead of a Wednesday. Dr. M, while perfectly nice, was making all of these suggestions and recommendations and this and that and I was honestly panicked.
Mostly because he wanted to do a complete, total, sweep of the CFTR gene on K.
In my blind, “this is so different, I don’t know, so I’ll smile and nod” moment I did just that. I smiled and nodded.
Yesterday we returned for the next appointment and this time, not so new, it was a little different. We spent some time with Dr. M, and the respiratory therapist and got a better feel for what’s going on.
And so we set new plans, a new direction.
My biggest concern with the genetic tests was addressed – would we lose the CF diagnosis, and therefor the vital insurance we desperately need for treatment?
No. Because of positive sweat tests and concurrent symptoms, their diagnosis of CF will remain no matter the results of the full genetic sweep (which is, blessedly, being covered by the fantastic CFF not just for Kennedy, but for Denver as well).
Then we moved onto Kennedy’s current status. Though her weight is at an excellent place right now for a change, her functions are not. She has maintained for years just fine, but Dr. M wants to do more than maintain. He wants to attack…and so…
With her functions the way they are, there is definitely some sort of obstruction, and he wants to find it. There will be a chest CT.
There will also be another functions test for before and after albuterol to see if there is any asthma-like influences, and she’s being put on a nasal steroid for her constant sniffles.
We’re fighting insurance for a new vest system (with the doctor’s help) since hers is old and been beat up by destructive toddlers. She will be on an increased vest rotation and possibly new meds (hypertonic saline) which will require new equipment.
Basically we are now fighting to push forward and move beyond basic maintaining and into full blown attack mode.
It’s terrifying and exciting.
I don’t know what’s happening in the future, except increased appointments and testing for the little one, but I do know that something is happening.
Change is scary, but this is proof it isn’t always bad.
And that first impressions aren’t everything.
by Sarah | Oct 8, 2015 | All About Denver, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Cystic Fibrosis, Disney, Make-A-Wish, Personal, Redefining Perfect, Special Needs
The past four months have been chaotic and filled with a secretive sort of excitement.
Denver has us keeping a rather large secret from the girls.
We are returning to Disney this fall!
I have been scrambling for dining reservations, suitcases, and other necessities that I have to sneak into the house and hide from the girls.
Because they do NOT know.
Part of Denver’s wish at Make A Wish was to keep this whole thing a big, fat, humongous secret from his two little sisters.
So we are whispers, sneaking, and super secret planning and count-downing. Texting ideas instead of saying them out loud.
Oh, we’ve nearly been caught several times…but any time the girls hear Disney or we discuss anything in front of them, it’s “in 2021”. (For the record, we are planning a trip in 2021 that will be larger in scale and involve good friends along for the ride)
2021 is a great cover story when we get caught.
But we are going back…and the teen and I are making a serious effort for real planning.
We have secured all the reservations we REALLY wanted (getting into the parks early! Yay!). We’ve scoured maps and discussed what was missed last year and will not be missed again. We’ve supplied ourselves with a bunch of pins for trading (and keeping!!). We’ve watched and re-watched all the Disney shows to be had (thank you, Destination America) until our DVR broke.
In 20 days from now, a limo will arrive bright and early while the girls are still in bed. We will have everything packed and ready to go and we’ll burst into the girls room yelling that they’re late for school and rush them outside to the waiting limo!!
The excitement is palpable.
The countdown is a way to get us through the rough days.
And there have been a lot of them these days.
Thank goodness for the mouse.
by Sarah | Sep 3, 2015 | All About Family, All About Kennedy, All of Us, Disney, Make-A-Wish, Redefining Perfect
Kennedy had never been to a theme park before.
Ever.
No roller coasters. No thrill rides of any sort.
Day one at Universal – she rode ALL the roller coasters.
We started with Escape from Gringotts and from there…IT WAS ON.
Every possible thrill ride she could go on, she did. She got MAD when she wasn’t tall enough. She wanted to ride them ALL!
Flight of the Hippogriff? Check. Dr. Doom’s Fear Fall? CHECK! If it spun, flipped, soared, fell, or raced, Kennedy was on it.
The thrills continued at Disney World. First day, first ride – Space Mountain. Kennedy and I rode it twice. The Rockin’ Roller Coaster was another huge hit.
By the time we left Disney we’d bought Kennedy a shirt that declared her a “Thrillseeker” because holy cow was she ever! This child LOVES being scared.
When it came to the Dragon Challenge at Universal – she was not tall enough. She was SO MAD. She actually forbade Erik & I from riding it (we did anyway, because DUH)…and has since insisted on regular measurements to see if she’s tall enough yet for the ride. Even though she’s going to be 14 the next time she’s aware she’ll be going again, she wants to know the minute she’s tall enough for that ride (for the record, she broke the height requirement in August).
So watch out…our little thrillseeker is ready to take over the world and every single theme park ride you can throw her way…because she’s ready to take them all on.
by Sarah | Aug 24, 2015 | All About Kennedy, All About Me, All of Us, Crap, Random, Redefining Perfect
We’ve all seen the TV show, seen the urban-legend like tales of women that didn’t know they were pregnant. Most of us, especially those that have been pregnant, all say “No way. But, how?”
I sure felt that way for years. I mean, with Denver I had symptoms before I knew. With Molly, I didn’t really have symptoms before I knew, but after a couple of weeks it hit me. In my first pregnancy I got huge, there was no denying something was going on. With my second, the distinct basketball at my waistline was a rather clear clue.
I sure never thought anyone could miss the fact they were pregnant.
Until it happened to me.
When Molly was born, Erik & I agreed that was it. Two was our limit. Financially and space-wise (TINY house, have I mentioned?). We were done. Finito. Kaput. I was breastfeeding, had the pill and we took every precaution we possibly could. Well, just about. At no time in our lives was there any less than 3 forms of birth control happening – and with a new baby in the house sleep was often a more precious commodity than alone time (You know that commercial where the couple gets a hotel room and the second the blinds are closed they pass out instead of sexy-time? Yeah…sort of like that.)
At four months of age, Molly’s silent reflux came to the forefront, as did her FTT. I (stupidly) stopped breastfeeding by her (stupid) pediatricians advice and switched to formula in a desperate attempt to have her gain weight (what a stupid, stupid thing…but that’s a story for another day).
All of the health care visits for Molly kept me busy. I was working as a waitress at nights. I was busy, tired, not paying much attention whatsoever. Life was nuts.
Once in a while I got an odd pain that I swore hit right on my cervix – which was really odd considering my status as a non-preggo mom of two.
In December 2005 I wrote the following on my LiveJournal (remember those days?) entry:
I feel pregnant still/again. Nearly 100% sure I’m not…because it would be almost physically impossible to be…and if I was, I’d be about 6 months along right now and a bit bigger than I am…so I think I have another cyst. Probably pretty nasty too, because when I was taking a bath the other night I realized one side of my abdomen is relatively solid. There’s definitely something in there. I’m still 10 lbs. above pre-preggers weight and I don’t eat a ton…I eat like I always have. My boobs are still a cup size over pre-preggers and leaking…and I’m moody as Hell…I’ve started getting the sharp pains around my ovary area that I got when I had my last one…but they aren’t as frequent.
Weird, right?
What did I do about all of the oddities?
Not a damn thing. Not for a month.
January came and around mid-month another really odd thing happened.
5:30AM January 17th. No school, Erik didn’t work, I didn’t work until about 5:30PM. All was quiet.
My eyes flew open. I was wide awake.
Mind you, I am nowhere near a morning person – if I do wake up at that time I’m usually half dead. But nope, not that day, I was wide-eyed-pie-eyed.
I set my hand on my stomach and said, “What the hell?”
For a split second I’d thought I felt a baby move. You know, the butterfly wing-touches.
Once again, did I do anything?
Nope. I blew it off as GAS. Yeah.
Another two whole weeks went by before I finally decided to just pick up a pregnancy test at the grocery store to shut up that weird nagging voice in the back of my head.
Because really – there was no way I was pregnant.
Right?
Test came up positive.
I freaked the hell out. Crying rivers of tears. We couldn’t afford this. We didn’t have room. I called Erik at work, sobbing and asked him to come home. I kept telling him I couldn’t say anything over the phone but he forced it out of me, and he was home twenty minutes later.
Despite the positive test in my hands, I still didn’t believe it. I called the doctor’s office and his fabulous nurse told me to come in first thing in the morning for the blood test. I had to wait another 24 hours before that amazing nurse called me before thy even opened to give me the results. I was, in fact, pregnant. She then said…
“Let me see if we can get you scheduled in about 4 weeks from now. By these numbers I’d say you’re very early, about 4 weeks.”
My response was immediate protest.
“No. You don’t understand. My first symptom was the baby kicking. I’ve felt it move. I’m sure I’m way beyond 4 weeks along.”
In surprise, she agreed we had to get in for an ultrasound ASAP.
4 days later I found out I was having a girl – on the very first ultrasound.
I was 23 weeks.
She was born at 36 weeks.
The doctor said I set a speed record for him in pregnancies.
In my defense, after this visit my pregnancy did far more than set a speed record. It was like the minute my pregnancy was confirmed my body took it as a big thumbs up to REALLY let loose.
I had SEVERE pain (Pubic Symphysis Diastasis) – so bad I couldn’t roll over in bed at night. I blew up and looked pregnant within a week (I hadn’t up until then). I was put on modified bed rest within a month of my ultrasound – true bedrest when I went into pre-term labor at 35 weeks (lifted @36 weeks). It became almost a nightmare once I knew I was pregnant…
But for 23 weeks I didn’t know I was pregnant!
The results were so worth it, though.
I mean, what would we do without our crazy, cooky, stubborn angel?
by Sarah | Aug 13, 2015 | All About Denver, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Blogging Life, Disney, Make-A-Wish, Redefining Perfect
As if it wasn’t clear yet by my bevy of posts – we had an amazing time at Disney and Universal in Florida. I have only scratched the surface of the stories to tell, and best we’re going back in a couple of months to make some new stories.
However, for all the wonder and fun we had, there were a few hiccups in the road.
Our first few days, the three final days of October, were gorgeous. Beautiful weather. Low 70’s, sunny, low humidity. Just flat out amazing.
Then November 1st dawned.
A high of 47 degrees and strong winds. I mean, strong.
So we put on our jeans and returned to Universal for our last day with one thing in mind…well, for Erik and I.
The one ride we’d missed on our first day. The Rip Ride Rockit Roller Coaster. Erik had been intimidated by it, but after a few days of roller coasters, he was ready to try the intimidating coaster.
Yeah.
Remember that detail about the weather?
Strong winds?
The ride was closed. Because of the high winds, and the intense height of the coaster, it wasn’t safe to run that day.
Of course we still had plenty of fun that day, but we were sorely disappointed that we’d missed this ride.
And yes, we’ve already said that the first ride we go on this year is the Rip Ride Rockit. We aren’t chancing another turn in the weather.
by Sarah | Aug 6, 2015 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Me, All About Molly, All of Us, Blogging Life, Disney, Make-A-Wish, Redefining Perfect
For two of the kids there was one park that was a hands-down favorite.
Epcot.
Molly absolutely loved the world showcase. Perhaps because there weren’t any rides she was too afraid to go on. She loved seeing the different countries and meeting the Princesses in their areas.
Denver loved the rides (and is mad, like me, that we totally missed a few), and the world showcase was top notch for him. He liked exploring and seeing all the different things to offer. His biggest regret is that we missed the one Disney Princess he would have agreed to get a picture with – Mulan.
But, what we all loved, unanimously, best about Epcot is situated right in France.
It has been my favorite place since my first trip to Epcot, and remains so today. I cannot wait to go back, and plan on budgeting a bit more money for more sweets than last time. They were so good, and I could totally bring them back with me to the villa. 😉
We bought four whole desserts last time, and scarfed every single one of them down. The favorite was, of course, the macarons. Light, airy, and so packed with flavor in every bite. I think I ended up with the vanilla, while the kids got the blueberry, raspberry and chocolate.
I think the kids and I totally ignored lunch that day and just pigged out on desserts. Poor diabetic hubby didn’t get to share in the joy as much, and was disappointed that all of their sandwiches had sauces (he doesn’t like sauce on his sandwiches). But, he satisfied himself with other treats as we were there during the food and wine festival.
Anyway, we’re already prepping our menu for next time, and seeing as my parents will be with us, it’s going to be quite a to-do, I’m sure. I might even actually get a sandwich this time, there were so many that looked good…but really, the whole point in going there is for the desserts. I can snack all day in Epcot, but here I get serious and sit down and really dive into the sweets.
Six months ago we were hit with a disheartening blow to our years-long CF journey.
