Are You Frickin’ Kidding Me? An Aug/Sep Surprise Trip... (12/01) Hakuna Matata

[ForeverDance]

Happy to hear she is feeling a little better.

Stupid croup it's hitting our area hard too, I know a few people who have been to the ER with it recently!

Sending positive vibes and well wishes! And hugs

Thanks for the positive vibes. I spoke with Grumpy earlier who said she was feeling up to doing her breathing treatments today (yesterday we had to go back to chest percussion). So that's already an improvement.

Glad PrincessK's lungs are healthy considering her diagnosis. My DD6 has not yet been to WDW, although we have been to Disneyland with her and she and I went to Paris Disneylans in 2014 for a day while visiting relatives in the UK. We took the train from London to Paris and my FIL, DD and I went. I can't wait we surprise her in 5 day or 120 hours but who's counting. It will be an adventure for sure. when we went to the UK we took the ferry from Victoria to Vancouver and flew from Vancouver. This time we fly from Victoria to Vancouver to San Fransisco to Orlando. Back home we fly Orlando to Ottawa to Vancouver the Victoria. She was great on the UK flight slept 6 of the 11 hours!

Wow what a great traveler. I hope she does as well on the flights to Orlando.
Do you have anything special planned for the reveal?

My husband likes to call preschool the germ factory. I hope she feels better soon.

PrincessK's clinic actually suggested that we not put her in daycare for exactly that reason. I think they might even have used those exact words. We were lucky that my mom took an early retirement and watched her for us so Grumpy and I could both work.

But school is unavoidable. Hopefully she will come out the other side with a better immune system.

Your day at the beach sounded fun. I hope you have more fun at the beach before heading to Disney World.

Well we did have one more day left at Cocoa Beach... you'll have to stay tuned to see how that works out

 

[DisneyJo]

I'm so sorry PrincessK is still ill, I hope the meds work quickly!

I love your DD's reaction to sand, it's so cute and I love the idea of a shell bag

 

[DonnaBeeGood]

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[pkondz]

She did eventually start eating last week and we were even able to drop all her meds back to normal... it lasted 3 days. On Saturday she woke up with a mild fever which got worse as the day went on. She dressed in her costume and I allowed her to do the houses on our small court but that was probably a mistake even though she was only out for 15 minutes.

By 8pm her fever was over 102F.

Oh, wow. I feel for you. Never any fun for a parent.

We spent the night with her coughing and crying. It was a very long night. In the morning her fever was almost 104F and her cough was horrible. We called the respirologist on call and were lucky that she is a fellow of PrincessK's doctor and knew who we were. She saw us and we determined that PrincessK had croup which is apparently running rampant in our city right now.

While not wonderful for her to be sick, I'm sure it was a relief for you to get a diagnosis and treatment plan.

On the up side. We gave her the steroid yesterday and within a couple of hours the cough had improved enough that she actually got a few hours sleep.

Thank goodness.

Her clinic did warn us that she would probably end up sick a lot when she first started school. I guess they were right

Yup. We anticipate the beginning of illness season, every September.

Now going back to read the update.

 

[pkondz]

On this particular morning when I felt something stir beside me I had no trouble at all remembering that I was sharing a bed with PrincessK… she spent the entire night snuggled right up next to me.

Awwww....

If I moved over, she rolled over to join me.
If I gently pushed her back over to her side, she rolled back my way.
Each time I tried to claim some space for sleeping she would return and snuggle in closer.

When I finally conceded the battle she was snuggled up so close that I had to tilt my head up to make room for her under my chin.

It did not make for a restful sleep.

I retract my previous comment.

The IHOP we were going to was only around the corner so it should have been a 2 minute drive… it took 10 full minutes

Oh, no! 10 minutes! What will you do to make up for all that lost time!

A series of construction barriers and badly parked vehicles caused us to have to drive around in circles until we finally found a way in through another restaurant behind the IHOP. It was pretty ridiculous.

Well, okay. I can see how that might've been a tad frustrating.

I encouraged PrincessK to try the regular pancakes since she hadn’t eaten much of the chocolate one the day before.

She did… and ate almost none.

Whoops!
Does the kid ever eat?!?

I took PrincessK with me and when we got into the stall I pulled out a sticky note to put over the sensor for the automatic flusher. As I was installing the “flush prevention device” PrincessK piped up with “I wish I was as big as BGirl when she went to Disney World because then the potty wouldn’t flush on me… and also I could go to Disney World.”



I was very grateful that my back was towards her.

Close one! Did your heart skip a beat?

Luckily PrincessK was so involved watching The Croods that she never looked up from the iPad and completely missed them all.

The benefit of in-car entertainment.

At 11:25 we reached Orlando and my heart skipped a beat a little… we were so close.



And then we weren’t.



Because it was Sunday and our Disney check in date was Tuesday.

Whoops! Maybe drove faster than you were planning?

At around 12:35 we arrived in Cocoa Beach and proceeded down the main street to the Four Points.

“Kinda busy here eh? They might not even have a room for us.”

Ah Grumpy, the eternal optimist

No reservation?
I don't know if I've done that in the last decade or so.

“I can see a room here that I think is available but I’m a little confused about whether it’s ready or not. I need to check with the manager one sec.”

He left and returned. Alone.

Young man: “It’ll just be a couple of minutes. Sorry about this.”
Me: “Oh no worries.”

Pins and needles. Will you? Won't you?

The manager turned to the young man again. “Go ahead and put her in that junior suite… for the standard rate.”

She turned back to me. “Thanks again for all your patience. Have a great stay.”

Wow. Pixie dust already and we hadn’t even made it to Disney yet!

Nice!!

A great little sitting area

With pull out couch? Or no? Or you didn't bother with it.

Our room actually looked out into the hotel shop which was pretty neat. Right below us was the hotel restaurant which had a shark tank and we could see them swimming around from our window.

Cool!

Our first stop was the beach. PrincessK had never seen the ocean and she was so excited.

I remember my first look at it. It just goes on forever.

By the time we got there she was bright red and very sweaty.

Well, that didn't take long.
But she's having fun, right?

I handed her a cup of Pedialyte and helped her remove her shoes. She jumped into the sand and stood there for a few minutes squishing it in her toes.

This just makes me smile.

“Mommmmmmaaaaaaa….. look a shell”

Perfect! I'll bet she was happy with that!

One of the side effects of Cystic Fibrosis is that it causes the person to sweat more and when they do they lose a lot more salt than a “normal” person. Seriously, don’t ever kiss a kid with CF on the head when they are sweaty… especially if you have chapped lips

Did not know that.
Thanks for the tip!

(I admit it, we eat way too much pizza at home)

But it's sooooo good!

While Grumpy and I were chatting PrincessK reached across the table, grabbed the salt and dumped a bunch on her placemat.

Yep. She was clearly in need of some extra salt.

Whoa! You're not kidding!

One of the interesting things I have found is that PrincessK’s body does a good job of letting her know when she needs extra. When she’s low she seems to crave it so once in a while she’ll ask for straight up salt and it’s usually a good indication that she’s lost more than we realized.

That's, well... kind of incredible, actually.

Lunch was fine and the air conditioning was heaven. It felt so good in fact that I had almost forgotten just how hot it was… until we walked out the door.


BAM!


Ever walked into a sauna? Seriously that’s what it felt like.

Oh, yes. I remember that all too well.

Love that shot.

Since we had promised PrincessK that we would get up early and search for shells the next morning we figured something to put them in would be a good idea. Sure we could have used a plastic bag but the mesh bag would allow me to wash them out when we got back to the hotel without risk of losing or breaking them.

Good idea. I never thought of that.
Mesh bag? We don't need that! A plastic bag is fine!

At the time I thought it was a waste that she spent her vacation money on something she could probably find back home but I have actually never seen “Maddie” anywhere else, so I guess it was a good thing that she got her when she did.

Never a waste of money.
I thought the same thing, but they associate them with where they got them.
At least my girls did.

The rest of our night would have been pretty uneventful except that PrincessK was crazy. The kind of crazy that happens when a child is overtired. The kind that makes you want to strangle them a la Homer Simpson.

Oh boy.

Getting her to eat was a challenge.
Getting her to do her breathing was a challenge.
Even giving her a bath was a challenge... she splashed and threw water ALL OVER THE BATHROOM.

Did mom come this close to losing it?

By 6:30 we’d had enough and put her to bed. She tossed and turned and sang for a while but was finally asleep by 7:15… not too bad considering how crazy she was acting.

Not bad at all.

We got about 10 minutes in before I started drifting in and out of consciousness. Eventually I was more out than in. I woke just before the episode ended but had no idea what had happened.

 

[ForeverDance]

Another PrincessK Update

Yesterday when I woke up I already knew I was going to have to call PrincessK's clinic because she was still coughing up a whole lot of mucus. As I was leaving for work my mom came running out of the house, kleenex in hand, to show me that PrincessK had coughed up mucus streaked with blood

I calmly told my mom "Oh it's probably just from her throat. Go ahead and send her to school, she still seems to be feeling okay otherwise". Then I went on my way to work all the while internally screaming "OH MY GOD SHE COUGHED UP BLOOD"!

Sure, it was actually very reasonable to assume it was coming from her throat, which had been sore, or even from her nose which had been plugged, but still my 4 year old was coughing up blood streaked mucus... that was not normal.

I eventually got a hold of her clinic who suggested the blood was more likely from her throat or nose than from her lungs. However they also decided that given her symptoms she clearly has a respiratory infection

Yesterday she ate nothing all day and was in bed by 6 pm. I am really hoping that the medication works and she will be feeling better soon.

... and speaking of medications... PrincessK had a rash develop when she took one antibiotic when she was younger. So she has been flagged with a possible Keflex allergy. Unfortunately Keflex is also in the same family as Penicillin so she has to avoid that as well. This leaves them with one antibiotic choice.

They have decided that because of the continued infections, and the fact that the only antibiotic they can currently prescribe is not the best, they want to have her officially allergy tested... so we have that to look forward to

 

[ForeverDance]

I'm so sorry PrincessK is still ill, I hope the meds work quickly!

Thanks. She's actually still sick... but you can read about that if you want in the PrincessK update.

I love your DD's reaction to sand, it's so cute and I love the idea of a shell bag

It was pretty cute. I wasn't really expecting it because we had been to a beach before but then I realized just how different it feels.

I wasn't actually going to by the shell bag but after discussing it with Grumpy we decided to go ahead and get it.

Wow, glad that Princess is starting to feel a bit better. I had no idea about the CF connection with sweating and electrolytes - good to know.

It was definitely not something I was aware of before we had PrincessK... actually I knew almost nothing about CF before her diagnosis.

I think I'd be just as hyped after a long car ride - the twitchies start to get to me! And I'd want a relaxing night back in that nice room too!

It seems almost counter-intuitive to walk to sit in a room after sitting in a car, but we were so tired and we just wanted to stretch out and relax.

While not wonderful for her to be sick, I'm sure it was a relief for you to get a diagnosis and treatment plan.

It was. Until it wasn't. You can see what happened in my latest update.

I retract my previous comment.

It was sweet that she wanted to be so close. And from the outside it probably looked really cute but the realities of it were just not as cute. It's kind of like how movies always show couples sleeping with the wife all snuggled up on the husband's chest. Seriously? That does not actually work in real life!

Oh, no! 10 minutes! What will you do to make up for all that lost time!

I know
But it just seemed so long when we could see it the whole time but just couldn't get there. It would have been faster to leave the car parked at the hotel and walk over... which is what we were about to do when we found the "secret" way in.

Whoops!
Does the kid ever eat?!?

Close one! Did your heart skip a beat?

It sure did. I was in complete shock. Normally I'm pretty good at rolling with things and moving on without her noticing but I don't think I could have kept it off my face when she hit it so close like that.

No reservation?
I don't know if I've done that in the last decade or so.

We make reservations for out destination, but almost never for stops along the way. Grumpy changes his mind so often that I just don't bother anymore. I figured if we couldn't stay there we'd just find another one.

With pull out couch? Or no? Or you didn't bother with it.

You know, I'm not sure I ever even looked. It would have been smart though. Then PrincessK could have slept there and I could also have had a bed to myself... next time.

Perfect! I'll bet she was happy with that!

So happy. I actually have a jar of shells on my dresser at home that came from Cocoa Beach. Every once in a while she asks to look at them. She was pretty excited to have found her very own shell.

Did not know that.
Thanks for the tip!

But it's sooooo good!

Grumpy and I think so... PrincessK? Not so much. Only kid I know that doesn't like Pizza. She does like the stuffed crust though so she eats that and sometimes some of the meat off the top... when I can convince her.

That's, well... kind of incredible, actually.

It really is. Another CF mother online mentioned that her kid did that and I thought it was kind of crazy at the time. But now I've seen it in action.

Oh, yes. I remember that all too well.

It's funny I was reading your last update and I was thinking "hey that's the same day I'm writing about... man it really was hot that day".

Love that shot.

Me too.

Good idea. I never thought of that.
Mesh bag? We don't need that! A plastic bag is fine!

That was my first thought. Then I showed it to Grumpy and we talked a bit and that's when we decided to go ahead and get it.

Did mom come this close to losing it?

 

[Stefy]

Joining in and loving everything so far. Love your surprise reveal idea, very clever.

PrincessK is just too cute, I hope she starts to feel better soon

 

[pkondz]

Yesterday when I woke up I already knew I was going to have to call PrincessK's clinic because she was still coughing up a whole lot of mucus. As I was leaving for work my mom came running out of the house, kleenex in hand, to show me that PrincessK had coughed up mucus streaked with blood

Oh, man! Not more!

I calmly told my mom "Oh it's probably just from her throat. Go ahead and send her to school, she still seems to be feeling okay otherwise". Then I went on my way to work all the while internally screaming "OH MY GOD SHE COUGHED UP BLOOD"!

I honestly don't know how you kept it together.
I'd be more like:

I am really hoping that the medication works and she will be feeling better soon.

Sure hope so! It usually takes 2-3 days (in our experience) before you see any improvement.

They have decided that because of the continued infections, and the fact that the only antibiotic they can currently prescribe is not the best, they want to have her officially allergy tested... so we have that to look forward to

I think that's a smart idea.
Yeah, who wants more medical tests, but in the long run...

It's kind of like how movies always show couples sleeping with the wife all snuggled up on the husband's chest. Seriously? That does not actually work in real life!

No kidding!
"Would you move!!! You're foot is touching my leg! You've got a whole half of the bed! Stay on your side!"

We make reservations for out destination, but almost never for stops along the way.

Haven't done that in forever.

But... plan on doing that (or close to it) in the (hopefully) not too distant future.

You know, I'm not sure I ever even looked. It would have been smart though. Then PrincessK could have slept there and I could also have had a bed to myself... next time.

I'm surprised you didn't!

So happy. I actually have a jar of shells on my dresser at home that came from Cocoa Beach. Every once in a while she asks to look at them. She was pretty excited to have found her very own shell.

Awww...

It's funny I was reading your last update and I was thinking "hey that's the same day I'm writing about... man it really was hot that day".

Yup. Flames would've been cooler.

 

[DonnaBeeGood]

.

 

[irene_dsc]

Feel better soon, Princess K! Coughing up blood has got to be scary! I hope the doctors can help soon!

Add me to the list of people who know very little about CF - I'm definitely learning from your TR.

 

[tabrizia]

Poor Princess K and yes I can totally understand privately freaking about coughing up blood.

 

[ForeverDance]

Real Life Update... A Positive One This Time!

Sorry I haven't been around in a couple of days. As you can imagine it's been pretty hectic at the house. Thursday night I had to call PrincessK's clinic because I was at my wits end. She hadn't eaten anything but a handful of grapes in two days and Grumpy and I were seriously worried. They assured us we were doing everything right and suggested that we focus on hydration and just let her eat whatever she wanted. They also suggested that her throat might still be bothering her so give her Advil/Tylenol and see if that helps.

She stayed home from school on Friday and drank ginger-ale and ate grapes. At least the ginger-ale had lots of calories.

Saturday I bought cookies and used those to "encourage" her to eat. Over the next couple of days she started eating more and more and on Sunday she actually had enough energy to jump around and seemed much more like her normal self... something I hadn't seen in about a month.

She still has a bit of a cough but it's much better than it was and now that she's eating I am feeling pretty confident that she's got this thing licked

On Sunday PrincessK and I took part in a photo shoot. The photos will be used for the Great Strides walk campaign in Canada. It was actually a lot of fun. The photographer sent me a single image (because technically the photos he took will belong to CF Canada). I think it's pretty cute.

When I get the officially branded ones I share some of those if I can.

 

[NJlauren]

So happy you are all on the mend! That picture is amazing!

 

[kaileighbug]

That is great that she is feeling so much better. Love the picture and that smile!

 

[ForeverDance]

Joining in and loving everything so far. Love your surprise reveal idea, very clever.

Thanks for joining in.
I really enjoyed making the surprise letter. It did take quite a bit of time to get it all laid out nicely but it was totally worth it.

PrincessK is just too cute, I hope she starts to feel better soon

Thank you!

I honestly don't know how you kept it together.
I'd be more like:

Believe me, that's what I was doing internally.

I think that's a smart idea.
Yeah, who wants more medical tests, but in the long run...

Oh I know it's a good idea. I even asked them about it before but right now it's just bad timing. She's been so sick and through so much I just don't want to put her through any more right now. But, it is what it is, and it's important.

Haven't done that in forever.

But... plan on doing that (or close to it) in the (hopefully) not too distant future.

Gee that wasn't the least bit vague

Poor Princess K! Feel better soon, you little cutie!

Thank you! She is definitely starting to feel much better now.

Feel better soon, Princess K! Coughing up blood has got to be scary! I hope the doctors can help soon!.

It was really scary... for me. She didn't think much of it. She actually did it again a day or so later and said "hey look Momma I got more blood". She wasn't concerned at all.

Add me to the list of people who know very little about CF - I'm definitely learning from your TR.

I really didn't know much about it before PrincessK's diagnosis. I have an aunt who actually worked in the CF clinic and through her I knew a bit... just enough to be completely terrified when they called to tell me she had screened positive.

Poor Princess K and yes I can totally understand privately freaking about coughing up blood.

Yeah it was pretty scary. I had to keep reminding myself to be calm.

 

[sunshinemelody]

That's awesome! Yay, so happy to hear that your little one is feeling a whole lot better!

That photo is absolutely precious. The smile on her face is adorable.

 

[pkondz]

Gee that wasn't the least bit vague

Sorry about that. Just a vague idea I've got percolating in the back of my mind.

So happy PrincessK's feeling better! Phew!! What a relief!
And that's a really nice photo of the two of you!

 

[DisneyJo]

I'm so pleased she's feeling much better and that's such a cute photo

 

[Stefy]

Glad to hear that PrincessK is on the mend and back to her normal self. I can't imagine how you guys must have been feeling.

The photo of you two is just precious, beautiful mother daughter shot