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

[ndloewen]

It is finally time to start my own pre-trip report!!

Cast Members:

Myself, Nichole aka Mom (33)
My hubby, Brad (34)
Daughter, Kailyn (8)
Son, Joshua (6)
Wish son, Noah (3)


A bit of background for you as to why Noah has been granted this wish trip. During a routine ultrasound during my pregnancy, we discovered that Noah would be born with a cleft lip and palate. He was also measuring unusually small. So I had an amnio done and we recieved the devastating news that no parent ever wants to hear. Our son has a rare genetic condition; a piece of his chromosome #12 is missing. The condition is so rare, that very little information could be found, except for a couple of babies who were stillborn. So we were given the choice to terminate, or the bleak prognosis of a likely stillbirth. Choosing to carry our boy to term, we prepared ourselves for the worst.

But God had other plans for our little one, and he came into the world kicking and screaming. On day 2 he began losing the battle to breath and was intubated in NICU. After 2 weeks, he was able to breath on his own, and at four weeks, we took our little 4lb peanut home.

His chromosome deletion has caused many health issues. Developmental delays, no oral feeds, multiple aspiration pneumonias, severe GERD, sleep apnea requiring nighttime oxygen, asthma, failure to thrive, mild heart issues (PDA/PFO), ketogenic hypoglycemia, fat malabsorbtion requiring a central line and TPN feeds, multiple line sepsis, blood clots and bone infections...the list goes on. Our doctor always calls our son "the boy with 9 lives" and he truly has narrowly escaped death's doorstep numerous times. Our scariest experience was this past february where the flu combined with a fungal infection caused him to code and he spent 18 days in PICU intubated and on the oscillator. He's had 16 surgeries for his cleft lip, g-tube, fundoplication, many central lines, ear tubes, stoma revision etc. This past spring he was also diagnosed with yet another genetic syndrome, called San Filippo Syndrome, which is a brain degenerative disease. This means that eventually he will begin to regress, and life expectancy is usually early teens.

Now at 3 years old, weighing just over 14lbs, he is our little miracle...the joy and sunshine of my life!!:love:

That brings us to these past couple of months. We were contacted by a wish foundation called the Rainbow Society and couple of months back. After a brief 5 minute conversation over the phone, I was told that even though he medically qualified, he didn't meet their criteria because he is non-verbal. I was stunned and angry. Refusing to give up on this, I then contacted the Children's Wish Foundation. They have been absolutely wonderful in working with our family and we were able to verbalize Noah's wish for him. So once the doctor's paperwork was out of the way, we recieved the wish papers in the mail. Our foundation is different from other foundations, in that we haven't actually met our wish coordinator. It has all been done over the phone or through the mail. We wrote down Noah's official wish and mailed it back in..."To go to Disneyland to meet Tigger and see the animals at Animal Kingdom." Noah is a huge animal lover and he's always gravitated towards anything Tigger!

Yesterday I recieved a call saying that Disney is a go and we can pick our travel dates. I am still having trouble deciding when to go, but we are thinking of February. We are in a good window medically right now, as we have just gotten rid of Noah's central line and TPN, and he is now completely GJ tube fed. The line has been the source of so many complications, so we'd love to be able to get to Disney while he is line free!!:cheer2:

[zeppy68]

Welcome!!!!!!!!

YOu are in for a treat. This is a very magical vacation.

february is a good time crowds are down except president weekend. but

crowds dont matter because you get special priveliges. If I had a choice I would probaly try beging of march the weather is usually very good but it is Florida and whenever you choose will be great.

[kimmylaj]

cant wait to hear more. what a strong , brave boy you have

[tinytreasures]

wow he is a miracle :lovestruc

[maroo]

woo hoo!! subscribing! Can't wait to hear all about your trip! :)

:cool1:

[llurgy]

Yay, you started a trip report!!
Since you first started writing about getting a wish a few weeks back I have read your entire blog and cant quite beleive what a trooper Noah is!! I have been in tears reading and looking at pics, especially when looking at Noah next to a baby just a few months old and the baby is bigger than Noah. He is a sweetie pie, just that, a total sweetie pie peanut :)

[ndloewen]

Yay!! I have some readers!! Thanks for all your wonderful comments. Noah is our sweetie pie peanut for sure!! We love him to bits! Time for pictures...

Noah's birth and NICU...
http://i413.photobucket.com/albums/pp220/ndloewen/noahsbirth.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/noahsbirth-1.jpg
PICU during our most frightening days...
http://i413.photobucket.com/albums/pp220/ndloewen/Noah2008003.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/Noah2008013.jpg

Our most recent hospital pictures...
http://i413.photobucket.com/albums/pp220/ndloewen/DSC03565.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/Noah4blog.jpg
Noah at his best this summer...
http://i413.photobucket.com/albums/pp220/ndloewen/43.jpg

More pictures of the whole family to come...

[maroo]

Oh my gosh...I had already seen the pics on your blog...

but put in that sequence...from being so, so sick...to being so healthy (and back and forth, I know)...wow...

What a precious child...a precious miracle...you have. :)

[jillalvarez2003]

What a cutie! Can't wait to read more!

[ndloewen]

I have officially requested our dates now that we have all the passports, (thanks to maroo's help with crowd calendars). :yay: In order of preference:

1) Feb 24-March 3
2) Feb 27-March 6
3) Feb 9-16

Now I play the waiting game again as I wait to hear back from my wish coordinator. Praying it will all fall into place. We were wanting to request January dates, but we have a hospital team meeting on Wednesday to discuss plans...possible exploratory abdominal surgery after Christmas for a possible intermittent intestinal malrotation. Also, Noah just recently got rid of his central line and TPN a few weeks back, but we are now on a downward spiral with his weight. So medically January may turn into a busy month. Just praying we can get him healthy enough for February!!:)

Our wish coordinator also told me that since it is Noah's wish to meet Tigger, they are including a character meal at the Crystal Palace as part of his wish (I've requested it to be lunch). Although Noah doesn't eat anything orally, this will ensure he meets his Tigger for sure. He will love the character interaction. And the rest of us will certainly enjoy the food!!:tigger:

[mom2lilnick]

Awwww.. Noah is so cute!

[OneBlessedFamily]

Noah is GORGEOUS! I have 2 cleft affected children and I'm so happy to see what an amazing job was done on Noah's lip! Pierre is going to have surgery in a few weeks, so we'll see how it goes!

Congratulations on your wish!!!!

Mary

[ndloewen]

Noah is GORGEOUS! I have 2 cleft affected children and I'm so happy to see what an amazing job was done on Noah's lip! Pierre is going to have surgery in a few weeks, so we'll see how it goes!

Congratulations on your wish!!!!

Mary
Yes, our surgeon did an AMAZING job. No one can tell he ever had a cleft lip. Although, looking back on his "before" pictures, I often miss the face he was born with!

He hasn't had his palate repair yet because he is still too small, but I am hoping this coming year we will get it done so hopefully his speech can start to progress.

Hope Pierre's surgery goes well!

[VroomVroomLightning]

I am for sure subscribing to this! I cannot wait to hear more! You have a beautiful son!

[ndloewen]

Time for some introduction to the rest of the family...

http://i413.photobucket.com/albums/pp220/ndloewen/001-1.jpg

My hubby and I have been married for 10 years now. :lovestruc Hubby (Brad) is a paramedic by trade, but the hours were not working well for our family, so about 5 years ago, he decided to start his own business teaching first aid/cpr. He is very self-motivated and has since started 2 more companies that he currently runs (a paramedic school and a firefighter academy) and is currently working on another! The companies are still in the growing stages, which means that at this point, all income goes back into them, making finances tight. Hopefully it will all pay off in the end! But, thankfully, here in Canada, we have NO medical bills, other than prescription drugs.

I work as a nurse at our women's hospital, however currently with Noah's health, I have become his full time nurse, and only pick up the odd shift here and there at the hospital. Just enough to keep my license and my sanity!! Noah keeps me pretty homebound, other than the multitude of appointments, so the computer has become my friend!! :surfweb:

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_0471.jpg

:cutie: Kailyn, my 8 year old, is my strong-willed child. I am already dreading the teenage years!! She keeps us on our toes. She has a giving, caring heart, and loves to do for others. She is a little mother to Noah and drags him around as if he were her doll. She is ALL girl and loves anything Disney and princess related. She feels everything with huge emotion and I am so excited to watch her reactions to GKTW. But I am already dreading the emotional mess she will be once it's all over and we have to say goodbye!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_0763.jpg

:upsidedow Joshua, my 6 year old, is pretty much the exact opposite. He is my goofy but shy, gentle spirit. He is the homebody, and is looking forward to the trip, but he will also be quite happy to come home when it's over. And yes, he is all boy!! He is a huge Indiana Jones fan (although I've never allowed him to watch the movies) and pirates are also a big favorite.

Both Kailyn & Joshua have had to grow up fast since Noah was born. Their lives have been completely disrupted and turned upside down over and over again. So many disappointments and times we've had to say "no" because of Noah. They deserve this trip and I can't wait for them to be spoiled rotten and just be kids for a week!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_0733.jpg

And that leaves my baby...what more to say about Noah? :love: He is my sunshine, my joy...my little piece of heaven. He has taught us that life is not a race...to slow down and enjoy the little things. Like so many other kids out there, he has not had many chances to just be a typical 3 year old. We did a trip to California in June to attend a TPN Conference, and of course, did Disneyland! Noah has never been happier than those days we spent there and he soaked up the sights/sounds. I cannot wait for him to experience Disney World!

[kimmylaj]

what adorable children. it took me 3 tries to get a santa pic and noone is smiling. oh well . its one more thing checked off the list right. i cant wait to hear more about your plans

[VroomVroomLightning]

I love your pictures and your children are beautiful! I can't wait to hear more about your trip plans and about your wonderful family! Happy Holidays to you and your family! :santa:

[ndloewen]

Thanks for all the compliments! I think my kids are adorable too...although I may be slightly biased!!;)

TPN Clinic today...bad news and maybe, possibly good...??

The bad...there will be no surgery happening anytime soon. Yes, I'm calling this bad, because I was so hoping that we'd found a problem we could actually fix!! But our surgeon is not convinced that she can do anything to help Noah. The possible malrotation that I was hoping would be the source of some issues, may only be the heaviness of the GJ tube weighing down his intestines, causing it to look strange in the recent xrays, in which case, surgery would not help. As she bluntly put it, he could not survive a major abdominal surgery at this point, and to take that risk when we don't know if there will be any benefit is just not worth it. She also believes we have exhausted the TPN route as well and if we went that route again, he would not survive the line complications. We are at the end of what they can offer him right now. Difficult words to hear...

Which leads us to the possibly good news...it is time for a second opinion...new eyes to look at the situation. Our doctors are going to consult Toronto Sick Kids. At this point we will try to do a teleconference, rather than having to travel. Praying for some amazing new ideas to come out of this!! We need to get him more stable for our trip!

So for now, Noah is struggling and losing weight. And to top it all off, he is running fevers since yesterday. His lungs sounded ok at clinic, so likely a virus. The question will be whether I can keep him hydrated with just his GJ tube while this virus runs it's course or whether we will be headed to hospital for some rehydration.

My other boy, Joshua is sick too. :sick: Poor boy threw up on stage in front of everyone at the school Christmas concert. Oh, I felt SO bad for him!! It's been a rough couple of days all around...

Praying things look better in the morning...I am emotionally spent right now...:sad2:

I need to here from our wish coordinator. I need some dates!!!!

[llurgy]

I am so sorry to hear your news, its like you cant get a break!!
Poor Joshua too, feeling that ill and then throwing up on stage how embarrassing for him.

I check your blog daily and your family are in my thoughts constantly.

:grouphug: :sad1: :grouphug:

[VroomVroomLightning]

I hope the boys get better soon. I will say a prayer for them tonight along with your whole family. I hope they both get better soon! And for that Wish Coordinator hopefully they hurry up too ;) Good Luck with everything! Keep us updated as you can!

[ndloewen]

I finally got up the courage to call my wish coordinator again. I just hate to call them as I feel like I'm bothering them and should be waiting for them to call me. But I'm so glad I called! :yay: She hadn't done anything with our dates, because apparently we were supposed to fax her our passports, which I didn't know about. :sad1: And after today, she is off for Christmas until Jan 5th!

She did answer some of my burning questions though...

Can we leave on the earliest flight? Yes, there is a...gulp... 5am flight available on the dates we've requested that we could take. Yikes! I don't even want to THINK about what time we'll have to get up for that one!! But it gets us to Orlando at 1pm, whereas all other flights don't arrive until late evening. So, of course, that's the one we want.

Can we do lunch at crystal palace? Yes, they will include and make the arrangements for the character lunch so Noah will meet his Tigger.

Can we get a van for our rental? Yes, definately.

What about inflight oxygen? Noah required oxygen last time we flew, however, he is no longer on nighttime oxygen, so I am unsure as to whether he needs it this time or not. Our wish coordinator is off to deliver chocolates to our Respirologist's office this afternoon, and she will get the specifics from them as to Noah's needs.

She is sending out a Disney planning book...Yay!!

We may not have date confirmation until January, but I faxed our passports, so hopefully that will get the ball rolling!

Noah is still very unwell...we will probably end up heading in to hospital:sick:

[maroo]

Aw...bless your heart. Somehow I missed your post before this last one.

I hope that they can help Noah and get him re-hydrated! I know that makes an amazing difference.

Is Joshua feeling better? Poor thing, getting sick on stage! At a Christmas performance. How awful...for all of you guys!!

I hope you guys all get better soon!!!!!


Keep us posted as you can.

That flight sounds early...but you might just be so excited you can't sleep anyway! :banana: :banana: :banana: and getting there early will be so nice!!! :)

I can't wait for you guys to get dates! :) Woo Hoo!!

[HeatherSue]

Wow, you have 3 beautiful children! Noah is such a sweet looking little peanut! I'm sorry you are having souch a rough time right now. :hug: I'll pray that the doctors are able to help Noah get healthy enough to travel soon.

I can't wait to read more about your family and your trip!

[llurgy]

I have just been on Noah's blog, he needs all of our good wishes and prayers at the moment as he is in PICU after a 3 hour operation yesterday.
Poor Peanut :(

This is his blog page if anyone wants to read.
Noahs' Blog (http://noahgrantjohn.blogspot.com/)

Wishes for Noahs speedy recovery

Mandy

[HeatherSue]

Thanks for letting us know, Mandy. I just read the blog and I'm praying for little Noah.

[mom2lilnick]

Praying

[tinytreasures]

prayers

[ndloewen]

Thank you so much for your prayers...they are so needed. This has been such an unexpected turn of events and my heart breaks for my son...praying and believing that we WILL get our Noah his wish!!

I will not be posting on this board for now, but I will be keeping the blog updated, for those who wish to follow. It blesses me to see the many lives he continues to touch...thank you.

[maroo]

bumping this TR...

Please continue to lift this family in your prayers...

thanks!

[oklamomof4boys]

You are all in our prayers. The women from my church are coming over tonight for a Christmas Party- we will say a special prayer for Noah.

God Bless you all and I will be reading your blog for any updates.

Carol

[teresajoy]

Nichole, Noah and your family are in our prayers. :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[tinytreasures]

(((((NOAH and family))))) and prayers

[maroo]

bump on this TR...

Please see their blog...

http://www.noahgrantjohn.blogspot.com/

Lots of prayers and support still needed for this sweet little boy! And his Mom, Dad, sister and brother! :)

Nicole, we are still praying for you guys!!

[tinytreasures]

more prayers coming your way

[maroo]

bumping this TR again...

Please pray for Noah and his family. Noah had a bad day yesterday and they have to figure out a way to get IV access to give him his medicine.

check out his blog for more info...and please keep them in your prayers!

http://www.noahgrantjohn.blogspot.com/

[kimmylaj]

i was just over there, i am definitely praying for him and his family

[llurgy]

Seems like you are doing the same as me Mary
Not a day goes by without me looking at his blog at least a couple of times to get an update.
I was quite distressed late last night when I looked and saw that he had gotten worse again :(
Mandy

[mom2lilnick]

Praying, still praying hard.

[maroo]

Seems like you are doing the same as me Mary
Not a day goes by without me looking at his blog at least a couple of times to get an update.
I was quite distressed late last night when I looked and saw that he had gotten worse again :(
Mandy


You are right...

the ups and downs are getting to me, and I don't really even "know" this sweet family! I feel like I do, though! Ya know?

It seems like I always get my updates in the AM, because we must be off on our time zones...she seems to write when I am sleeping! But that does not keep me from checking multiple times a day!

I am not the only one praying...I have several friends that have now seen his blog and are also praying! That sweet video, too! Wow...

[ClareH37]

I've just read this thread and my thoughts and prayers are with little Noah and his family.

God bless.

[tinytreasures]

More prayers for Noah

[llurgy]

Nichole wrote last night on the blog at 10pm (1am my time) and the outlook is very bleak for poor Noah.
All prayers and good wishes are needed to help Noah and his family at this difficult time.
Mandy

[mom2lilnick]

Praying for a miracle!

[kimmylaj]

Praying for a miracle!

me too

[maroo]

praying for a miracle, here too!

and a bump on this TR...

[oklamomof4boys]

Add me to the ranks of people praying for a miracle.

[tinytreasures]

prayers coming your way

[tinytreasures]

Congrats on the Line
more prayers coming your way

[lucyanna girl]

Prayers for Noah and his family.

Penny

[mom2lilnick]

So glad to hear about the line. Praying still.

[tinytreasures]

Way to Rally Noah
more prayers you come of the Cpac soon

[DisneyMom5]

A good friend on here just told me about Noah! We are praying too. :grouphug:

[oklamomof4boys]

It is so incredible to read about this family's testimony about the power of prayer. I remember when Nathan was in the NICU years ago and somebody asked me how he was doing and I said, " he is alive" and I truly felt blessed to be able to say that. I imagine that is how this family feels. Noah certainly isn't out of the woods, let's continue to storm the Heavens with our prayers for this precious child and his family.

[maroo]

Carol, I could not agree more!

This is such an awesome answer to prayer...but they have a long road ahead.

Nicole...Noah...and family...we are still praying for all of you!!!!!!!!

:grouphug:

[mom2lilnick]

Continued prayers.. glad things seemed to be looking up. :)

[maroo]

If you guys have not seen the incredible recovery of this sweet wish child, you can see the whole story here:

http://www.noahgrantjohn.blogspot.com/

It is an amazing story...a Mom who loves her son...a son who fights for life...Inspiring to us all!

[oklamomof4boys]

If you guys have not seen the incredible recovery of this sweet wish child, you can see the whole story here:

http://www.noahgrantjohn.blogspot.com/

It is an amazing story...a Mom who loves her son...a son who fights for life...Inspiring to us all!

I'm glad you posted the link, Maroo. If you read the blog from when he went to the hospital a few weeks ago, read how critical he was and then see the picture from yesterday.......you can't help but smile through the tears. It is so beautiful. And the video- what a tear jerker.

My boys ask me any time they see me on the computer, " Are you checking on Noah?"

[tinytreasures]

keep fighting Noah :lovestruc

[tinytreasures]

great news about the move :lovestruc

[mom2lilnick]

Glad things are continuing to improve!

[3princesses+aprince]

Oh my god, I just started your pre trip report , and read all about Noah. I will keep him in my prayers too. And hope that you are all home soon!!:hug:

[teresajoy]

Has anyone heard from Nichole in the past few days?

[maroo]

No...

I was totally spoiled by the daily updates!!!!

My guess is that it is harder to get to the internet if she is on the floor? It might have been easier in the PICU. ???
I trust that no news is good news?? And hope she updates SOON! :) lol


**RUNS AND CHECKS THE SITE...

** And runs back!!! SHE UPDATED!!! YEAH! Uh...now I gotta go read it!


And am still praying. I think about that little guy all the time!

[llurgy]

The news is great, the discharge papers are being drawn up and they may escape next week!!!
I have been so worried for him, it's like I can breathe again.

Mandy

[maroo]

I am with you, Mandy! :)

I am so, so glad for them!

God is good! :)

[llurgy]

Hopefully we will see Nichole on here soon.
They were hoping that Noah was going to be released today and she wrote on her blog that she is hoping to resume her planning for Noah's trip :yay:

Mandy

[llurgy]

Noah's Home!!!!! :D

[VroomVroomLightning]

Noah's Home!!!!! :D

I just saw that myself!! I have been checking their blog lately. When I saw the videos of him with his brother and sister I started crying! Such a miracle and a blessing!!

WELCOME HOME NOAH AND FAMILY!!

[ndloewen]

Yes, we are home:cheer2:

I am so excited to be posting here again. I just could not even come to the boards these past few weeks, so terrified that we were going to lose Noah this time and he would never get his wish. But we have one amazing boy who shocked the socks off everyone once again, and one amazing God who answers prayer. We have come home knowing that these days are precious and we don't know how many more we will have. Once we lose this line, palliative care will likely be our only option. So this may very well be the last trip we ever take as a family. Just praying like mad that it will happen and that Noah will stay WELL!!

Things are crazy right now, trying to settle in and get used to the many changes with Noah's care. It will be alot more work to get him to Disney. We will be running 2 pumps almost continously, oxygen for the flight and night, etc...things I had hoped we had gotten rid of. So we have many details that will have to be sorted out, but for right now, I'm just happy to be back on the boards!

We were contacted by the wonderful people from the Big Give board a few weeks back and we recieved our first package yesterday! What a wonderful surprise to come home to! But more on that in my next post.

Huge, Huge thank you's to all of you who have followed our blog, prayed and posted faithfully. You have no idea how much it has meant to me. You have all blessed our family more than you will ever know.

Oh...and most important...we have official dates!!

February 24 - March 3

[llurgy]

Yes, we are home:cheer2:

I am so excited to be posting here again. I just could not even come to the boards these past few weeks, so terrified that we were going to lose Noah this time and he would never get his wish. But we have one amazing boy who shocked the socks off everyone once again, and one amazing God who answers prayer. We have come home knowing that these days are precious and we don't know how many more we will have. Once we lose this line, palliative care will likely be our only option. So this may very well be the last trip we ever take as a family. Just praying like mad that it will happen and that Noah will stay WELL!!

Things are crazy right now, trying to settle in and get used to the many changes with Noah's care. It will be alot more work to get him to Disney. We will be running 2 pumps almost continously, oxygen for the flight and night, etc...things I had hoped we had gotten rid of. So we have many details that will have to be sorted out, but for right now, I'm just happy to be back on the boards!

We were contacted by the wonderful people from the Big Give board a few weeks back and we recieved our first package yesterday! What a wonderful surprise to come home to! But more on that in my next post.

Huge, Huge thank you's to all of you who have followed our blog, prayed and posted faithfully. You have no idea how much it has meant to me. You have all blessed our family more than you will ever know.

Oh...and most important...we have official dates!!

February 24 - March 3

Such a relief to see you posting in this thread again because it means Noah is on the mend.
Been following your blog with my heart in my mouth for the main part. Some days I didnt want to read because I was scared of what may be posted.

Prayers and good wishes seem to have won through and I am so very, very glad that Noah has been given the go ahead to take his Wish trip.

Love
Mandy

[macntosh]

Seeing your dates, I so look forward to meeting your wonderful family in person. We may have to plan our own little Dis party at GKTW for all our special kids!

[iu97alum]

Welcome home!!

[maroo]

Yes, we are home:cheer2:

I am so excited to be posting here again. I just could not even come to the boards these past few weeks, so terrified that we were going to lose Noah this time and he would never get his wish. But we have one amazing boy who shocked the socks off everyone once again, and one amazing God who answers prayer. We have come home knowing that these days are precious and we don't know how many more we will have. Once we lose this line, palliative care will likely be our only option. So this may very well be the last trip we ever take as a family. Just praying like mad that it will happen and that Noah will stay WELL!!

Things are crazy right now, trying to settle in and get used to the many changes with Noah's care. It will be alot more work to get him to Disney. We will be running 2 pumps almost continously, oxygen for the flight and night, etc...things I had hoped we had gotten rid of. So we have many details that will have to be sorted out, but for right now, I'm just happy to be back on the boards!

We were contacted by the wonderful people from the Big Give board a few weeks back and we recieved our first package yesterday! What a wonderful surprise to come home to! But more on that in my next post.

Huge, Huge thank you's to all of you who have followed our blog, prayed and posted faithfully. You have no idea how much it has meant to me. You have all blessed our family more than you will ever know.

Oh...and most important...we have official dates!!

February 24 - March 3

Oh Nicole...

I was so scared for you guys, too. But our God is so good, isn't He! :)

I am in tears reading that you are back here....posting...planning. It is such a gift for your family.

You deserve this gift. God does not promise to answer all of our prayers...but He does promise to listen and do His will...

Anyway...I am so thankful you are back. :)

[kimmylaj]

hip hip hooray
:cool1: :cool1: :cool1:

[tinytreasures]

Seeing your dates, I so look forward to meeting your wonderful family in person. We may have to plan our own little Dis party at GKTW for all our special kids!


all the cool kids are going that week :cheer2:
I can't wait to meet you and your little miracle Noah

[LindaBabe]

Thank heavens he's home - you're home! This trip MUST happen. Sending prayers and pixie dust!

[LuvGoing2Disney7]

Yes, we are home:cheer2:


Oh...and most important...we have official dates!!

February 24 - March 3

BEST NEWS EVER!!!!!

I'm sitting here crying. I am so happy for you guys.

Keep showing them who's boss Noah!!

[oklamomof4boys]

Welcome Home! Welcome Back! God is good! We will continue to pray that everything falls into place for Noah's wish trip!

[ndloewen]

The day we arrived home from hospital, there was a package waiting for us. :) I had to hold the kids back so I could get the camera out. We were all very excited to see the Disney package and it felt like we could finally begin anticipating our trip.

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2802.jpg

Inside were puzzles and coloring books for each of the kids, as well as adorable fabric crayon holders...Minnie Mouse for Kailyn, Pirates for Joshua, and Pooh characters for Noah.

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2806.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2808.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2810.jpg

Thank you so much Kim for the pixie dust! pixiedust: These were a huge hit!! I am such a big fan of the crayon holders!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2831.jpg

[teresajoy]

Oh Nichole!!! I can't tell you how it does my heart good to see all three of your kids home smiling and opening their packages! Happy happy happy!!!!! That's me!!! party: party: party:

[oklamomof4boys]

Oh Nichole!!! I can't tell you how it does my heart good to see all three of your kids home smiling and opening their packages! Happy happy happy!!!!! That's me!!! party: party: party:

I agree! Seeing the 3 of them together brings tears to my eyes! I am almost as excited for your trip as I was for ours!

[maroo]

Oh Nichole!!! I can't tell you how it does my heart good to see all three of your kids home smiling and opening their packages! Happy happy happy!!!!! That's me!!! party: party: party:

I agree! Seeing the 3 of them together brings tears to my eyes! I am almost as excited for your trip as I was for ours!

I feel like we should all form a choir! I agree with both of you guys SOOOO much!!!!!


Here is to some celebrating!!!

:cheer2: :cheer2: :cheer2: :thumbsup2 :thumbsup2 :thumbsup2 :banana: :banana: :banana: :yay: :yay: :yay: :woohoo: :woohoo: :woohoo: :dance3: :dance3: :dance3: :rockband: :jumping1: party:


Shucks...I ran out of space for icons!


:)

[mom2lilnick]

Count me in too! Wonderful pics!

[tinytreasures]

Aww what cool pictures and presents

[lucyanna girl]

Beautiful babies! I have read your story and followed it day to day. Prayers for Noah are coming from Louisiana too.

Penny

[ndloewen]

Ok, so into planning mode today...can it really be January 19th already???

So many unknowns right now for our trip, it's driving me crazy!! We had asked about extending our trip as ideally we'd love to do an extra week on our own with Disney's buy 4/get 3 free deal...a super deal at the value resorts. That way we could have a much more relaxing trip and take lots of down time for Noah. We want to make the absolute most of what will probably be our last family trip with Noah.

Our wish coordinator told us that their policy states they cannot extend, but she also said what we do with our return ticket is up to us. So we are hoping to be able to change the return ticket to a later date. Not sure if we will have to pay a fee to do that, or how it will work?? The big problem is that we won't get our tickets until much closer to our trip. So I'm not sure what to do. I am thinking that we will just start planning for that second week without telling the kids in case it doesn't happen, and then hope it all works out??? But it's SO hard to plan details without definate dates!!:confused3

Yep, I just HAD to complicate things!!

We did find out that we have the flight times for the 24th:

Flight 1 departs at (gulp) 5am
Arrive in Toronto at 8:28am
Flight 2 departs at 10:15am
Arrive in Orlando at 1:05pm

Although the early departure time will be torture, (hopefully the kids will sleep on one of the flights), I'm very happy to be getting to Orlando in the afternoon so we will have the rest of the day to explore GKTW (after a nap of course!).

Noah is doing well...we are slowly settling in at home. It's always a big adjustment going from hospital life to home life. But we are so thankful for this time together as a family.

[oklamomof4boys]

Ok, so into planning mode today...can it really be January 19th already???

So many unknowns right now for our trip, it's driving me crazy!! We had asked about extending our trip as ideally we'd love to do an extra week on our own with Disney's buy 4/get 3 free deal...a super deal at the value resorts. That way we could have a much more relaxing trip and take lots of down time for Noah. We want to make the absolute most of what will probably be our last family trip with Noah.

Our wish coordinator told us that their policy states they cannot extend, but she also said what we do with our return ticket is up to us. So we are hoping to be able to change the return ticket to a later date. Not sure if we will have to pay a fee to do that, or how it will work?? The big problem is that we won't get our tickets until much closer to our trip. So I'm not sure what to do. I am thinking that we will just start planning for that second week without telling the kids in case it doesn't happen, and then hope it all works out??? But it's SO hard to plan details without definate dates!!:confused3

Yep, I just HAD to complicate things!!

We did find out that we have the flight times for the 24th:

Flight 1 departs at (gulp) 5am
Arrive in Toronto at 8:28am
Flight 2 departs at 10:15am
Arrive in Orlando at 1:05pm

Although the early departure time will be torture, (hopefully the kids will sleep on one of the flights), I'm very happy to be getting to Orlando in the afternoon so we will have the rest of the day to explore GKTW (after a nap of course!).

Noah is doing well...we are slowly settling in at home. It's always a big adjustment going from hospital life to home life. But we are so thankful for this time together as a family.

Our wish coordinator wouldn't let us extend our trip on our own dime- which kind of irked me since I knew others had been able to. What about calling the airlines and explaining the situation to them? Maybe they can work some magic for you!

You can not imagine how happy it makes us all to hear that Noah is doing well!

Carol

[VroomVroomLightning]

I am so happy to see you all home!! In your blog when I saw the video of Noah with his brother and sister I was so happy and cried tears of joy. I am so happy for you all! Can't wait to hear more about your plans!

[kimmylaj]

i hope you can extend your trip, as pp said it cant hurt to call the airlines and see what can be done. hopefully they will be able to help. regardless, i am sure that you will have a magical trip

[maroo]

Ok, so into planning mode today...can it really be January 19th already???

So many unknowns right now for our trip, it's driving me crazy!! We had asked about extending our trip as ideally we'd love to do an extra week on our own with Disney's buy 4/get 3 free deal...a super deal at the value resorts. That way we could have a much more relaxing trip and take lots of down time for Noah. We want to make the absolute most of what will probably be our last family trip with Noah.

Our wish coordinator told us that their policy states they cannot extend, but she also said what we do with our return ticket is up to us. So we are hoping to be able to change the return ticket to a later date. Not sure if we will have to pay a fee to do that, or how it will work?? The big problem is that we won't get our tickets until much closer to our trip. So I'm not sure what to do. I am thinking that we will just start planning for that second week without telling the kids in case it doesn't happen, and then hope it all works out??? But it's SO hard to plan details without definate dates!!:confused3

Yep, I just HAD to complicate things!!

We did find out that we have the flight times for the 24th:

Flight 1 departs at (gulp) 5am
Arrive in Toronto at 8:28am
Flight 2 departs at 10:15am
Arrive in Orlando at 1:05pm

Although the early departure time will be torture, (hopefully the kids will sleep on one of the flights), I'm very happy to be getting to Orlando in the afternoon so we will have the rest of the day to explore GKTW (after a nap of course!).

Noah is doing well...we are slowly settling in at home. It's always a big adjustment going from hospital life to home life. But we are so thankful for this time together as a family.

Wow!! It is totally happening!! :) YES!!!

I would go ahead and call the airlines...explain your situation...and maybe they can give you the policy on this. I would expect it would be a per ticket charge...it used to be $50...but...now days...who knows! :confused3

And I hope that MAW bought you the kind of ticket that you can change the dates...not one of the non-transferrable, non-refundable kind? Might check with MAW on that, too?

And is all of this different in Canada?

I do hope you guys get the extra time...because I think you are going to need some down time on your trip to make sure your little ones don't get sick.

That flight is early! :) Yikes! :) You might need to camp out in the airport! :rotfl:

[ndloewen]

So I've been doing a little digging:magnify: , and it looks like it shouldn't be a big issue to change our tickets once we actually get the tickets/confirmation numbers. So it may have to be done at the last minute, and we may have to pay a $50 fee for each ticket, depending on the tickets they bought for us. But I think it will be money well spent for our family. So I am planning for 2 weeks, leaving Feb 24 and returning March 10th. We are not going to tell the kids about the second week, leaving it for a surprise when we are down there. :ssst: How thrilled they will be, especially if we stay right in Disney!That should help with the let down of leaving GKTW.

So now the question is... where to stay our second week. Disney's buy 4 nights/get 3 free plus $200 Disney card looks great. But it has to be booked by Jan 24th, so I need to decide soon!! I am looking at the value resorts as that would be all we could afford, but I am worried it would be pretty cramped (Noah would be in a crib, but his supplies take up so much room). I think the kids would love the experience of staying right in Disney, and when I work out the cost, (minus the $200 that we would have spent in Disney anyways), it works out to only about $50/night. Don't think I can beat that outside of Disney! Any thoughts on the values??? I think I'm leaning towards Pop from the more positive reviews (and because they have frozen cokes that we all LOVE), although the kids would love the theming of Movies.

I also emailed our wish coordinator yesterday to let her know of the changes with Noah's medical situation:

1) We will need oxygen for the flights
2) We will also need oxygen for night while we are down there
3) We will have to bring all of Noah's bags of TPN in coolers on the flight and he will be running his TPN during the flight, which all needs to be cleared by the airline

Hopefully I will hear back from her soon in regards to what I need to do to get that all in place. I will feel better once I know that is all arranged.

Is this all actually happening?? :faint:
My brain is still having trouble catching up...going from thoughts of never bringing Noah home again, to full out Disney planning!! Praying...praying that it all falls into place. Noah deserves this...we all desperately need this!!

[oklamomof4boys]

I am so glad things are falling into place! You are right, you all so deserve/need this trip! I've never stayed on property at WDW so I can't really give you any advice there. But my brother and SIL, who are Disney snobs ( they now HAVE to stay in the Grand Floridian- one time they stayed in some suite that cost nearly $2000 a night! And they stayed there several nights! Even if I had that kind of money, I can't justify spending that much per night)Anyway, before my brother started making the big bucks, they stayed at the Pop numerous times and they loved it!

[autumnpalm]

We loved our time at the POP. We were there last July and it was perfect for us. Our room was clean and comfortable. The grounds were very well kept and the huge icons were so much fun! Great buses, wonderful food court... I would not hesitate to stay at a value again. They are such good value for what you pay. We were in the 50s building on the top floor facing the lake... our room was dead quiet and we had such a gorgeous view from the balcony! Plus all the POP buildings have elevators which is great.

I would 100% recommend the POP.

[maroo]

I am so excited that you get an extra week!

You won't need much help at all planning! :) You will be able to really relax! And have a REAL vacation! The best vacation EVER!!!!!! :)

I don't know anything about the values! But, we are looking at staying at the POP when Lisa and I go to see if that would work for us for the next big trip. So, let me know how it goes! :)



I am praying, too...that will work out for you guys to be able to go! And hopefully everyone will stay healthy!! But even if you have to go really slow...you will have time to!! :)
I would love to just hang out at GKTW several days when you are there...take in the horseback riding...and all of the parties...and character greets!...and then REALLY do Disney stuff...everything you missed when you were at GKTW when you go to the POP! :) Woo Hoo!!!

[kimmylaj]

WOOHOO so glad to hear you will be able to stay an extra week. full steam ahead on planning

[ndloewen]

We were very excited to open the mail this evening and discover 2 packages!! First, a teeny package from maroo:

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2867.jpg

Hmmm...what could it be??

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2869.jpg

Kailyn reading the beautiful note your wrote her...Noah scratching his head, wondering what is going on...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2870.jpg

Inside were 2 beautiful bracelets...one for Kailyn and one for myself.

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2875.jpg

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2878.jpg

Maroo, thank you SO much! Kailyn & I both love the bracelets. I love the colors you chose for both of us.

Package #2...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2879.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2880.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2881.jpg

A pirate shirt for Joshua (and also showing off his new missing front tooth). I LOVE this material...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2884.jpg

My kids being goofballs...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2883.jpg

An adorable Cinderella outfit for Kailyn...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2890.jpg

And of course, twirling time...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2894.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2893.jpg

Can you tell she loves it??

And we just couldn't resist taking this picture. Kailyn's blanket made by Grandma!! Can you tell she's a princess fan?? She is so thrilled to have a dress to match her blanket!:)

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2892.jpg

April, thank you so much!! These are both adorable and you did a fantastic job! Can't believe you apologized in your letter for your sewing skills. They look amazing!!

Maroo and April, thank you for the pixie dust pixiedust: Thank you for blessing our family and making my kids feel so special today.

[maroo]

Oh my goodness! I can't believe her dress matches her bed! :)

When Lauren got Big Give stuff, she wanted to redecorate her room! I can't let her see that!!!!

I am glad you liked the bracelets! :)

You guys are going to have a wonderful time!!! :)

[mindymouse1]

AAAAAAWWWWWWWW!!!!!!!!!

They are all so cute!! I think you and I are both almost or more excited than our kids :rotfl2: !!

They are adorable. Hope you all have a great trip!!!

[macntosh]

Those bracelets are amazing Maroo. I hope you give those to all the Big Give girls....:cool1:

[maroo]

Those bracelets are amazing Maroo. I hope you give those to all the Big Give girls....:cool1:



Well, now...we will just have to see...:rolleyes1

But you should find out very soon... :ssst:



;)

[3princesses+aprince]

Hello, I just saw that you and Noah were home, so glad to hear that he is doing well:)

[dmbfan]

Love the pictures, and the gifts are so special. So glad Noah's trip is going to happen, and more so that you are all home. You will be coming home a couple of weeks before we leave, so you will have to give me an update on how the TPN and and such went.

[ndloewen]

My trip ticker no longer says one month!!!!!!!!!! We are now counting in weeks!!!

Got a package from the wish foundation...more paperwork!! Another huge stack to sign...I think we've signed more for this trip that when we bought our home! I had to get our doctor to fill out more forms as well. Since so much had changed with Noah's medical condition since the start of the planning of this trip, we had to get our doc to ok him for travel once again. Love our doc! He had them faxed back to the foundation within a few hours!!

Oh, our package did contain a bit more than paperwork. There was also a hat for Noah, stickers, and Birnbaum's Disney World book. I had also picked up the Unofficial Guide last week with a gift certificate from Christmas, so we've been having lots of fun looking through the travel books.

I actually managed to get a shift in at work today which was a nice break from everything...spent my breaks browsing through the Unoffical Guide. I'm loving that book and I think I'm more excited than the kids right now!!

30 MORE DAYS!!!

[VroomVroomLightning]

I am so happy that you and your family are going to be able to experience this togethr. I can't imagine a family who deserves this more than you and your family! I can't wait to hear some more of your planning!

[mom2lilnick]

Sounds like things are going well! You will have an awesome time!!

[ndloewen]

So I'm getting a bit worried again...

Noah's IV antibiotics to treat the e. coli infection ended on Friday. Since then he has not looked great. His chest is cruddy, his nose is a constant fountain, he's been sucking back the ventolin...likely just a virus he's picked up, but with Noah...it is always worriesome. At least no fevers, and we can keep him well hydrated with his line, but those lungs worry me.

Started doing some packing this weekend of Noah's supplies...yes, we still have a month to go, but preparing ahead, just in case a hospital stay is in the near future. I have learned from our last trip, and I am hoping to be more organized this time. I made up bags for each TPN hookup/unhooking so that we will just be able to grab a bag when we need it and it will have all the supplies in one place. Hopefully this will save me the grief of searching through bags, looking for supplies each day. Of course, I can't pack the actual TPN or meds yet, and I still need to figure out all the other supplies that we will need. But it's a start, and I no longer feel quite so overwhelmed with the thought of packing for Noah. I also now know exactly what I still need to order from our TPN company to make sure that we are covered for supplies when we get home as well.

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2899.jpg

[maroo]

Officially starting the prayer chain for Noah again. :angel: That worries me, too, honestly. Because that is almost the same thing you said last time...that it was a virus. But you have a line this time! So that is really good!! :)

You look so organized! I can't believe all of that stuff.

I believe God gave Noah to you because He knew you would take AWESOME care of him! :grouphug: You are as much a gift to him as he is to you.

I went walking today. I am training for a 13K race in DISNEY! In October. But anyway. I have downloaded some inspirational music on my iPhone and "Little is Much" is one of my favorites! It helps me keep going when I want to quit. Just one of the little ways your sweet Noah has touched a life of someone you guys have never even met.

[oklamomof4boys]

So I'm getting a bit worried again...

Noah's IV antibiotics to treat the e. coli infection ended on Friday. Since then he has not looked great. His chest is cruddy, his nose is a constant fountain, he's been sucking back the ventolin...likely just a virus he's picked up, but with Noah...it is always worriesome. At least no fevers, and we can keep him well hydrated with his line, but those lungs worry me.

Started doing some packing this weekend of Noah's supplies...yes, we still have a month to go, but preparing ahead, just in case a hospital stay is in the near future. I have learned from our last trip, and I am hoping to be more organized this time. I made up bags for each TPN hookup/unhooking so that we will just be able to grab a bag when we need it and it will have all the supplies in one place. Hopefully this will save me the grief of searching through bags, looking for supplies each day. Of course, I can't pack the actual TPN or meds yet, and I still need to figure out all the other supplies that we will need. But it's a start, and I no longer feel quite so overwhelmed with the thought of packing for Noah. I also now know exactly what I still need to order from our TPN company to make sure that we are covered for supplies when we get home as well.

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2899.jpg

I am sending out the email to my prayer group right now! Could they put him on another round of antibiotics? Please keep us updated!

Carol

[mom2lilnick]

Praying that Noah stays healthy. Hugs!

I remember Nick's TPN days all too well with those flashbacks. Hugs and more hugs.

[ndloewen]

Officially starting the prayer chain for Noah again. :angel: That worries me, too, honestly. Because that is almost the same thing you said last time...that it was a virus. But you have a line this time! So that is really good!! :)

You look so organized! I can't believe all of that stuff.

I believe God gave Noah to you because He knew you would take AWESOME care of him! :grouphug: You are as much a gift to him as he is to you.

I went walking today. I am training for a 13K race in DISNEY! In October. But anyway. I have downloaded some inspirational music on my iPhone and "Little is Much" is one of my favorites! It helps me keep going when I want to quit. Just one of the little ways your sweet Noah has touched a life of someone you guys have never even met.

Thanks so much maroo for the pick-me-up,

Yes, it is what I said last time...he just can't seem to shake the viruses lately with his damaged lungs. Although hopefully the better nutrition and hydration this time will help. This morning is no better, no worse. I'm hoping to wait out today as it is a busy day for the other kids (gymnastics and church clubs), but if his breathing gets any worse, we will be headed to the ER. If no improvement, I'll take him in to my ped. tomorrow.

Ok, I'm SO jealous that you are doing the Disney 13K!! I am SO going to do that someday! I did a half marathon here the year before Noah was born and loved it! Can't imagine how much greater being at Disney would be!!

Thanks Amy and Carol for the prayers!!

[maroo]

Thanks so much maroo for the pick-me-up,

Yes, it is what I said last time...he just can't seem to shake the viruses lately with his damaged lungs. Although hopefully the better nutrition and hydration this time will help. This morning is no better, no worse. I'm hoping to wait out today as it is a busy day for the other kids (gymnastics and church clubs), but if his breathing gets any worse, we will be headed to the ER. If no improvement, I'll take him in to my ped. tomorrow.

Ok, I'm SO jealous that you are doing the Disney 13K!! I am SO going to do that someday! I did a half marathon here the year before Noah was born and loved it! Can't imagine how much greater being at Disney would be!!

Thanks Amy and Carol for the prayers!!

You obviously have your hands very full right now! But that has helped me SO MUCH to get back into exercising. I finally found a great motivator! Disney!


Please keep us posted on Noah. We are praying!!! You guys hang in there! :)

[lizet313]

WOW What a Journey you and your family has had. I will be going to DW as well in two weeks. Feb 11-15 I am so glad your little boy's wish is coming true. Keep your hopes up your kids depend on you so much. You have a strong characteristic that it's called Motherhood. I understand you could never give your kids enough and wonder if there is something else you could do to help. Just remember you already give them everything they need The love the affection the care everything they could possibly look for and wait for. I will pray for your family and if there's anything I can do to help dont hesitate to ask. Wish you the best and can't wait to hear from your trip. Dont forget the pictures.

With love Lizet313

[oklamomof4boys]

How's our little guy doing? Okay, I guess technically he's not "our" little guy, but he certainly has a special place in all of our hearts! Of course, I feel like I "know" all of these special wish kids!

We've certainly been keeping up a prayer vigil around here!

Carol

[ndloewen]

So yesterday turned into a crazy day. I took Noah in to the pediatrician, who took one listen to Noah's chest and sent us off to the ER. I had been hoping to avoid having to go that route, but off to the ER we went. His O2 sats were low when we got there so we started oxygen and he got 3 back to back ventolin/atrovent masks which seemed to help open up his chest. Did a chest xray, bloodwork, blood gas and cultures. His bloodwork all looked good, and the cultures are pending, but the chest xray showed a significant pneumonia on Noah's right side. Thankfully the ER attending was one of the docs who knows us pretty well. So after a few hours of observation, he left the decision up to me. We could admit him, do IV antibiotics and oxygen, or I could take him home, do antibiotics and continuous oxygen at home. Since his bloodwork and gas looked good, no fever, and Noah himself looked ok, I felt comfortable taking him home. I just couldn't bear the thought of another hospital stay when we've only been home less than 2 weeks.

So we are home...for now. Hopefully this is where we will stay. The whole time we sat in the ER yesterday, I just kept thinking 26 more days! I am worried about how we will get through 2 weeks down there without some medical issue. But I have to believe that his lungs are going to do great in that magical healing Florida air!!

Got your package, Meg! What a wonderful surprise this was after our crappy day yesterday. Couldn't have come at a better time...will post pictures once things settle down here a bit!

[maroo]

So yesterday turned into a crazy day. I took Noah in to the pediatrician, who took one listen to Noah's chest and sent us off to the ER. I had been hoping to avoid having to go that route, but off to the ER we went. His O2 sats were low when we got there so we started oxygen and he got 3 back to back ventolin/atrovent masks which seemed to help open up his chest. Did a chest xray, bloodwork, blood gas and cultures. His bloodwork all looked good, and the cultures are pending, but the chest xray showed a significant pneumonia on Noah's right side. Thankfully the ER attending was one of the docs who knows us pretty well. So after a few hours of observation, he left the decision up to me. We could admit him, do IV antibiotics and oxygen, or I could take him home, do antibiotics and continuous oxygen at home. Since his bloodwork and gas looked good, no fever, and Noah himself looked ok, I felt comfortable taking him home. I just couldn't bear the thought of another hospital stay when we've only been home less than 2 weeks.

So we are home...for now. Hopefully this is where we will stay. The whole time we sat in the ER yesterday, I just kept thinking 26 more days! I am worried about how we will get through 2 weeks down there without some medical issue. But I have to believe that his lungs are going to do great in that magical healing Florida air!!

Got your package, Meg! What a wonderful surprise this was after our crappy day yesterday. Couldn't have come at a better time...will post pictures once things settle down here a bit!

Oh no!!!! Bless your heart!

So glad you are a nurse and can manage that stuff at home!

I am glad you are going to get two weeks...so you can take it easy and hopefully not have any issues!! :)

Keep us posted.

I could not decide yesterday if no news was good news...or not. But I am praying for you guys either way! And He knows! :)

Hang in there!

[iu97alum]

Bless your heart. Home always makes recovery easier!!

[lizet313]

Hope he is feeling better. My thoughts and prayers are with you and your family. :flower3: :grouphug:

[oklamomof4boys]

I'm glad you are able to take care of him at home- I'm sure that will be much easier on all of you. We'll be praying that each day is better than the day before.

Carol

[autumnpalm]

Oh, I'm so glad it got to you!!

More prayers coming your way from Toronto.:grouphug:

[kimmylaj]

hope he feels better soon

[ndloewen]

A couple of weeks ago, I got a pm from Meg, asking if she could bless our family with a care package...

The package arrives...(It actually arrived the day before, but everyone had to wait until Noah was feeling up to opening it!)

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2906.jpg

Ripping open the paper...Noah's favorite part!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2907.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2908.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2921.jpg

Despite not feeling so great, the gifts were definately a hit with Noah...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2915.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2922.jpg

Kailyn showing off her loot...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2917.jpg

Joshua and some of his loot...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2926.jpg

We especially love the flashing Disney pins! They will be lots of fun to wear at the parks!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2925.jpg

And someone knows the way to my heart! A Tim's card!! Mmmmmmmmmmm!!! Can't wait to get myself a double/double, or maybe one of those new latte's!! For all you US disers, Timmy's has the absolute best coffee here in Canada!! Kailyn took the picture, so the actual gift card got a bit cut off:)

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2923.jpg

:thanks: It was like Christmas here this morning!! Meg, thank you so very much. Your generosity has blessed us in a big way today. Thank you for the pixie dustpixiedust:

[mom2lilnick]

That is wonderful!

[lizet313]

WOW those gifts look great. I am so happy to see Noah is feeling better. Joshua and Kaylin both look very excited.

[QueenMomof2]

I'm new here and have been reading your Pre TR. I'm so happy your family has been blessed with a trip. Your little man is so strong and has been through so much I can't imagine anyone more deserving.

Also what complete DOLLS your kids are they are just so adorable. Noah's smile just makes me smile when I see it. I'm so glad he's feeling better.

We're in Canada too I'm so looking forward to your TR I can't wait to hear about all the magic you experience.

Thanks for sharing and allowing us to be part of your trip. :)

[ndloewen]

I'm new here and have been reading your Pre TR. I'm so happy your family has been blessed with a trip. Your little man is so strong and has been through so much I can't imagine anyone more deserving.

Also what complete DOLLS your kids are they are just so adorable. Noah's smile just makes me smile when I see it. I'm so glad he's feeling better.

We're in Canada too I'm so looking forward to your TR I can't wait to hear about all the magic you experience.

Thanks for sharing and allowing us to be part of your trip. :)

Welcome! Yep, that smile of Noah's...what can I say? It makes everything so worth it!!:)

What foundation are you working with here in Canada??

[maroo]

How cool!! What a great package! :)

Your pictures are great. Noah looks so happy! And Kailyn and Joshua got some cool stuff, too!
I like the small lunch boxes (is that what you would call them?) :confused3

I hope Noah continues to feel better and better!! Keep us posted!

[QueenMomof2]

Welcome! Yep, that smile of Noah's...what can I say? It makes everything so worth it!!:)

What foundation are you working with here in Canada??

We got a call from Make A Wish on Monday so that's who we were referred to. I'm just waiting on the consent forms to get here and then they said they contact her Neuro. After that they said if he okays it then she will get her wish.

I was surprised, they make it seem so easy. I can't imagine it's quite that easy. ;)

[autumnpalm]

Aww I love the pictures! I'm glad the wrapping paper stayed on, I was a little nervous it would get all torn up.:goodvibes I had my fingers crossed that everyone would like everything.:goodvibes

Have a great weekend!!pixiedust: pixiedust:

And lattes?! And Timmy's? Why have I not seen those yet?:rotfl:

[ndloewen]

Noah seems to be doing better today, so hopefully those antibiotics are finally kicking this pneumonia. Still struggling some with his breathing and our home care nurse brought us a nebulizer so we could do some ventolin masks at home.

We also found out that our home care nurse will be in Florida on vacation the same time as us!! She is hoping to help us out for a day, or even just give us some respite one evening while we are there. She is like family to us, so we are excited to spend a bit of time with her out there. Do you think her and her hubby would be able to come to GKTW for part of a day or an evening to help out?? I'm not sure how it works with visitors there.:confused3

The hospital gave the kids some extra chocolate advent calendars, so we are using them to start our official disney countdown! Wow, so much to do between now and then!!:scared: We started making packing lists yesterday for everyone. I need to search out Amber's amazing list and see what I'm all still missing.

[ndloewen]

And lattes?! And Timmy's? Why have I not seen those yet?:rotfl:

I've just seen advertisements for the new lattes but haven't tried one yet. They look oh SO yummy!!:coffee:

Oh, I just saw your pretrip report...the Yacht Club and then Disneyland!! That's fantastic!! And nice to put a face to a name.

[dmbfan]

Nichole, what great pictures of the kids with their gifts...Ohhh I am such a tearful person, so of course seeing Noah's face brought tears to my eyes. Amazing how strangers can turn into true friends for you and your family so fast. Such a blessing this board is.

I was going to ask if you if you were able to get a nurse or someone else to go on the trip to help you? My sister is coming ( she is paying her way cause our PCA does not touch Jake's line or TPN) with us to help as a third set of hands with all of Jake's stuff.

By the way, I pray for Noah everyday that when I got to your blog I do not see Noah in the hospital, his last stay had me worried for sure. I saw and commented on your post on the TPN board about the locks, how are they going for you?

[ndloewen]

That's great that you get your sister. We only have 2 nurses who we would even consider...one is on mat leave and the other is the one who will be there at that time anyways. And as nice as the help would be, I really wanted this to be about our family, and not have another person there all the time. So I think for us, this will work out best.

Nichole, what great pictures of the kids with their gifts...Ohhh I am such a tearful person, so of course seeing Noah's face brought tears to my eyes. Amazing how strangers can turn into true friends for you and your family so fast. Such a blessing this board is.

I was going to ask if you if you were able to get a nurse or someone else to go on the trip to help you? My sister is coming ( she is paying her way cause our PCA does not touch Jake's line or TPN) with us to help as a third set of hands with all of Jake's stuff.

By the way, I pray for Noah everyday that when I got to your blog I do not see Noah in the hospital, his last stay had me worried for sure. I saw and commented on your post on the TPN board about the locks, how are they going for you?

[ndloewen]

So I found this magical coutdown clock that you can download onto your computer. You enter the time that you are leaving for Disney, and it counts down to the exact milisecond. It's actually kind of freaky...I'm watching the time just flying away on me and I think it's making me more panicky!!:scared:

23 Days, 14 Hours, 52 Minutes, 47 Seconds...no wait 38...33...

Magical Countdown Clock (http://www.magicalmountain.net/wdwcountdownclock/WDWCountdownClock.asp)

[oklamomof4boys]

Noah seems to be doing better today, so hopefully those antibiotics are finally kicking this pneumonia. Still struggling some with his breathing and our home care nurse brought us a nebulizer so we could do some ventolin masks at home.

We also found out that our home care nurse will be in Florida on vacation the same time as us!! She is hoping to help us out for a day, or even just give us some respite one evening while we are there. She is like family to us, so we are excited to spend a bit of time with her out there. Do you think her and her hubby would be able to come to GKTW for part of a day or an evening to help out?? I'm not sure how it works with visitors there.:confused3

The hospital gave the kids some extra chocolate advent calendars, so we are using them to start our official disney countdown! Wow, so much to do between now and then!!:scared: We started making packing lists yesterday for everyone. I need to search out Amber's amazing list and see what I'm all still missing.


I would think it would be fine to have visitors. I would call GKTW to find out but I know before our trip our wish coordinator told us that if we had a family member that wanted to pay their own way they could stay with us at GKTW ( the villas hold 7)- and that was to stay the entire time with us. So surely you can have visitors-especially if you explain the situation.

I'm glad Noah is feeling a bit better. You all sure are in my prayers and thoughts a lot. I think EVERYBODY is very excited about your upcoming trip.

Carol

[ndloewen]

By the way, I pray for Noah everyday that when I got to your blog I do not see Noah in the hospital, his last stay had me worried for sure. I saw and commented on your post on the TPN board about the locks, how are they going for you?

The locks are going well so far. It's only been 2 weeks, so hard to tell yet, but we've had no issues (other than pharmacare and our hospital refusing to pay for them. Thankfully they aren't too expensive.)

[autumnpalm]

Oh my gosh, your trip is getting soooo close!! I am just so excited for you to go!:grouphug: I can't believe you have only 23 more days!

I pray for little Noah (and the rest of you!) every night, I am so glad his Wish is becoming a reality.:goodvibes

And hmmm I wonder if they have the lattes in Ontario yet? I'll have to check next time I'm in there! Funny, I don't like coffee but I like lattes.:confused3 I hope they have flavoured ones!

[jennipooh]

I just found your post and have fallen in love with all your kids.

I have a Noah, myself, and of course that name caught my eye right away!!

My Noah is 9 and we love Disney World! He will turn 10 on February 24th..... the date your begin your trip!!! People are always asking us if we get bored with traveling to Disney World ........ no way!

I know your family will have a great time. I know your older two love their little Noah and take great care of him and deserve the extra attention and care-free time they will be receiving at Disney.

Also, how wonderful that Kailyn and Johsua have been included in the care packages! How sweet the Big Give Board is... I would like to hear more about them. They sound so sweet, as well as the others who have sent your kids so many neat things. Pre trip souvenirs are a wonderful way to get excited for Disney World.

You and your family seem blessed in so many ways. The love that you all share is truly special and I can tell that you all know and appreciate that. Also, how wonderful it is that you are a nurse and are able to care for Noah so well and can depend less on others to care for him. I think at Disney World it will give you so much more family time than if you needed to count on another nurse to help you the whole time.

You are very wise to have asked for that extra week at Disney World. Normally, it could get pricey, but the 4/3 deal will be awesome + the 200 gift card...wow.

We prefer 10-12 days. It gives you so much more time to relax, knowing that you have a few days to visit each park. It gives you more time to enjoy the pools, mini-golf, water crafts, etc. And you don't have to feel like down time at the resort is wasting your shot at park time.

GKTW sounds really neat, but I think one of the All-Stars will be a nice treat for you guys. Staying "inside the magic" will be so very special and convenient. If you will be using Disney Transportation...which is so convenient, then I highly recommend Sports over Movies and Music. Sometimes the three resorts share a bus! We have stayed at All-Star Sports and enjoy the fact that we are the first on and off the buses!!!

As for your older kids, I could not tell if there were lanyards and pins inside the care packages. But I think pin trading would be a wonderful activity for them while at the parks and would give them some one on one cm attention.

When my Noah was little he was not ready for pin trading and only collected a couple of special pins. Then when he was 8, the "Pin Fairies" started visiting our room each night and left a few pins for him to trade (it is very easy for him to let go of the girly pins, but sometimes he chooses to keep other pins). He loves the interaction with the CM's as well as trading for the pins he wants. This saves me tons of $$$$ as I buy the pins at the Disney Store and the internet for next to nothing before we go!!!!

Prayers for your family and I hope you have a wonderful Disney trip.

[ndloewen]

I just found your post and have fallen in love with all your kids.

I have a Noah, myself, and of course that name caught my eye right away!!

My Noah is 9 and we love Disney World! He will turn 10 on February 24th..... the date your begin your trip!!! People are always asking us if we get bored with traveling to Disney World ........ no way!

I know your family will have a great time. I know your older two love their little Noah and take great care of him and deserve the extra attention and care-free time they will be receiving at Disney.

Also, how wonderful that Kailyn and Johsua have been included in the care packages! How sweet the Big Give Board is... I would like to hear more about them. They sound so sweet, as well as the others who have sent your kids so many neat things. Pre trip souvenirs are a wonderful way to get excited for Disney World.

You and your family seem blessed in so many ways. The love that you all share is truly special and I can tell that you all know and appreciate that. Also, how wonderful it is that you are a nurse and are able to care for Noah so well and can depend less on others to care for him. I think at Disney World it will give you so much more family time than if you needed to count on another nurse to help you the whole time.

You are very wise to have asked for that extra week at Disney World. Normally, it could get pricey, but the 4/3 deal will be awesome + the 200 gift card...wow.

We prefer 10-12 days. It gives you so much more time to relax, knowing that you have a few days to visit each park. It gives you more time to enjoy the pools, mini-golf, water crafts, etc. And you don't have to feel like down time at the resort is wasting your shot at park time.

GKTW sounds really neat, but I think one of the All-Stars will be a nice treat for you guys. Staying "inside the magic" will be so very special and convenient. If you will be using Disney Transportation...which is so convenient, then I highly recommend Sports over Movies and Music. Sometimes the three resorts share a bus! We have stayed at All-Star Sports and enjoy the fact that we are the first on and off the buses!!!

As for your older kids, I could not tell if there were lanyards and pins inside the care packages. But I think pin trading would be a wonderful activity for them while at the parks and would give them some one on one cm attention.

When my Noah was little he was not ready for pin trading and only collected a couple of special pins. Then when he was 8, the "Pin Fairies" started visiting our room each night and left a few pins for him to trade (it is very easy for him to let go of the girly pins, but sometimes he chooses to keep other pins). He loves the interaction with the CM's as well as trading for the pins he wants. This saves me tons of $$$$ as I buy the pins at the Disney Store and the internet for next to nothing before we go!!!!

Prayers for your family and I hope you have a wonderful Disney trip.

Thank you so much for all the great advice. Noah is a fabulous name! ;) Kailyn has been asking about the pin trading. They don't have any pins yet. I think she'd really love it. Joshua is my very shy one, and I don't know how interested he'd be. Noah is too young for it. But I should try to get to our local Disney store and see if I can find a few for the kids...

I wanted to book in at the All Star Movies, but it was booked for our dates, so we are booked in at my second choice, Pop Century for our second week. It looks like lots of fun for the kids. We are renting a van as I think the buses would just be far too stressful trying to drag all of Noah's pumps/stroller/supplies along with us to the parks. Our second week still is not for sure, as we need to wait for our airline tickets from the wish foundation. So I'm just hoping it will all fall into place at the last minute!

[ndloewen]

So...got a call from a friend of mine today, to talk about the weekend we had booked with them...

Weekend????...what weekend???...oh yeah!!

A few months back, we had booked a winter getaway with a small group of our close friends from church at Thief River Falls in Minnesota at 7 Clans resort which is about 2 1/2hrs away from here. They have a fantastic indoor water park that the kids love. I had actually forgotten about booking it, until today, and now I'm a bit panicked about the dates. The weekend is Feb 20-22, and then we leave on the 24th for Disney!!:crazy2:

So, after discussing it, we decided that since our wish foundation does not do a send off party, we would still go, and make this our own send off party. :rainbow: We will be going with our closest friends, who have been there for us, through everything we've gone through with Noah. So what better way to have our own celebration. :) It's going to make things so nutty though, as we will get back on Sunday afternoon, and then have only one day to get repacked for Disney.

Kailyn is so cute this afternoon...she packed her carry on bag, found her Mickey ears from our last trip and is now wearing them as she watches Disney rides on youtube. She is SO into the spirit...

Praying that we will get there. I can't imagine the disappointment if Noah gets sick and we have to cancel.

[tinytreasures]

wow you are coming to Minnesota
to bad I am over a 6 hour drive there :sad2:
at least we get to meet at GKTW;)

[maroo]

Thank you so much for all the great advice. Noah is a fabulous name! ;) Kailyn has been asking about the pin trading. They don't have any pins yet. I think she'd really love it. Joshua is my very shy one, and I don't know how interested he'd be. Noah is too young for it. But I should try to get to our local Disney store and see if I can find a few for the kids...

I wanted to book in at the All Star Movies, but it was booked for our dates, so we are booked in at my second choice, Pop Century for our second week. It looks like lots of fun for the kids. We are renting a van as I think the buses would just be far too stressful trying to drag all of Noah's pumps/stroller/supplies along with us to the parks. Our second week still is not for sure, as we need to wait for our airline tickets from the wish foundation. So I'm just hoping it will all fall into place at the last minute!

That is so good to hear about All Star Sports! Sounds like we will be staying there in October for a race (that I am WALKING, btw).

Your kids will probably love the pin trading!

You can buy the pins on eBay. I don't normally buy stuff on eBay...but Lisa did get a whole bunch of pins from there for fairly cheap.

Then we trade the "cheap" ones that are duplicates or that we don't like...we trade with the CM's and get ones we DO like! And it is a LOT cheaper that way!

You can also buy them from the Disney Store online, too.

[kimmylaj]

that sounds like a perfect send off party with your closest friends
also prayers said, pixie dust tossed, and fingers and toes crossed that noah stays healthy and takes this magical trip.

[ndloewen]

wow you are coming to Minnesota
to bad I am over a 6 hour drive there :sad2:
at least we get to meet at GKTW;)

Yes, I'm excited to meet everyone!!:grouphug:

[ndloewen]

Got a call from our wish coordinator this afternoon.

:rainbow: OUR TRAVEL PACKAGE IS READY!!!!!!!:rainbow:

Yahoo:cheer2: :cheer2: :cheer2: :cheer2: :cheer2: :cheer2:

So, no big fanfare in recieving our package...but that's ok. My hubby can go pick it up at their office anytime. Of course, I will be begging him to go do it tomorrow!! Can't wait to have our tickets and everything in my hands!!!

We also heard from Noah's nurse from the respirology clinic. She called to say that the paperwork for the airlines was now filled out and faxed to them. Our oxygen concentrator should be delivered to our house on Feb 19th. We did decide to do one more overnight oximetry study next week, so that we will know exactly what his new oxygen needs are for sleeping. So slowly the medical stuff is getting sorted out. Noah's lungs continue to improve, so hopefully we will only need a few more days of 24/7 oxygen and can go back to just night use.

And, maroo, thank you SO much for the amazing excel spreadsheet you sent me today to help plan our trip. It is AWESOME!!! :thanks:
:disrocks:

[autumnpalm]

Oh, I am so glad Noah's lungs are improving! And I hope the Florida air will help him heal as well.:goodvibes

It's such a great feeling to have all the tickets and confirmations in your hands. Exciting!!pixiedust:

[kimmylaj]

woo hoo, its getting close:cool1: :cool1: :cool1:

[oklamomof4boys]

I am so glad that things are coming together-especially that Noah's lungs sound better! I can't wait for you to get your packet and get those airline tickets changed!

Carol

[jennipooh]

Wow, TWO trips back to back. FUN

Also, try mousepinsonline.com for pins.

[jennipooh]

I just thought of something Joshua might like.... especially since he's shy and the pin trading may not be for him....

Pressed Pennies. We love them and you can find the machines everywhere. They are only 51 cents each!!! The pressed penny book is about 6.50 (I think). It is great fun and a relatively inexpensive collection. If you decide on this, I recommend getting all the quarters and shiny pennies together before you leave home.

[ndloewen]

I just thought of something Joshua might like.... especially since he's shy and the pin trading may not be for him....

Pressed Pennies. We love them and you can find the machines everywhere. They are only 51 cents each!!! The pressed penny book is about 6.50 (I think). It is great fun and a relatively inexpensive collection. If you decide on this, I recommend getting all the quarters and shiny pennies together before you leave home.

The pressed pennies would be fun to do. I will have to look into that. I checked out mousepinsonline. Great prices...until you add the shipping to Canada!! Then it's not such a great deal...

[mindymouse1]

The kids look so excited!!!! I can't wait to read all about it! Where is this list??? I am SO in need of a list!!!



Noah seems to be doing better today, so hopefully those antibiotics are finally kicking this pneumonia. Still struggling some with his breathing and our home care nurse brought us a nebulizer so we could do some ventolin masks at home.

We also found out that our home care nurse will be in Florida on vacation the same time as us!! She is hoping to help us out for a day, or even just give us some respite one evening while we are there. She is like family to us, so we are excited to spend a bit of time with her out there. Do you think her and her hubby would be able to come to GKTW for part of a day or an evening to help out?? I'm not sure how it works with visitors there.:confused3

The hospital gave the kids some extra chocolate advent calendars, so we are using them to start our official disney countdown! Wow, so much to do between now and then!!:scared: We started making packing lists yesterday for everyone. I need to search out Amber's amazing list and see what I'm all still missing.

[ndloewen]

mindymouse1, I still haven't found that packing list either. Can anyone help me locate it??:confused3

Pins and pennies...they can all get so pricey:( ...I just came across a neat idea for a FREE souvenier from AK...a Kid's Discovery Club Passport.

"The Passport can be obtained at any one of the stops around the park. Once you complete your first activity and obtain your passport, you can proceed to visit the other five stops and collect their respective stamps. Once you visit and complete all six stops, you receive a special Rafiki stamp (and usually stickers) acknowledging completion of the program."

Check it out here: http://www.stitchkingdom.com/discovery/ Sounds fun for the kids!

[dmbfan]

Ohhh I can't wait to see more of your Big Give pictures, what a blessing, of course seeing Noah smile totally makes my day...:)

Three more weeks....OMG are you totally freaking out...AHHHHH....:)

[macntosh]

If you are looking for a bag of pins to trade I would be happy to split the cost with you. I could purchase them have them shipped to me in the states and then give them to you at GKTW. Shipping would be less and I have a person on Ebay that I have ordered from in the past.

We LOVE pin trading!

Let me know what you think.

[lizet313]

:) Packing List check following websites

http://www.mousesavers.com/timeismoney.html

LOOK FOR THE FOLLOWING WORDS IN THE TEXT....

Disney World Vacation Ultimate Packing List

To download the list in Windows, right-click on the link and select "Save Target As."

To download the list on a Mac, hold down the Option key while clicking on the link.


__________________________________________________ ____________
http://www.disneyzone.net/packing.htm


http://travelwithkids.about.com/od/packinglists/Packing_List.htm


http://www.themouseforless.com/downloads/trip/UltimatePackingList.shtml

http://www.wdisneyw.co.uk/pack.html


I hope this helps...:goodvibes

[ndloewen]

We are in urgent need of prayers here again...

Yesterday Noah began getting progressively worse during the day and is now spiking high fevers...we are off to the ER this morning to be admitted. With less than 3 weeks to his wish trip, we are all very worried and discouraged...

Please check his blog for further updates.

[VroomVroomLightning]

I will continue to keep you and your family in my prayers. I wish the best for you all!

[lizet313]

Wishing that each day brings you and your family renewed strength, brighter times, and a healthier, happier NOAH. You and your family are in my thoughts everyday. It isn't always easy, but when you're not feeling well...hope it helps to know others are thinking of you... and hoping that you'll be better very soon. Take good care of you and your family. Keep us updated. Everything has to be ok.

[3princesses+aprince]

Awww, I just saw your post and have tears in my eyes. Little Noah was doing so good. I will keep watching his blog, and he is in my thoughts everyday. Really he is, I always wonder how he is doing.pixiedust:

[MAKHayes-DisneyDiva]

We are in urgent need of prayers here again...

Yesterday Noah began getting progressively worse during the day and is now spiking high fevers...we are off to the ER this morning to be admitted. With less than 3 weeks to his wish trip, we are all very worried and discouraged...

Please check his blog for further updates.

I'm saying prayers for your family and for Noah.

[dmbfan]

We are in urgent need of prayers here again...

Yesterday Noah began getting progressively worse during the day and is now spiking high fevers...we are off to the ER this morning to be admitted. With less than 3 weeks to his wish trip, we are all very worried and discouraged...

Please check his blog for further updates.

Oh no.....:guilty: I am sorry I am reading this. PLEASE know that Noah is in my thoughts and prayers and I hope the hospital stay is a short one, and more so that he does not have a line infection....when I hear spiking fevers that is the first thing that comes to mind, I know that all to well with Jake.

Praying hard...:grouphug:

[autumnpalm]

Praying for Noah.:grouphug:

[lizet313]

:grouphug: How is Noah doing?

[lizet313]

I went to Noah's journey::grouphug:

I am so happy to read he is doing better. Noah has proved that he is standing strong and it will take more than this to put bring him down. Stay positive and you will see success. We wish nothing but the best for you and your family.

[3princesses+aprince]

So glad to read on Noah's blog that he is doing a little better. I keep checking up on him wishing him wellpixiedust:

[tinytreasures]

prayers for Noah

[maroo]

Praying for you guys!!! :)

[ndloewen]

Thank you all for your prayers and kind words...

Noah is doing better today...still struggling with breathing issues, but we are slowly kicking this pneumonia and are hoping this hospital stay will be a short one. It's driving me crazy to be stuck here in hospital when there is still so much to be done and we have less than 18 days to go!! But I am very thankful that this happened now and not 2 weeks from now.

This is just Noah's little "tune-up" before we are off to the land of pixie dust and dreams come true. We are bound and determined to get him to Disney!!!

[macntosh]

Thank you all for your prayers and kind words...

Noah is doing better today...still struggling with breathing issues, but we are slowly kicking this pneumonia and are hoping this hospital stay will be a short one. It's driving me crazy to be stuck here in hospital when there is still so much to be done and we have less than 18 days to go!! But I am very thankful that this happened now and not 2 weeks from now.

This is just Noah's little "tune-up" before we are off to the land of pixie dust and dreams come true. We are bound and determined to get him to Disney!!!

So glad to hear things are getting better. Prayer is such a wonderful tool!:grouphug:

[maroo]

I could cry!! Awesome! You guys are going to have so much fun!!

[mytwotinks]

I just wanted to let you know that we are praying for Noah everyday. Kailyn should be getting a special package soon! I hope it fits. She looks a little less "sturdy" than my size 7/8 that I fit it too! I can't wait to start hearing about your magical trip.

[Sandy321]

adding my thoughts and prayers!!
(thanks to Maroo btw!)


pixiedust:

[ndloewen]

Those lungs aren't bouncing back quite as quickly as I'd like...my patience is being tested, sitting in here...anxiously wanting to be at home doing last minute planning and packing. After a quiet night, Noah's lungs didn't sound so great this morning...we think perhaps we have been letting him go too long between ventolin masks. He had come off the oxygen for a while yesterday, but he is back to needing it continuously again today. So this morning we started scheduled masks for the next 24 hrs in the hopes of getting his breathing and wheeziness better under control. Never fun having to wake him during the night for the masks, but hopefully the morning won't be quite so rough for him.

[oklamomof4boys]

Those darn lungs! We'll be praying that Noah has a better morning- and that you all are able to get some sleep!

Thanks for taking the time to update us all- I know they will be asking at church tomorrow!

Carol

[macntosh]

Those lungs aren't bouncing back quite as quickly as I'd like...my patience is being tested, sitting in here...anxiously wanting to be at home doing last minute planning and packing. After a quiet night, Noah's lungs didn't sound so great this morning...we think perhaps we have been letting him go too long between ventolin masks. He had come off the oxygen for a while yesterday, but he is back to needing it continuously again today. So this morning we started scheduled masks for the next 24 hrs in the hopes of getting his breathing and wheeziness better under control. Never fun having to wake him during the night for the masks, but hopefully the morning won't be quite so rough for him.

Do they not have one of those dome masks they could use while he is sleeping. We got one for Aidan after a surgery that rested on his chest and shot the mist straight at his nose and mouth. Not the perfect seal, but also allows him to rest. It's the only way we can get albuteral and pulmicort on him now is sleep and nap time. We still use that mask and rest it on his monkey if he's on the side. Just blow the mist in his face.

You might need a better seal though.

[deno2]

Just found this thread this morning, (I too have a Noah and the thread title caught my eye) and have tearfully followed the journey from the beginning to the most recent update. I added little Noah and his family to my prayer chain.

deno

[ndloewen]

A long day...weekends are always long here, and it's been a frustrating day dealing with the lack of communication from the team that is on call. Noah's oxygen requirements have been increasing overnight and today, instead of the decreasing I wanted to see. He has gone from needing 1Litre yesterday to 3Litres today and we are having to do even more frequent masks. His chest xray this morning did look improved from Wednesday, so it seems that we are kicking the pneumonia. But it is the asthma/reactive airway stuff that is the main issue now. We started a course of IV prednisone (steroids) today, so hopefully that will help open up those lungs. Despite this all, Noah is in pretty good spirits and we are both starting to go a bit stir crazy in here.

I've read my Unofficial Guide from cover to cover...made about 10 different packing lists...finished all my medical letters and updated Noah's medical history to take along with us...wanting to call the airlines to try and change our flight, but I just want to be home first and know for sure that this trip will happen!!

Macntosh...I haven't heard of the dome mask, but I will ask respiratory about it next time I see them here as we all need some sleep around here!

[maroo]

Aw man!! We are still praying for you guys here!!!!!!

I am sorry you are getting stir crazy! Weekends are crummy at the hospital. No one seems to be around? Like, what is this place, a hospital?

Thanks so much for your updates. I am glad that your trip is distracting you some...

We love you guys!!! :)

[llurgy]

Praying that Noah kicks the rest of his Pneumonia and does away with all that wheezy stuff.
You have to get him on his Wish Trip, you all need it.

Prayers sent across the miles

Mandy

[3princesses+aprince]

Glad to hear that it looks like the pnumonia is clearing. I hope that when I read your next post his lungs will be better as well. Still praying for you, little Noah and family :goodvibes

[ndloewen]

Still in hospital...still no discharge plan...2 weeks to go...

We've been able to come down to 2 litres on Noah's oxygen, but seem to be stuck there. We are waiting to see respirology to re-evaluate what is going on and what our plan should be. Still hoping that we can wean Noah off the oxygen soon, but that may not happen as soon as we'd like. So talk today is of the plans that need to be put into place in the next two weeks for our trip to happen...he may need continous oxygen while we are there. I'm really disappointed about that as it will just make things more complicated.

Our other issue is that I also thought that we had things organized with the airline and our oxygen use, however the airline (Air Canada) is trying to make things more complicated. They are now saying that we can only use their high cost oxygen and are not allowed to run the portable oxygen concentrator that we already rented, even though their website clearly says that it is approved!! So between the airline, our home oxygen provider, respirology and the wish foundation, I am getting nervous about the last minute details that need to be ironed out between them all.

Seems all a bit overwhelming today and wishing it could just be easier. I think I'm just really tired today...tired of it all. Praying that we will be able to wean him before our trip, and that the travel issues will get sorted out. Praying we will just get there and be out of here!! Praying that tomorrow is a better day.

[autumnpalm]

Oh, you are getting so close. I pray for little Noah and the rest of you every single night.:hug:

That sucks that Air Canada is making things so difficult.:sad2: Definitely makes me think twice about flying with them in the future. For them to make you jump through hoops like that is just wrong- you have so many other more important things to concentrate on.

I hope Noah can get weaned off his oxygen!:grouphug:

[maroo]

Aw...:grouphug: You must be totally stressed!

Ok...Airplane oxygen is added to my list for sweet Noah!

Those folks at Air Canada need to get on the bandwagon! Because we are going to get this sweet family to Disney !!! :)

Hello, Air Canada - Come on, dudes!!

We continue to pray for you guys!

Thank you so much for the update!!!!!! :)

[3princesses+aprince]

Thank you for the update, always wondering how the little guy is doing. I'm so sorry that you have to sit there hoping everything will be in place for your trip. I wish we were all closer to you and could help you get everything packed and work out all of the kinks.;)

Goodnight

[twob4him]

A long day...weekends are always long here, and it's been a frustrating day dealing with the lack of communication from the team that is on call. Noah's oxygen requirements have been increasing overnight and today, instead of the decreasing I wanted to see. He has gone from needing 1Litre yesterday to 3Litres today and we are having to do even more frequent masks. His chest xray this morning did look improved from Wednesday, so it seems that we are kicking the pneumonia. But it is the asthma/reactive airway stuff that is the main issue now. We started a course of IV prednisone (steroids) today, so hopefully that will help open up those lungs. Despite this all, Noah is in pretty good spirits and we are both starting to go a bit stir crazy in here.

I've read my Unofficial Guide from cover to cover...made about 10 different packing lists...finished all my medical letters and updated Noah's medical history to take along with us...wanting to call the airlines to try and change our flight, but I just want to be home first and know for sure that this trip will happen!!

Macntosh...I haven't heard of the dome mask, but I will ask respiratory about it next time I see them here as we all need some sleep around here!


I know this won't help the recovery from the pneumonia but has Noah ever tried Advair? Its the purple circular diskus. I struggle with restrictive airways and have been on all kinds of different meds for it. But nothing and I mean nothing helped me the way Advair did. Just a thought...but it may be worth a try. :goodvibes :goodvibes

Still in hospital...still no discharge plan...2 weeks to go...

We've been able to come down to 2 litres on Noah's oxygen, but seem to be stuck there. We are waiting to see respirology to re-evaluate what is going on and what our plan should be. Still hoping that we can wean Noah off the oxygen soon, but that may not happen as soon as we'd like. So talk today is of the plans that need to be put into place in the next two weeks for our trip to happen...he may need continous oxygen while we are there. I'm really disappointed about that as it will just make things more complicated.

Our other issue is that I also thought that we had things organized with the airline and our oxygen use, however the airline (Air Canada) is trying to make things more complicated. They are now saying that we can only use their high cost oxygen and are not allowed to run the portable oxygen concentrator that we already rented, even though their website clearly says that it is approved!! So between the airline, our home oxygen provider, respirology and the wish foundation, I am getting nervous about the last minute details that need to be ironed out between them all.

Seems all a bit overwhelming today and wishing it could just be easier. I think I'm just really tired today...tired of it all. Praying that we will be able to wean him before our trip, and that the travel issues will get sorted out. Praying we will just get there and be out of here!! Praying that tomorrow is a better day.

Many prayers for you and Noah! :angel: I hope the airline gets themselves together enough to realize they are telling you two different things. Yeesh! I hate that!

[msce2]

Praying daily for Noah and your family.

[kimmylaj]

just popping in to say i'm thinking of you:)

[ndloewen]

Finally...we have a plan!!

A frustrating day yesterday, as it seemed we were not getting any closer to discharge planning...but finally we have a plan for home tomorrow!! Noah has done a fabulous job of weaning off the oxygen, so no daytime oxygen!! The respirologist was shocked when she came to see us and saw that he had weaned from 2 Litres to room air in one day. So thank you for all your prayers...those lungs are healing, and we don't have to worry about continuous oxygen for our trip. He will still need it for the plane and for night. Tonight we will do an overnight oximetry study to reassess his oxygen needs for sleeping. Our home prescription has been left pretty wide open for us though which is good...we will be taking a sat monitor home, and depending on his sats, we can use his oxygen for night and as needed during the day.

We will finish out Noah's 7 day course of Prednisone at home, and his IV antibiotics, which will finish the day we are scheduled to leave for Noah's wish trip. We will then start him on a prophylactic antibiotics three times a week. His lungs still don't sounds great, and our pediatrician was hesitant about discharge, but they are no longer doing anything for Noah here that we can't do at home.

Brad brought the kids to the hospital yesterday and we opened 2 big give packages we had received in the mail. What a bright spot that was for us and so much fun!! Thank you, so much Carol and I couldn't find who the other one was from (it contained an adorable pooh bear outfit for Noah plus other goodies)...I hope you identify yourself so I can thank you too!! I wish I could explain what these packages meant to us...they were pure gold for us yesterday and could not have come at a better time. I will post pictures once I am home for you all to see. We also got our welcome letter from GKTW. The kids were squealing so much that we had all the staff coming in here to see what was going on. Everyone was so touched and amazed by your generosity!!

Slowly things are falling into place, and we are feeling much more optimistic about this trip actually happening. Still airline issues to work out, but I will wait until we are home to tackle that project. I am exhausted today...I have not stepped out of this hospital at all in the past 9 days...Noah is bored silly and still isolated in his room...we both can't wait to be home.

[autumnpalm]

Oh, I am so so happy that Noah is off oxygen during the day. What great news!

I hope your time at home goes smoothly and you don't have any more scares before your big trip. I will be praying for you every single night.:hug:

[macntosh]

Wonderful news I look forward to celebrating with y'all in just a few days. Can you believe it? Just a few days! I'm getting nervous.

[maroo]

Yea!! :)

I posted on your blog, but thought I could come over here and celebrate too!

:banana: :banana: :banana:

Plus I get to use all of these fun smileys!

I am getting excited for you guys again about your trip. Sounds like it is going to work out GREAT! Just finishing those antibiotics as you are jetting off! And no continuous daily O2...sounds awesome!

:yay: :yay: :yay:

[3princesses+aprince]

Oh that is such great news. I am so HAPPY for you guys. I will keep praying that Noah stays nice and healthy for a wonderful wishtrip! You must have so much to do to get ready. Don't be overwhelmed though, have fun with all of the packing and getting ready.
I hope everything works out well with the airline too!
:dance3: So happy for you today!

[MAKHayes-DisneyDiva]

I am praying that Noah stays healthy and the trip is a wonderful experience for all of you!

[VroomVroomLightning]

YAY!! I just checked Noah's blog and they were able to come home yesterday!! So happy for you guys and I cannot wait to hear about the rest of your planning!! You and your family deserve this more than any family I know. Such a strong family and so deserving :cool1: :cool1:

[oklamomof4boys]

I am so glad you are home! Maybe now you can get some sleep and get all the details finalized for your trip!

I am so glad you got the package- I don't know how to sew, but I do love to shop!

Continued prayers for all of you- I can't wait to go to church tomorrow and tell everyone Noah is out of the hospital! Everyone has been asking!

Carol

[ndloewen]

Yes, we are home!! :banana: :banana: :banana: :banana: :banana:
Exhausted...overwhelmed...but happy to be home! Thank you all for your kinds words and prayers these past 10 days. Noah is still struggling a bit with those lungs, but we are carrying on in faith that things will continue to improve and we will be off to Disney in less than 10 days!!!

Another blessing yesterday...after talking with me in hospital about our crazy 5am flight, one of the child life staff asked for our wish coordinator's phone number. She comes back and tells me that she just called and asked for a night at the Sheraton hotel, which is connected to the airport to make our travel day a bit easier. Later that day, we got a call saying that the request was approved and we now have a night on the 23rd!:cheer2: :cheer2: So we literally get to sleep at the airport and eliminate the 45 minute drive to the airport at 2:30am!! So our new plan is that once Brad is home from work on the 23rd, we will head for the hotel, check in, order pizza and get some sleep!!

We have decided to cancel our weekend at Thief River Falls (for next weekend)...it is just too much. We have neither the time, energy or money for it. So no going away party for Noah...we are just planning to keep him home, away from as many people as we can until we leave. if I could put him in a bubble I would!! The hotel at Thief River can also be quite smoky (it's a casino and smoking is permitted)...not a good place for Noah's lungs! A disappointment for the other kids, but I think Disney will make up for it!!

So much to post...so much to do...I will try to upload big give pictures later once I tackle this disaster of a house. How does it get to look so bad when I am away??:laundy: I am working a 12hr shift tomorrow, so I'm really feeling the time crunch here!! :scared1:

[macntosh]

Yes, we are home!! :banana: :banana: :banana: :banana: :banana:
Exhausted...overwhelmed...but happy to be home! Thank you all for your kinds words and prayers these past 10 days. Noah is still struggling a bit with those lungs, but we are carrying on in faith that things will continue to improve and we will be off to Disney in less than 10 days!!!

Another blessing yesterday...after talking with me in hospital about our crazy 5am flight, one of the child life staff asked for our wish coordinator's phone number. She comes back and tells me that she just called and asked for a night at the Sheraton hotel, which is connected to the airport to make our travel day a bit easier. Later that day, we got a call saying that the request was approved and we now have a night on the 23rd!:cheer2: :cheer2: So we literally get to sleep at the airport and eliminate the 45 minute drive to the airport at 2:30am!! So our new plan is that once Brad is home from work on the 23rd, we will head for the hotel, check in, order pizza and get some sleep!!

We have decided to cancel our weekend at Thief River Falls (for next weekend)...it is just too much. We have neither the time, energy or money for it. So no going away party for Noah...we are just planning to keep him home, away from as many people as we can until we leave. if I could put him in a bubble I would!! The hotel at Thief River can also be quite smoky (it's a casino and smoking is permitted)...not a good place for Noah's lungs! A disappointment for the other kids, but I think Disney will make up for it!!

So much to post...so much to do...I will try to upload big give pictures later once I tackle this disaster of a house. How does it get to look so bad when I am away??:laundy: I am working a 12hr shift tomorrow, so I'm really feeling the time crunch here!! :scared1:

I think when they see Cinderella's Castle, Thief River will be a distant memory. I sent you a pm about the other item and am checking shipping windows. I think we can make it work!

[autumnpalm]

Oh I am so happy to hear that Noah is home!!!:goodvibes What wonderful news.

Continued prayers for your whole family!

I really hope you write a TR... I can't wait to hear about how your trip went!:yay:

[maroo]

Oh I am so happy to hear that Noah is home!!!:goodvibes What wonderful news.

Continued prayers for your whole family!

I really hope you write a TR... I can't wait to hear about how your trip went!:yay:

Amen to the "I hope you write a TR!"

I have no doubt that Nicole will write one!! :) Most of these guys that have blogs and blog all of the time have GREAT TR's!




I am so glad that you guys decided to cancel the trip over the weekend. Sounds like a very wise decision! And I agree...that Castle will make up for ALL of that!!!


I hope you are feeling better...now that you guys are home! :) I am getting so excited for your trip!! :)

[kimmylaj]

i am so glad to hear that noah is home. i truly feel like i know you guys and i think about you quite often. my mom and my husband both ask about noah all the time. i am so glad to be reporting that he is home hooray. its almost time for the single digit dance . woohoo:cool1:

[tinytreasures]

I am so glad you are home
wonderful news about sleeping at the airport :cool1:

[dmbfan]

So happy that Noah is home...praying everything is smooth from here on out until the big day...:)

[ndloewen]

i am so glad to hear that noah is home. i truly feel like i know you guys and i think about you quite often. my mom and my husband both ask about noah all the time. i am so glad to be reporting that he is home hooray. its almost time for the single digit dance . woohoo:cool1:

IT'S TIME!!!!!!!!!!!!!!!
SINGLE DIGIT DANCE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

:banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana: :banana:


Ok, I promise my next post will contain big give pictures!!

[VroomVroomLightning]

YAY for single digit dance!! So excited for you guys!!! Woohoo!!

:cool1: :banana: :cool1: :banana: :cool1: :banana: :cool1: :banana: :cool1: :banana: :cool1: :banana: :cool1: :banana: :cool1: :banana: :cool1: :banana:

[maroo]

Sister!! I am dancing with you!!!!

I can't even tell you how excited I am to see you guys heading to the World! Answered prayers all over the place!

And I am STILL PRAYING for you guys!!! :) Won't stop till you are home safe and sound. And won't stop then, really! Persistent prayers from Maroo!


:banana: :banana: :banana:


:yay: :yay: :yay: :dance3: :woohoo: :cheer2: :woohoo: :dance3: :yay: :woohoo: :cheer2: :dance3: :yay: :woohoo:

[ndloewen]

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 (visitingapril09)...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2942.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2943.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2944.jpg

Inside were games, wall stickers for the kids rooms, a book for Noah and beautiful water bottle holders for Kailyn & Joshua...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2946.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2947.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2958.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2959.jpg

And, the most adorable outfit for Noah!!! I waited until home to put it on him and take pictures. It fits him perfectly...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2963.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2964.jpg

And my favorite part...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2965.jpg

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 were it at Disney!!

The second package to come...

[ndloewen]

Our second big give package in hospital...Joshua was so excited he could barely look in the box...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2948.jpg

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...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2949.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2953.jpg

Noah was thrilled with his new Tigger and gives him constant hugs!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2952.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2955.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2957.jpg

Joshua was so excited with his batman pj's and the removable cape!! And Wall-E was the biggest hit!! He absolutely loves it and has been trying to figure out how to fit him in his carry-on. I'm sure he will find a way!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2956.jpg

Kailyn also loves her princess pj's and her Minnie Mouse that she has been wanting so much!!

I will have to try and get a better picture of Noah in his cute Mickey Mouse pj's and Joshua's cape we are at GKTW. Kailyn & Joshua refused to take off their new pj's and wore them home from the hospital!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2955.jpg

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!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2961.jpg

Carol and family, thank you so, so much for your generosity!! It was so much fun to see the kids excitement. You brightened up our hospital stay and once again, we are completely overwhelmed!

[3princesses+aprince]

That is so great that Noah is home. The big give gifts are great! WOW 8 days to go!!!!

I think it was wise of you also to cancel the trip before you leave. Keep him away from all germs!

[ndloewen]

We had 2 packages arrive yesterday!!

The first package was from Linnette...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2970.jpg

First there were tattoos, a coloring book and the most adorable Donald Duck outfit for Noah...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2971.jpg

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:rotfl2: ...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2974.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2979.jpg

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

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2978.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2984.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2985.jpg

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...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2990.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2991.jpg

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

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2983.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2975.jpg

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!!! All you big givers are SO talented!!

The second package is from Denise...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2986.jpg

"Oh, I have a good feeling about this one!!" she says as she sees the material.

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2988.jpg

Yep, she LOVES it!! And so do I!!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2989.jpg

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!! popcorn:: popcorn:: popcorn::

[autumnpalm]

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2964.jpg

This picture just melted my heart. What a gorgeous little boy.:love:

[iu97alum]

HOW ADORABLE!!! I can't belive that you're into SINGLE DIGITS!!!! The kiddos look soooo Happy and they're not yet at the world! I can only imagine wha ttheir faces will be once you actually GET there!!!!!!

[macntosh]

Well I know how to find y'all at GKTW, just look for two of the best dressed kids in the place. Wow what amazing Big Give designers there are!

[HeatherSue]

I'm so happy to see pictures of Noah at home!! He looks absolutely adorable in his new outfits. I just love them!! All of the kids look so cute!

[macntosh]

Check your pm's, I need some info quick from you. ;)

[twob4him]

How great is it to see Noah at home! The outfits and goodies are so wonderful....I just love seeing how excited they all are over them. Many prayers and well wished for your trip!!! :goodvibes

[3princesses+aprince]

Aww, They all look so nice in their new outfits. I bet they cannot wait to be in Disney world! Everyday I check in and am so Happy to see that Noah is doing good:goodvibes

[ndloewen]

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!!:cheer2: :cheer2: :cheer2: :cheer2: :cheer2: :cheer2: :cheer2: 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!!!!!!!!!!!!!!!! :woohoo:

5 more days until we leave home!!!!!!!!!!!:eek:

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!!

[tinytreasures]

Noah is so cute
the big give kids are going to be so cute together :lovestruc

[jennipooh]

I must say your kids are so cute in their new outfits!

I pray that your Noah has continued health as you prepare for this wonderful trip on Tuesday. We will be thinking of you then (on my Noah's 10th birthday!)

Anyway, my Noah had only the second round of antibiotics of his entire life right before we left for Disney World back in December. (he picked up strep throat, and to think I was whining about it - sometimes we forget how blessed we are with our healthy children!) It ended up being no problem at all to get his refrigerated medicine down there. I used a small, lunch box sized, collapsible cooler (which I picked up at the local CVS a few summers ago for next to nothing) and 2 Finding Nemo freezer packs (which I picked up in the dollar aisle at Target). I think the cooler bags you are looking for are what I call a collapsible cooler - basically just a soft sided cooler.

I would begin the search at someplace like Wal-Mart as they get their summer stuff out so early!! Anyway it worked great - no problem with security and no problem with medicine getting warm. The only bummer is that we left the cute Nemo ice packs in the freezer when we checked out! He had finished up his medicine and we just weren't thinking of them. They were so cute. :sad2:

Have fun :woohoo:

[ndloewen]

I must say your kids are so cute in their new outfits!

I pray that your Noah has continued health as you prepare for this wonderful trip on Tuesday. We will be thinking of you then (on my Noah's 10th birthday!)

Anyway, my Noah had only the second round of antibiotics of his entire life right before we left for Disney World back in December. (he picked up strep throat, and to think I was whining about it - sometimes we forget how blessed we are with our healthy children!) It ended up being no problem at all to get his refrigerated medicine down there. I used a small, lunch box sized, collapsible cooler (which I picked up at the local CVS a few summers ago for next to nothing) and 2 Finding Nemo freezer packs (which I picked up in the dollar aisle at Target). I think the cooler bags you are looking for are what I call a collapsible cooler - basically just a soft sided cooler.

I would begin the search at someplace like Wal-Mart as they get their summer stuff out so early!! Anyway it worked great - no problem with security and no problem with medicine getting warm. The only bummer is that we left the cute Nemo ice packs in the freezer when we checked out! He had finished up his medicine and we just weren't thinking of them. They were so cute. :sad2:

Have fun :woohoo:

I did check out Walmart, but no luck:confused3 I've been told to try Canadian Tire. That will be my mission this Saturday! I need something fairly large, as we have 16 Litres of fluid to keep cold as well as some meds.

[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!!:cheer2: :cheer2: :cheer2: :cheer2: :cheer2: :cheer2: :cheer2: 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!!!!!!!!!!!!!!!! :woohoo:

5 more days until we leave home!!!!!!!!!!!:eek:

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! :banana: :banana: :banana:

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!! :woohoo: :dance3: :cheer2:

[QueenMomof2]

I'm so happy to hear that Noah is doing well and all set to go. :yay: 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...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2992.jpg

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

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2994.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2995.jpg

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

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2967.jpg

[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:goodvibes

[ndloewen]

Another package arrived on Thursday from Anna...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3001.jpg

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

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3006.jpg

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3007.jpg

A very cute Tigger outfit for Noah...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3004.jpg

It's a perfect fit!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3008.jpg

And thanks for the drawing, Lucas!!

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3003.jpg

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!!!!!!!!:dance3: :dance3:

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

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]

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_2989.jpg

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!! popcorn:: popcorn:: popcorn::

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!!!!!

party: party: party: party:

[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.

[ndloewen]

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.

Thanks. I never thought to try Costco. I did find some thermal bags at Superstore. I bought 4 bags and I can fit 4 TPN bags with ice packs in each one. Then all the thermal bags are going into a suitcase that we can roll and carry on the flight. I think it should work pretty well.

Ok, big give pictures coming up in the next post!:)

[twob4him]

Oh goody! :goodvibes

[Tracie]

Yippee! Cute kid pics!

Tracie

[ndloewen]

We had another package arrive on Friday from Tracie, but it had to wait until today to be opened...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3011.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3012.jpg


Personalized matching t-shirts for the whole family!!!:cool1:

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3015.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3014.jpg

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

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3018.jpg

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. :dance3:

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3019.jpg

[Tracie]

We had another package arrive on Friday from Tracie, but it had to wait until today to be opened...

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3011.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3012.jpg


Personalized matching t-shirts for the whole family!!!:cool1:

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3015.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3014.jpg

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

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3018.jpg

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. :dance3:

http://i413.photobucket.com/albums/pp220/ndloewen/IMG_3019.jpg

So glad they got there in time! The kids are so cute, they were fun "to make" and it was easy since you posted so mny great pics of your family.

I hope you all have a trip filled with MAGIC you all deserve it!

Tracie

[3princesses+aprince]

Aww, the shirts are awesome!!! I came to say I hope you have a wonderful trip. I know you're just waiting for the kids to get home from school to head to the hotel. Take a picture of their excitement when you tell them you guys are leaving today!
I hope all goes well. Stay safe and healthy!!!!!

[twob4him]

OH wow those tees are just awesome!!! :cool1: :thumbsup2

[ndloewen]

We are leaving for the hotel TODAY!!!!!!!

party: party: party:

I just can't believe this time is actually upon us and that it has all come together. When I think back to the place we were less than 2 months ago, this is truly a miracle...


http://i413.photobucket.com/albums/pp220/ndloewen/IMG_0905.jpg
http://i413.photobucket.com/albums/pp220/ndloewen/IMG_0907.jpg


We are so blessed. Huge, huge thank yous to all you Big Giver's out there. We have been completely spoiled and we haven't even left yet! Words cannot express how you have blessed our family.:grouphug:

[iu97alum]

Have a MAGICAL TRIP!! Can't wait to hear about it when you get home!! Enjoy, try to relax and take LOTS of pictures for us!! :)

[lizet313]

The T-shirts look great. Have a wonderful and migical:wizard: time.