Saturday, February 28, 2009
Noah is OK
Thank you to each of you for all of your prayers. Noah is OK. He is not great, as he is still fighting this cold, but there are no fevers, and he is enjoying this trip to its fullest. He and the other kids were tucked into bed tonight by Mayor Clayton after his surprise birthday party. We just spent the day here today enjoying the horse rides, pool time, candy land playground, etc. Our home care nurse (who is also in Orlando right now) came by for a tour and we are going to Seaworld together tomorrow. (I am not sure if she gets paid for watching Noah while we go on the rollercoasters ... but she should :) )
Keep Praying for Noah. So far so good, but we have a ways to go yet.
Keep Praying for Noah. So far so good, but we have a ways to go yet.
Friday, February 27, 2009
Friday Adventures
Seeing as I have to "check email" anyhow, I, Brad, am online and am able to give a brief update.
Today we went to Universal Studios Islands of Adventure. The park is split into 5 themed islands and everyone had a great time. The first, "Suess Landing" was a favorite. The best part once again was the amazing treatment by the staff. Once they see that Wish Button, they jump into action. If it is a ride, they have a personal escort take us to the front of the line through back doors and hallways. They are also great with special meetings with all of the characters from "Cat in the Hat" to "Spiderman" we met them all in a place that is out of the public chaos.
Back at Give Kids the World, tonight was the pirates and princesses party. It is another street party with many activities and plenty of dancing ending off with a corontation of all the kids on stage. Last night was Christmas with a full turkey dinner, followed by Santa (and gifts galore donated by Hasbro) and a parade to end the night. Tomorrow is a surprise birthday party for the Mayor.
Today we went to Universal Studios Islands of Adventure. The park is split into 5 themed islands and everyone had a great time. The first, "Suess Landing" was a favorite. The best part once again was the amazing treatment by the staff. Once they see that Wish Button, they jump into action. If it is a ride, they have a personal escort take us to the front of the line through back doors and hallways. They are also great with special meetings with all of the characters from "Cat in the Hat" to "Spiderman" we met them all in a place that is out of the public chaos.
Back at Give Kids the World, tonight was the pirates and princesses party. It is another street party with many activities and plenty of dancing ending off with a corontation of all the kids on stage. Last night was Christmas with a full turkey dinner, followed by Santa (and gifts galore donated by Hasbro) and a parade to end the night. Tomorrow is a surprise birthday party for the Mayor.
Thursday, February 26, 2009
Wish Trip Day 3
Unbelievable...amazing...I am unable to describe this place...how much our kids have done...how spoiled we have all been already. It has been a whirlwind, and I have realized there is absolutely no way I can keep up the blog. So you will all have to wait until we get home for a formal trip report with photos. We barely have time to breathe, but it's all fantastic!!
Noah was not well yesterday...his lungs have not been great and I was quite worried...he slept through most of Magic Kingdom. Today he seems perkier...please pray for health and that we can get through this trip without incident.
Today is Christmas here...the whole place is decorated and we are off to Christmas dinner, carriage rides, gifts from Santa and SO much more!!
Noah was not well yesterday...his lungs have not been great and I was quite worried...he slept through most of Magic Kingdom. Today he seems perkier...please pray for health and that we can get through this trip without incident.
Today is Christmas here...the whole place is decorated and we are off to Christmas dinner, carriage rides, gifts from Santa and SO much more!!
Tuesday, February 24, 2009
Made It
I am just writing a quick note tonight for those checking in on us to see if we made it to Florida. WE ARE HERE. Was there ever any doubt that God would escort us all the way. We are at Give Kids the World. It is an Amazing Place and I (Brad) am already being spoiled ( any food / any time) not to mention the kids. Nichole will have a more formal posting tomorrow after our day at Magic Kingdom with pictures I am sure.
Keep Praying / They are working.
Brad
Keep Praying / They are working.
Brad
Sunday, February 22, 2009
And Yet ANOTHER Package!!
We had another package arrive on Friday from Tracie, but it had to wait until today to be opened...

Personalized matching t-shirts for the whole family!!!

You'll have to wait to see mine at the park...

Thank you SO much Tracie!! These are SO cute and I love all the details!! I'm very excited for us all to wear them.
Our bags are now packed, except for Noah's TPN and meds which I have to do at the last minute. We have a couple of prescriptions to pick up on the way to the hotel tomorrow, but then we should be good to go!!
Friday, February 20, 2009
More Big Give!!
Another package arrived yesterday 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 this morning, but that one will have to wait until Kailyn & Joshua come home on Sunday.
Thursday, February 19, 2009
Officially Free!
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! 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!!

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! 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...
Wednesday, February 18, 2009
The Last Pokes!!!
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 palate, and then we are not setting foot in a hospital again until we come home!!
I think I finally 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.
Someone from the local church is bring a hot meal tonight. We are blessed.
I think I finally 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!!!!!!!!!!!
Someone from the local church is bring a hot meal tonight. We are blessed.
Tuesday, February 17, 2009
Even More Packages!!!
I'm having a hard time keeping up with all the pictures...we recieved 2 more packages yesterday!! The kids were excited that apparently Canada Post didn't have a holiday yesterday (sorry Steve!!). The first package was from Linette...
First there were tattoos, a coloring book and the most adorable Donald Duck outfit for Noah...
Wall-E and Indiana Mickey for Joshua, along with pants (love the mickey buttons on the pants!!). Joshua WAS more excited than he looks on the pictures...

Mickey Mouse and Princesses for Kailyn. I especially LOVE this first outfit...




And the Donald Duck outfit. How CUTE is this?????






I am still searching for a soft-side cooler on wheels for Noah's TPN that we can carry on the plane. If anyone knows where I might find one around here, or has one that I can borrow, we would really appreciate it!!
Buzz and Cars outfits for Noah. The t-shirts have a little pocket that talks when you press it. So cute!! Noah was quite confused by it at first, but wanted us to press it over and over...
Wow, so much stuff!! Thank you SO much for everything!! It will be so fun showing them off in the parks! I cannot believe you say that you are not "excellent" at sewing. You did an amazing job and we love ALL the outfits!!!
The second package was from Denise...
"Oh, I have a good feeling about this one!!" she says as she sees the material...
Yep, she LOVES it!! And so do I!!!
Thank you so much Denise and family!! The outfit fits her perfectly and I love all the buttons!! (It's hard to tell from the picture, but the mickey mouse outline is made up entirely of buttons). OH, and we will be sure to eat lots of Disney popcorn for you!!
And, mom, these pictures are for you. So sorry it's taken me so long to get it on the blog. Here is Noah wearing the very cosy outfit that she had made for him by Myrna at Christmas. We love it and it's a perfect fit!!
Monday, February 16, 2009
More Packages!!
Finally, the long awaited big give hospital pictures. Brad and the kids brought 2 packages to the hospital and we had such a blast opening them!! The first package was from Alison... 
Thank you Nathan for the Mickey Mouse drawing...we had to show it off! The kids thought it was very neat that you had just been on a wish trip and they loved the drawing!! Carol and family, thank you so much for your generosity!! You brightened up our hospital stay and once again, we are overwhelmed!
Inside were games, wall stickers for the kids rooms, a book for Noah and beautiful water bottle holders for Kailyn & Joshua...
And, the most adorable outfit for Noah!!! I waited until home to put it on him and take pictures...

My favorite part...
Alison, thank you so much!!! Kailyn & Joshua love the goodies...they were such a blessing to receive at the hospital. And we are all in love with the precious outfit for Noah!! Can't wait for him to wear it at Disney!!
Inside were so many goodies...I wish I had gotten more pictures! Disney PJs for all the kids, a Minnie Mouse for Kailyn, Wall-E for Joshua, and Tigger for Noah, plus lots of other treats!! Noah was thrilled with Tigger and gives him constant hugs!!
Kailyn loves her princess pj's and her Minnie Mouse that she has been wanting so much!! 
Joshua loves his batman pj's and the removable cape!! And Wall-E was the biggest hit!! He adores it and has been trying to figure out how to fit him in his carry-on. I'm sure he will find a way!!
I will have to try and get a better picture of Noah in his cute Mickey Mouse pj's while we are at GKTW. Kailyn & Joshua refused to take off their new pj's and wore them home from the hospital! Think our kids are spoiled yet???
The second package was from Carol (her family just came back from their wish trip recently).Joshua was so excited, he could barely look in the box...
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