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Old 12-11-2008, 04:04 PM   #1
ndloewen
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Noah's Wish Trip (Wings ~ July 29, 2009)

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!!

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!!
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Mom to Kailyn (13) , Joshua (11) , and Noah (forever 3)

Noah's Journey

Noah's Wish Trip Feb 24 - March 10

Last edited by ndloewen; 08-15-2009 at 11:10 AM.
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Old 12-11-2008, 07:28 PM   #2
zeppy68
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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.
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Old 12-11-2008, 08:43 PM   #3
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cant wait to hear more. what a strong , brave boy you have
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Old 12-11-2008, 10:22 PM   #4
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wow he is a miracle
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Old 12-11-2008, 11:15 PM   #5
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woo hoo!! subscribing! Can't wait to hear all about your trip!

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Old 12-12-2008, 03:23 PM   #6
llurgy
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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
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Becca's MAW/GKTW/Disney Trip was January 21st to January 27th 2009
Me ...... David ...... Becca
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Old 12-13-2008, 01:28 PM   #7
ndloewen
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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...


PICU during our most frightening days...



Our most recent hospital pictures...


Noah at his best this summer...


More pictures of the whole family to come...
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Mom to Kailyn (13) , Joshua (11) , and Noah (forever 3)

Noah's Journey

Noah's Wish Trip Feb 24 - March 10
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Old 12-13-2008, 03:37 PM   #8
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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.
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Old 12-13-2008, 07:56 PM   #9
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What a cutie! Can't wait to read more!
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Old 12-15-2008, 10:38 AM   #10
ndloewen
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I have officially requested our dates now that we have all the passports, (thanks to maroo's help with crowd calendars). 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!!
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Mom to Kailyn (13) , Joshua (11) , and Noah (forever 3)

Noah's Journey

Noah's Wish Trip Feb 24 - March 10
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Old 12-15-2008, 11:14 AM   #11
mom2lilnick
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Awwww.. Noah is so cute!
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Wife to one amazing guy Jeff
Mom to three wonderful kids..
Kayla, Noah and my wish child Nicholas .

Nick's pre-trip report - http://www.disboards.com/showthread....8#post28150528
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Old 12-15-2008, 11:48 AM   #12
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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
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Old 12-15-2008, 11:56 AM   #13
ndloewen
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Quote:
Originally Posted by OneBlessedFamily View Post
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!
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Mom to Kailyn (13) , Joshua (11) , and Noah (forever 3)

Noah's Journey

Noah's Wish Trip Feb 24 - March 10
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Old 12-15-2008, 04:51 PM   #14
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I am for sure subscribing to this! I cannot wait to hear more! You have a beautiful son!
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Old 12-16-2008, 11:39 AM   #15
ndloewen
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The Rest of Us...

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



My hubby and I have been married for 10 years now. 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!!



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!!



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!!



And that leaves my baby...what more to say about Noah? 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!
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Mom to Kailyn (13) , Joshua (11) , and Noah (forever 3)

Noah's Journey

Noah's Wish Trip Feb 24 - March 10
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