Noah's Wish Trip (Wings ~ July 29, 2009)

[maroo]

Spent the morning at respiratory clinic and then bloodwork. Clinic was good...everyone is happy with the way Noah looks. His chest still has some junk, but it has improved and we have been able to decrease our Ventolin use. We did a throat swab, and depending on what the culture grows (he is usually colonized with something, even when he is not sick), we will get some antibiotics on Monday to take along with us "just in case he doesn't look right". Nice to have a bit of insurance! Bloodwork was rough, but they were Noah's LAST POKES before Disney!! One more clinic appointment tomorrow with the plastic surgeon regarding Noah's cleft palate, and then we are not setting foot in a hospital again until we come home!! I think I have our airline issues worked out, and we should be able to run our oxygen concentrator on the flight. Our home oxygen company should be delivering it here tomorrow or friday. Our TPN order should arrive tomorrow too, so we should have all our supplies in order by the weekend.

Only 6 more days until GKTW!!!!!!!!!!!!!!!!

5 more days until we leave home!!!!!!!!!!!​

We did a Dollorama yesterday evening and bought some snacks for the plane, glowsticks and ponchos. We also picked up a much needed swimsuit for Kailyn. I'm still searching for a cooler to carry on the plane with Noah's TPN. Someone at the hospital today suggested a cooler bag inside a suitcase with ice packs. I've never seen these cooler bags before, but I will be hunting for them this weekend!

Someone from the local church here is bring us a hot meal tonight . We are blessed!!

I think I have cooler bags. Not sure when you need them...if for the flight, it won't help. But I have these lunch bag size cooler bags at work. They were freebies for something. They are basically insulated lunch bags you can bring cold stuff to work to eat. Those might work. If you can't find anything else, then we can exchange those when I SEE YOU!!!!

I will bring them from work and if you need them then you can have them!! But keep searching to make sure you get right size and we can just use these as a back up if you find nothing...

 

[ndloewen]

I think I have cooler bags. Not sure when you need them...if for the flight, it won't help. But I have these lunch bag size cooler bags at work. They were freebies for something. They are basically insulated lunch bags you can bring cold stuff to work to eat. Those might work. If you can't find anything else, then we can exchange those when I SEE YOU!!!!

I will bring them from work and if you need them then you can have them!! But keep searching to make sure you get right size and we can just use these as a back up if you find nothing...

Thanks for the offer, but we need them for the flight. Once at GKTW we don't need them. Plus we need a HUGE bag (we want to put all the TPN bags into one)!

 

[maroo]

Thanks for the offer, but we need them for the flight. Once at GKTW we don't need them. Plus we need a HUGE bag (we want to put all the TPN bags into one)!

Very cool!!! Do you think you will end up taking any TPN home with you? In smaller bags? I may not hear back from you...as I leave in 7 hours!

So I will just throw some in my car and you can get them if ya want em.

Can't wait to see you guys!

You are leaving SO SOON!!! Yippee!!

 

[QueenMomof2]

I'm so happy to hear that Noah is doing well and all set to go. I'm so excited for you I can't wait to hear your TR.

On the cooler bags issue I would definitely try Canadian Tire.

ETA: I just checked the Canadian Tire website and they have a TON of coolers on there. They have a bunch of different bag ones so I think they are your best bet.

 

[oklamomof4boys]

AHHHHH! I can't believe your trip is almost here! I am so excited for you! I am glad they are sending precautionary antibiotics with you. I am getting tears in my eyes just thinking about your trip. There have been so many prayers for this trip. Promise me when you get home, even if you don't have time for a trip report for a while- you will at least post a quick something- even if it is just " it was WONDERFUL!!!"

Carol

 

[ndloewen]

We had our last clinic appointment today...and Noah is now officially free of that place!!

Clinic with our plastic surgeon was about as unenventful as I thought it would be. We were all in agreement that in light of the happenings of the past few months, palate surgery is not a priority. There is no benefit to fixing it at this point (except perhaps speech development, but that we don't know either), and there are many risks for Noah. The surgeon is most concerned of causing more respiratory issues. We will reassess in the future if things do improve with Noah's health. But for now, we will leave well enough alone!

Our TPN for the trip arrived today, along with an extra Prizm pump to take with us as backup. And our oxygen concentrator is being delivered to Brad's office. I have a bunch of running around to do yet on Saturday. Our friends have offered to take Kailyn & Joshua along with them to Thief River Falls so they are VERY excited. The original plan was for us all to go, but that was just too much. I'm so happy they still get to go, though. It will be so helpful to have just Noah home so we can get all the last minute stuff done!!

Some pictures from the package we recieved from the wish foundation with our tickets and spending money...

Inside the backpack were t-shirts and buttons for everyone, autograph books, stuffed animals and a blanket for Noah.

Noah being a ham at the dinner table with his new friend...he loves to imitate us!!

 

[oklamomof4boys]

Noah is such a character! His personality really comes shining through in pictures! I can't wait to see pictures of the entire family at Disney World and GKTW.

Carol

 

[3princesses+aprince]

I can't believe there is only 4 more days until you guys are heading off to Disney!

 

[kimmylaj]

just wanted to say how much seeing your adorable little guy makes my day

 

[ndloewen]

Another package arrived on Thursday from Anna...

A great batman button up shirt and batman t-shirt. Joshua was very excited!! Here he is modeling them both together...

A very cute Tigger outfit for Noah...

It's a perfect fit!!

And thanks for the drawing, Lucas!!

Thank you SO much Anna!! We love the outfits and can't wait to show them off in Disney!

Another package arrived yesterday, but that one will have to wait until Kailyn & Joshua come home on Sunday.

 

[autumnpalm]

Oh my gosh, 3 more days!!!!!!!!

I'm glad Kailyn and Joshua got to go to the Falls.

Every picture of Noah just brings a smile to my face. The one with him at the dinner table "imitating" you is too cute!

 

[mytwotinks]

Thank you so much Denise and family!! The outfit fits her perfectly and I love all the buttons!! OH, and we will be sure to eat lots of Disney popcorn for you!!

I'm so glad it fits! kailyn is so slim compared to my girls so I was starting to get a little worried that she would be swimming in it!

You guys have a blast and tell us all about it when you get home!

 

[ndloewen]

We are leaving for the hotel TOMORROW!!!!!

​

 

[iu97alum]

WOO HOO! ! Are ya'll beyond excited???

 

[oklamomof4boys]

I am so excited for you all- I can hardly stand it! I am just sure you are going to have an amazing trip!

 

[ndloewen]

WOO HOO! ! Are ya'll beyond excited???

Yep!!!!!!!!!!!!!!!

We are pretty much packed now. Just need to pack Noah's TPN and meds, but they need refrigerating, so I can't do that until the last minute. Also gotta pick up prescriptions on our way tomorrow. But I think everything else is good to go! We are planning to head to the hotel once the kids get home from school tomorrow. They still don't know about the hotel night.

I just can't wait!!!

 

[dmbfan]

OMG Nichole...your GOING TO DISNEY!!!! YEAH...so glad your are ready to go and Noah is home and feeling good. I was just going thru all the Big Give pictures and WOW is all I can say....the outfits are AMAZING.

Can't wait to see your pictures when you get home...and that means we leave about 2 weeks after you get home...WOW

If I do not get a chance to come back and post before you leave, I just wanted to say HAVE FUN and enjoy this wonderful time that your family so deserves...ok getting teary eyed when I think about it. I will also keep Noah in my thougths and prayers that the remains and stays healthy during the whole trip.

 

[Tracie]

Woo Hoo it's almost Mickey time!

Have a great trip!!

 

[3princesses+aprince]

Oh man, I can only imagine how excited you guys must be. Even more so that Noah is doing so good. I'm so happy for you guys! I cannot wait to read your trip report when you get back. Can't wait to see a very happy Noah with the characters.

 

[rodeo65]

So, so, so late adding to this thread. I've been lurking for a while and am so happy your trip is about to happen. I found your PTR from reading Becca's and I follow them regularly.

If you are still looking for a large cooler, and there is a Costco near you they have a set of three super large bags. Two are just open caryall bags (but humungous Costco size) but one is a freezer bag. You can fit a whole lot of Costco size freezer boxes in them and in fact this is what I use in the summer months to do my grocery shopping. DH used it to transport a bunch of food he had made up from the Hamilton area to Kingston and everything was still frozen.

Have a wonderful trip and I'll be looking for updates when you get back.