Make-A-Wish and "M to the I, I, C to the K E Y, M O U S E" for Hannah!

[cogero]

You should get a letter from Hannah's doctor detailing what you are bringing is medically necessary. It will smooth things over with the TSA and airline. The only thing iffy would be the oxygen.

 

[billwendy]

Did you see the harness that Kade used for his flight? He also cannot sit up unsupported, and they said it worked great for him - just in case you cant bring your car seat.....might be an option???????????

I hope you get quick answers!!!

 

[LVMom23]

You should get a letter from Hannah's doctor detailing what you are bringing is medically necessary. It will smooth things over with the TSA and airline. The only thing iffy would be the oxygen.

Great idea! I have to get a note from her anyway for our nursing agency basically "giving permission" for us to not use them for a week.

Did you see the harness that Kade used for his flight? He also cannot sit up unsupported, and they said it worked great for him - just in case you cant bring your car seat.....might be an option???????????

I didn't see that, but I know that our MAW volunteer was looking into one for us. I will have to check out what Kade is using!

 

[billwendy]

Josh has a picture of Kade in it - check out their PTR. Its called a CARES Harness. They also used his soft cervical collar and a neaoprene vest to get the level of support he needed. I was amazed at how well he sat with it on!!!!!!

http://www.kidsflysafe.com/?gclid=CILCx4u17KcCFQbe4Aodg1AJbQ

 

[jimmysmom74]

LVMom23 I don't know if you remember me from the Disabilities board, but your family, especially your beautiful little Hannah have been on my mind and in my prayers. SOOOOOOOO happy Hannah got her wish!!! All the best to your family for a wonderful and magical trip!

 

[LVMom23]

http://www.kidsflysafe.com/?gclid=CILCx4u17KcCFQbe4Aodg1AJbQ

This is the one I had found when we first started thinking about our trip back to the NIH and even more so when we thought about Disney World. Our MAW volunteer (whom you now know LOL) is going to see what they are able to come up. We can't afford the money for that right now, so we just need to come up with a backup plan just in case!

LVMom23 I don't know if you remember me from the Disabilities board, but your family, especially your beautiful little Hannah have been on my mind and in my prayers. SOOOOOOOO happy Hannah got her wish!!! All the best to your family for a wonderful and magical trip!

Thank you, thank you! Hannah is an amazing little girl and gone through and has fought harder than anyone I know (and smiles while doing it!). Can you tell I'm biased?

 

[LVMom23]

Look what Hannah got in the mail today! But because her brother and sister were gone for the night with Daddy at the Monster Truck Jam, she has to wait until tomorrow to open it.

But Hannah still was curious!

"What is in there?" she wonders curiously...

She will have to wait until tomorrow to find out -- and so will we!

 

[angeque143]

Now that we know we are flying Southwest, I just sent them an email (even though I likely could have found the answers going through the website, I wanted written documentation on specifics).

We are going to be going to Disney World for my youngest child's Make A Wish trip. I have a few questions as to what your rules and policies are.

1. She has about 8 different medications she takes. Because she is G-tube only, they are all liquid. All but two have prescriptions (those two are over-the-counter). Is there an ounce limit on each of them that we have to adhere to?

2. Because she is medically fragile, she can't sit by herself in a seat for more than a couple of minutes. She is 2-1/2 years old and weighs about 30 pounds. Can she sit on our lap for takeoff/landing? Can we bring her carseat (regular Cosco)? If not, do you have any recommendations as to what we could use?

3. My daughter is also tracheostomy-dependent, although she rarely requires oxygen. However, this is only the second time she has flown since she got her trach last summer. If in the rare instance she does need oxygen in flight, is there any emergency supply that we could access?

4. We are going to be bringing a couple of boxes of medical supplies with us. The only liquid in these boxes is a few bottles of sterile water, saline water, and one bottle of hydrogen peroxide. We don't anticipate needing to open it on the flight, and we will likely have the box sealed with tape (we would have no problem having security go through it as long as it is retaped). Would these count as part of our baggage limitation? Would the liquids inside cause a problem because the containers are 8-oz containers.

Took me forev er to find you....As far as the car seat...check the label on it and make sure it is approv ed for use on aircraft....We hav e 2 seats and are taking your Cosco and it can go on the plane as her seat...this will help us when we land as far as her needing to be in a saftey seat. Hope that info helps

 

[tinytreasures]

Is she Okay in her Car Seat? You should be fine having her in that for the trip if she can handle it in the car. Check the side of her seat and see if it says Aircraft on it. We are thinking about getting one of these for Ella on our trip.
Still trying to figure out what carseats to bring with us.
Ugh you get a Big Give and you are going to make us wait

 

[Livi'sMom]

Hey.... for the quarters and pennies.... get a few of those tubes that the mini M&M's come in. You can stack a penny and then 4 quarters repeatedly. It holds them nicely. If you can't find them in LV, let me know. I still have some around here from October trip.

Making a list of Hannah-accessible rides.

 

[LVMom23]

.As far as the car seat...check the label on it and make sure it is approv ed for use on aircraft..

Is she Okay in her Car Seat? You should be fine having her in that for the trip if she can handle it in the car. We are thinking about getting one of these for Ella on our trip

Hannah only does well in her carseat for less than 20 or so minutes. She hates being restrained and ends up throwing tantrums that throw her into hyperventilation if she is in there too long. But if we could do it just for take off and landing, that would be good enough!

But it is a great idea, so I will look into this idea, and that travel thing looks really cool. Seems so cheap that it is too good to be true!

Hey.... for the quarters and pennies.... get a few of those tubes that the mini M&M's come in. You can stack a penny and then 4 quarters repeatedly. It holds them nicely. If you can't find them in LV, let me know. I still have some around here from October trip.

FANTASTIC idea! So, are you telling me the penny presses are 4 quarters each? I was just assuming they were 2 quarters. Fortunately my mother-in-law just gave the kids each a roll of quarters so we will bring those with us.

Making a list of Hannah-accessible rides.

I'm going to start putting together a general list also so we can be more organized this trip. You know me, I'm NEVER this planned when it comes to fun, but with Hannah, we have a lot to consider like whether or not she can go on our lap during the ride, if there is water that could get into her trach (the Pirates ride is out because of the drop), and if it moves too fast that her eyes would get locked (like the Dumbo ride).

We don't really need her to ride a lot of the rides, but it would be fun to be able to do some like the Jungle Cruise and Its A Small World for sure.

 

[LVMom23]

Ugh you get a Big Give and you are going to make us wait

If it makes you feel any better, I had to wait too!

After all the kids got up this morning, I let them know that they had Mickey Mail! Well, of course Hannah knew last night (pics). They were so excited!

Ethan helped Hannah with her stuff (even before opening his), and her favorite was the Mickey Mouse figurine. Once Daddy took it out of its case, she actually held onto it for more than 5 minutes! This was the PERFECT size, and it was even more awesome because she has a hard time holding onto toys because of her movement disorder.

Ethan was SO excited about his Alien pen. I guess he is even more crazy about the aliens from Toy Story than I thought! He was also fascinated by the lanyard, and when I explained how he can trade pins with the CMs, he thought it was the coolest thing ever. Except he doesn't want to trade the one he was given here because it was the Mickey dressed as the Nightmare before Christmas outfit, and he loves that movie!

Abby was in awe with the huge amount of gifts, and she didn't know what to touch first -- the earrings, rings, stickers, lanyard... Then she saw the chapstick with Belle on it and a jewel on top, and she got so excited to show me. (I wish I got more pics of Abby, but at this point Hannah was exhausted since she was up 4 hours before her brother and sister and needed to be held)

Thank you Lisa and Megan (mommy2mrb) for such a fantastic, fantastic gift! To call this pixie dust is an understatement. This just set the excitement for the kids even higher and made it more real for them that we are truly going!

 

[angeque143]

YIPPEE for Mickey Mail!! the children look thrilled!!!

 

[billwendy]

I LOVE their cute faces!!!!!! (dont tell Ethan I said that - lol - his face was of course COOL!).

Awww, love that Hannah held on to the mickey!!! thats wonderful!!!!!!!

 

[tinytreasures]

They looked so excited

 

[mom2pixies]

That was great! Loved seeing all the pixie dust. So happy to see such happy kids!!!

 

[brookerene]

Woohoo!!! Awesome BG's!!!!! I'm glad Hannah liked that figurine so much... that is great!

 

[ellenbenny]

Just joining in, the pictures of the kids with all their pixie dust are just so adorable! SO happy that Hannah is getting her wish!!

 

[LVMom23]

There is a reason we chose Disney World for her... still loving that Mickey figurine tonight.

 

[angeque143]

There is a reason we chose Disney World for her... still loving that Mickey figurine tonight.

My Eva is so like her....Freaks out over her Mickey!!! She loves the nurse's office in her school because of the BIG Mickey there...in fact that is when she started saying Mickey.