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!!
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!!
In order of preference:
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. 
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...
