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

[tinkbell13]

Joining in! Just finished reading your trip so far and can't wait to hear about the rest. I love surprise trips and wish we would have done that when we took DS on his first trip in 2008.

Also, hi fellow Londoner! (where did that waving smiley go?) When I started reading your report, I thought it sounded like you lived close by. We also drive when going to WDW. Our friends think we are nuts, but we love seeing everything along the way.

Again, can't wait to hear about the rest of your trip!

 

[mya1k9]

I just found your trip report and loved it. Please finish it!! Want to hear how B girl likes it!!!

 

[clayfolks]

I just found it, too. Please come back. I've spent the evening enjoying your writing and need more...
Thx!

 

[vikster1]

Hope all is well with PrincessK.

 

[bkoyle]

Thanks for the TR. The most interesting TR that I have followed so far!

B

 

[jrabbit]

Oh man, we are not going to get the rest of this story are we

 

[Shelbizzles]

Oh man, we are not going to get the rest of this story are we

I have a feeling we won't

 

[dcraythorn]

I was so hooked on this...But I don't think we will either.

 

[ForeverDance]

Real Life Update… Yes We are All Still Alive

I don’t think I realized just how long I’d been gone until I got the notification today that someone had posted and I popped in to see what was being said.
Honestly, I thought you would have all forgotten about us by now.

I didn’t realize that there were people who were really invested in our story which makes me feel both all warm and fuzzy instead and completely terrible at the same time.
I swear that I didn’t mean to walk away from the report and abandon you all... it just kind of happened.

First, this happened.

Our computer happens to be in the upstairs area where this renovation was taking place so it had to be disconnected for a few weeks.

During that time this also happened:

Yep. We made another trip to Disney.
This time with my cousin and her family. It was an… interesting trip. Very different when you are travelling with another family.
Of course it IS Disney so we had a great time. Despite being chased back home by a hurricane.

We got home on the Friday of the Labour Day weekend and the next day BGirl dropped a huge bomb on us: she was cut from her basketball team on Thursday

I felt terrible for her.

We moved her in to her dorm the next day and then spent the next week back and forth on the phone trying to figure out what to do. Another team wanted her, but it would be playing at the college level and the tuition was a lot more. In the end, since she only went away to university because of basketball, we encouraged her to make the very difficult choice to come home and take some time to figure out who she is.
That has been a tough road for her. She has been “BGirl the basketball player” since she was 12. It was a part of her identity. Now that she isn’t playing, she doesn’t know who she is. It’s been hard to watch her go through this identity crisis and it’s not over, but slowly she is working though things and figuring out where she wants to go. At this point she knows that she doesn’t want to go back to university but she’s not sure what she does want to do. For now, she’s working full time at Tim Hortons (how very Canadian eh?)

The week after we moved BGirl back home, PrincessK had her quarterly CF clinic. Which went really well… until the following week when we got the call that PrincessK had cultured pseudomonas

In case you don’t know what pseudomonas is (and really why would you?) it is a bacteria that is found “everywhere”. It is typically not an issue for the general population but for people with CF their mucus provides the perfect breading ground. It is the most common form of bacterial infection in CF patients that leads to chronic infection and lung deterioration… so not good.

It is also very difficult to eradicate.

As a result PrincessK has been on a regimen of twice daily inhaled antibiotics. This has been a pretty big strain on us since the timing of the treatment with regard to her other physio has changed all of our routines. Poor PrincessK is losing about 1.5 hours of sleep every day over what she was getting before.

Some night’s she’s just so exhausted.

This treatment was originally prescribed for 1 month after which she was re-tested… and cultured it again.

Then on to 3 months. Retested at last clinic… and she cultured it again.

So now we are on a 1 year treatment plan

I’d like to say that through all this PrincessK has been her same bubbly and happy self, but unfortunately that just isn’t the case.
The reduced sleep has been really hard on her and she is often grumpy and whiny. She regularly breaks down and cries.
It’s heartbreaking because I know this is not who she is and I want to stomp my feet right along with her and curse at the world.

It’s been a hard few months.


And that, my amazingly dedicated readers, is why I haven’t been updating.

After looking back through my notes I know that I want to get back to it. Those were some great times and just reading some of the things I wrote put a smile on my face. I can’t promise that updates will be coming out quickly, but I will jump back in and give it a go.


Thank you all for sticking around.

 

[Ndusmama]

Real Life Update… Yes We are All Still Alive

I don’t think I realized just how long I’d been gone until I got the notification today that someone had posted and I popped in to see what was being said.
Honestly, I thought you would have all forgotten about us by now.

I didn’t realize that there were people who were really invested in our story which makes me feel both all warm and fuzzy instead and completely terrible at the same time.
I swear that I didn’t mean to walk away from the report and abandon you all... it just kind of happened.

First, this happened.

Our computer happens to be in the upstairs area where this renovation was taking place so it had to be disconnected for a few weeks.

During that time this also happened:

Yep. We made another trip to Disney.
This time with my cousin and her family. It was an… interesting trip. Very different when you are travelling with another family.
Of course it IS Disney so we had a great time. Despite being chased back home by a hurricane.

We got home on the Friday of the Labour Day weekend and the next day BGirl dropped a huge bomb on us: she was cut from her basketball team on Thursday

I felt terrible for her.

We moved her in to her dorm the next day and then spent the next week back and forth on the phone trying to figure out what to do. Another team wanted her, but it would be playing at the college level and the tuition was a lot more. In the end, since she only went away to university because of basketball, we encouraged her to make the very difficult choice to come home and take some time to figure out who she is.
That has been a tough road for her. She has been “BGirl the basketball player” since she was 12. It was a part of her identity. Now that she isn’t playing, she doesn’t know who she is. It’s been hard to watch her go through this identity crisis and it’s not over, but slowly she is working though things and figuring out where she wants to go. At this point she knows that she doesn’t want to go back to university but she’s not sure what she does want to do. For now, she’s working full time at Tim Hortons (how very Canadian eh?)

The week after we moved BGirl back home, PrincessK had her quarterly CF clinic. Which went really well… until the following week when we got the call that PrincessK had cultured pseudomonas

In case you don’t know what pseudomonas is (and really why would you?) it is a bacteria that is found “everywhere”. It is typically not an issue for the general population but for people with CF their mucus provides the perfect breading ground. It is the most common form of bacterial infection in CF patients that leads to chronic infection and lung deterioration… so not good.

It is also very difficult to eradicate.

As a result PrincessK has been on a regimen of twice daily inhaled antibiotics. This has been a pretty big strain on us since the timing of the treatment with regard to her other physio has changed all of our routines. Poor PrincessK is losing about 1.5 hours of sleep every day over what she was getting before.

Some night’s she’s just so exhausted.

This treatment was originally prescribed for 1 month after which she was re-tested… and cultured it again.

Then on to 3 months. Retested at last clinic… and she cultured it again.

So now we are on a 1 year treatment plan

I’d like to say that through all this PrincessK has been her same bubbly and happy self, but unfortunately that just isn’t the case.
The reduced sleep has been really hard on her and she is often grumpy and whiny. She regularly breaks down and cries.
It’s heartbreaking because I know this is not who she is and I want to stomp my feet right along with her and curse at the world.

It’s been a hard few months.


And that, my amazingly dedicated readers, is why I haven’t been updating.

After looking back through my notes I know that I want to get back to it. Those were some great times and just reading some of the things I wrote put a smile on my face. I can’t promise that updates will be coming out quickly, but I will jump back in and give it a go.


Thank you all for sticking around.

I think most of started reading loooooonnnnng after you started. And when bored what does one do but go read the disboards! At lest that's what I do.

Thanks for life update. Sorry princessk is sick. That really sucks! Not that I can really compare my 6 year old is on a daily breathing treatment twice a day until at least April. It goes to every 4 hours if ANY sign of a cold. So lack of sleep and schedules around breathing treatments I understand.

 

[irene_dsc]

Sending lots of hugs your way. Lots of rough stuff. Glad you enjoyed looking back at your trip notes, but totally understand if it takes a while (or even if you never do finish.)

 

[chelynnah]

Thanks for the update. I'm sorry things have been so rough. Hugs to your family.

 

[AGoofykindagirl]

I thought maybe maybe life had thrown some things your way to keep you from continuing. I'm sorry I was correct. I hope things are better soon and that 2017 is the best year ever for you and your family! Sending hugs and positive thoughts your way!

 

[DisneyFreak06]

Oh no. CF is horrible and scary. Sending hugs, prayers and pixie dust your way for a better 2017! I'll stop at a Timmies for a hot chocolate and think of you!

 

[dalmatian7]

thinking of you. from a member of a CF family, I know how it goes. Best wishes for a healthy 2017. thanks for the update.

 

[DonnaBeeGood]

.

 

[pkondz]

Yes We are All Still Alive

Glad to hear it! Welcome 'home'!

Honestly, I thought you would have all forgotten about us by now.

Not likely.

I didn’t realize that there were people who were really invested in our story which makes me feel both all warm and fuzzy instead and completely terrible at the same time.

Toss the terrible part and keep the warm and fuzzy, okay?

First, this happened.

That's terrible! I mean that shirt totally clashes with the shorts.

During that time this also happened:

<gasp> People lost their faces!!! The horror!

Yep. We made another trip to Disney.

Oh! Well, that's okay. You can lose your face in Disney.

This time with my cousin and her family. It was an… interesting trip. Very different when you are travelling with another family.

Uh, oh...

BGirl dropped a huge bomb on us: she was cut from her basketball team on Thursday

Oh, no! Sorry to hear that.

That has been a tough road for her. She has been “BGirl the basketball player” since she was 12. It was a part of her identity. Now that she isn’t playing, she doesn’t know who she is.

Totally understand that. Elle (DD19) was on a dance team since she was 3. Now... zip. Done. Been a bit of an adjustment.

For now, she’s working full time at Tim Hortons (how very Canadian eh?)

ALL RIGHT!!!!!



Whoops! Sorry.

the following week when we got the call that PrincessK had cultured pseudomonas

In case you don’t know what pseudomonas is (and really why would you?) it is a bacteria that is found “everywhere”. It is typically not an issue for the general population but for people with CF their mucus provides the perfect breading ground. It is the most common form of bacterial infection in CF patients that leads to chronic infection and lung deterioration… so not good.

It is also very difficult to eradicate.

Oh, man. So very sorry to hear this.

Poor PrincessK is losing about 1.5 hours of sleep every day over what she was getting before.

That's rough. Kids need their sleep.

This breaks my heart. Awww.... crap. Poor little thing.

So now we are on a 1 year treatment plan

One. Year....... Praying for you if you wish, thinking of you if you'd prefer.

I’d like to say that through all this PrincessK has been her same bubbly and happy self, but unfortunately that just isn’t the case.
The reduced sleep has been really hard on her and she is often grumpy and whiny. She regularly breaks down and cries.
It’s heartbreaking because I know this is not who she is and I want to stomp my feet right along with her and curse at the world.

It’s been a hard few months.

I have no words. But you are in my thoughts, okay?

I can’t promise that updates will be coming out quickly, but I will jump back in and give it a go.

I never say this. I always say, "Update when you can!" or something like that.
Don't worry about the updates. Take care or your little girl, your family and yourself. That's way more important.
If at some point, you feel like doing this again.... just pick it up right here. We'll be here.

 

[DisneyFreak06]

I never say this. I always say, "Update when you can!" or something like that.
Don't worry about the updates. Take care or your little girl, your family and yourself. That's way more important.
If at some point, you feel like doing this again.... just pick it up right here. We'll be here.

This, right here! From all of us!

 

[Saphire5742]

Glad to hear you all are still alive and that you managed to get another Disney trip in.
Sorry to read of all the not great stuff going on right now. That really sucks! Hope things get better soon.

And don't worry about updating. Just focus on taking care of your family right now. Your faithful readers will be here whenever you do get around to it.

 

[ForeverDance]

Thank you all for your amazing words and support. It means a great deal.

Like most people we just finished our Christmas holidays and I have to say that despite getting sick and having to work a few days in there, the holidays did a world of good for us (don't worry PrincessK is the only one who didn't get sick).

Over the holidays PrincessK has been able to sleep as much as she wanted. Getting around 11 hours of sleep consistently every night. After a couple of days we started to see the old her again. She was happy and joking. She ran around and laughed. Sure she had a few whiny moments because well she's 5 and that's what they do sometimes, but overall it was just an amazing transformation.

It was great, but it also confirmed what Grumpy and I suspected all along: she simply wasn't getting enough sleep. With this treatment plan being "semi-permanent" we needed to figure out a way to make sure she's getting enough sleep. We played with a few routines and moved some things around and the last couple of days we worked on a schedule that had her in bed by 7 pm. This means that when she gets up at 6 am during the week she will still be getting 11 hours of sleep.

The good news is this schedule is maintainable all but 2 nights. Those are the nights that she has gymnastics and basketball. I believe that if I plan well I can still get her to bed on those nights by 7:30 which isn't too bad. I am really hoping that this will give us a balance between allowing her to do the activities that she loves and still get the sleep she needs.

Fingers crossed. We will see how this week goes.