Hayley's Make A Wish Trip MAW/GKTW (Nov/Dec 2010)

[my*2*angels]

I am SOOOO glad the kids are enjoying their gifts!!! I just LOVE to see their smiles!!!!

Glenda-I love all of the things you sent!!! Thank you so much!

 

[EnchantedPrincess]

I just finished reading all nine pages of your PTR, and just wanted to drop by and say "Hello"! Your kids are adorable, and I love, love seeing their smiles opening all their Big Gives! Also love your count down calendar - I think you did an awesome job!
Just 1 month and 2 days to your trip..I bet the kids are getting more and more excited - it will be here before you know it!

 

[rcq925]

Do kids need a car seat in a limo? Hayley is 6 years old and just uses a backless booster seat? Will she need one for the limo ride? We will be in the limo 2+ hours to the airport each way.

I am trying to avoid dragging her carseat along if we can. Also if the carseat is not needed for the limo, does the car rental agency have then to rent/use, because she will need one once we arrive in Orlando for all the driving in the rental car between parks. Thanks!

We are almost down to the 30 day mark and so excited!!!!

 

[kellyw8863]

Do kids need a car seat in a limo? Hayley is 6 years old and just uses a backless booster seat? Will she need one for the limo ride? We will be in the limo 2+ hours to the airport each way.

I am trying to avoid dragging her carseat along if we can. Also if the carseat is not needed for the limo, does the car rental agency have then to rent/use, because she will need one once we arrive in Orlando for all the driving in the rental car between parks. Thanks!

We are almost down to the 30 day mark and so excited!!!!

I have a llllloooooottttt of catching up to do, so I thought I'd start here! We brought the backless booster for Maya and actually couldn't use it in the limo. There was only a lap belt where she sat instead of the lap/shoulder combo, and it just wasn't necessary. We did bring it because we wanted it for the rental, but we were already bringing Ali's carseat so we just threw it all in the same bag. If money isn't an issue, you could always pick up a booster bottom at WalMart for between $15 - $25 and then just leave it at GKTW. That was our initial plan until we decided that we needed Ali's carseat anyhow. You must be getting so excited - it's just around the corner!

 

[rcq925]

Thanks for the info Kelly! I was thinking about buying one at Walmart too, but thought I had heard someone mention that the rental company has them too.

 

[rcq925]

So Hayley has her regular every three month check up at the Cystic Fibrosis Clinic today. I always get so nervous about these appointments. She will get a throat culture to check for any bacteria that may be growing in her lungs (I hate waiting for the results of this one, usually a week), also she will do PFT's (pulmonary function testing) to see how well her lungs are working. She will also have to have her port accessed for a blood draw for vitamin levels and a flu shot!

She has developed a little cough in the last few days, that I am hoping is just a cold, but with her a cold can always turn into much more

She has been realtively healthy for the last six months. No hospitalizations since April. Six months with no hospital stays is REALLY good for us. But fall/winter is her bad time. I am just praying that she does not get sick right before we leave!!

Anyway, now I am rambling! I will post later tonight and let everyone know how the appointment went!

 

[that's nice]

Good luck on Hayley's appointment today. I hope everything is ok. We know the stress that comes with those 3 month appointments.

 

[my*2*angels]

Praying that Hayley's appt goes well! Please let us know!

 

[Jdougherty]

I'm subbing. I love MAW kids, I have a soft spot for them.

prayers from colorado that it's a simple cold and Hayley is back on the raod to recovery soon.

I grew up outside of southbed and my aunt live in FW, I loved visiting her and the zoo. Your right it's an awesome zoo.

 

[rcq925]

Hayley's appointment yesterday at the CF clinic was so so. Her first round of PFT's (Pulomanry Function Test) were not good numbers. She has a pretty good cough going on right now and I thought for sure she would be admitted into the hosptial for IV antibiotics, but the doctor listened to her and said her lungs sound clear. So that is good. We did an albuterol breathing treatment and then did the PFT's again and her numbers increased, so this was good as well.

He gave me a prescription for an oral antibiotic. If her cough does not get better in the next few days or gets worse, we will fill it and see what happens. We did a throat culture, to see what if any bacteria are growing in her lungs. Results on that should be back on Monday or Tuesday for that.

She did gain weight and grew taller, so those are both good.

So now we play the waiting game. I guess if she was going to get sick, better now then closer to the trip. If we end up in the hosptial, she will have to do two weeks of IV antibiotics, but we still should be able to get done and all better before our trip!

Our trip is only 31 days away! Woo Hoo!

So please keep your fingers crossed that Hayley gets better soon and we can avoid the hospital!

 

[PennyLane1084]

Hello, I just Subscribed to your PTR. I am addicted to these MAW trips. Just watching how excited these kids get always brightens my day. Hayley and Nathan are adorable. YAY FOR THE BIG GIVE!!

 

[that's nice]

SO glad Hayley wasn't admitted. Hopefully it is just a cold and will go away soon. Thanks for letting us know.

 

[PennyLane1084]

Glad to hear Hayley wasn't admitted. I had a lot of respiratory problems as a kid being a preemie. But your kids look like they are about explode with happiness!!! Love the Star Wars swag!!

 

[kellyw8863]

Hayley's appointment yesterday at the CF clinic was so so. Her first round of PFT's (Pulomanry Function Test) were not good numbers. She has a pretty good cough going on right now and I thought for sure she would be admitted into the hosptial for IV antibiotics, but the doctor listened to her and said her lungs sound clear. So that is good. We did an albuterol breathing treatment and then did the PFT's again and her numbers increased, so this was good as well.

He gave me a prescription for an oral antibiotic. If her cough does not get better in the next few days or gets worse, we will fill it and see what happens. We did a throat culture, to see what if any bacteria are growing in her lungs. Results on that should be back on Monday or Tuesday for that.

She did gain weight and grew taller, so those are both good.

So now we play the waiting game. I guess if she was going to get sick, better now then closer to the trip. If we end up in the hosptial, she will have to do two weeks of IV antibiotics, but we still should be able to get done and all better before our trip!

Our trip is only 31 days away! Woo Hoo!

So please keep your fingers crossed that Hayley gets better soon and we can avoid the hospital!

 

[mjarecki]

So we will be getting there on the 15th and have almost the same schedule as you! We are planning on Universal on the 16th, Sea World on the 18th and we will also be at MVMCP on the 19th. We should try to find each other at some point. Since Haley and Michael's medical conditions are so similar I think it would be neat for them to meet!

 

[rcq925]

30 days!!!!!



WOO HOO! I never thought we would make it, but we are finally down to our last 30 days!!

Hayley is still coughing, but it has not gotten any worse! So hopefully it is just a virus!

 

[rcq925]

I'm subbing. I love MAW kids, I have a soft spot for them.

prayers from colorado that it's a simple cold and Hayley is back on the raod to recovery soon.

I grew up outside of southbed and my aunt live in FW, I loved visiting her and the zoo. Your right it's an awesome zoo.

Thanks for joining along! Never been to Colorado, but hope to get there some day. Love the Fort Wayne Zoo! Hoping to hit their Halloween special weekend this weekend!

 

[rcq925]

Hello, I just Subscribed to your PTR. I am addicted to these MAW trips. Just watching how excited these kids get always brightens my day. Hayley and Nathan are adorable. YAY FOR THE BIG GIVE!!

Thank you for joining along! We are finally down to the last 30 days and so excited!!!

The Big Givers are so awesome! I can't even find the words to express how thankful we were to be chosen. I definitely want to participate in the Big Give when we return! I can't sew a lick, but I can do pixie dust!

 

[rcq925]

So we will be getting there on the 15th and have almost the same schedule as you! We are planning on Universal on the 16th, Sea World on the 18th and we will also be at MVMCP on the 19th. We should try to find each other at some point. Since Haley and Michael's medical conditions are so similar I think it would be neat for them to meet!

That would be great!! That is so funny that you have the same schedule. I tried to put quite a bit of research into what days to do which parks since we had so much time to plan and I think I have a pretty good plan.

But I know that things can change and I am expecting the unexpected!

 

[my*2*angels]

I am glad to hear that Hayley was not admitted! I am really praying that the test results come back with good news!!!