Andys_wish
Earning My Ears
- Joined
- Feb 12, 2011
- Messages
- 15
Hi Everyone,
Im Jennifer and my sons wish trip to WDW will be May 6 - 13th, yes tomorrow! and well be staying at GKTW. Were all so excited.
Introduction:
Myself 36, Husband Jeff 43, and our kids: son Zachary 17, step son Cameron 17, daughter Ally 9 and son Andy 5. Andy is our wish kid.
My husband and I met in South Carolina where he was stationed at the time, he since retired in 2007 and we now live in Kentucky. We both had sons from previous marriages who were 8 years old at the time we met and I feel very fortunate that they have always got along together really well despite being very different people. Camerons a socialite, extravert, very popular in school, hip hop music lover and Zaks an introvert (like me), truck driving, wrangler wearing country kid. This is Camerons Junior year and Zaks senior. Zak has joined the Marine Corps Delayed Entry Program, he graduates high school June 3rd, ships off to boot camp June 20th. Im proud of him and terrified at the same time, I guess its all part of letting them go.
Cameron has Cystic Fibrosis (CF), its a genetic lung disease. It requires lots of medications, breathing treatments, chest therapy and hospital stays that are known in the CF world as tune ups. Recently Camerons hospital visits are becoming more frequent as this horrible disease takes its toll on his lungs. His pulmonary function test (pft) prior to his last hospitalization showed 35% lung function, which was very scary, but Im happy to report that after a two week tune up it increased to 80%, hallelujah!
Because of the family history of CF when I became pregnant with Ally I was tested to see if I was a carrier and wouldnt you know it, I was
Thankfully Ally only received one copy of the defected gene and since it takes two copies (one from each parent) Ally is only a carrier of the disease like Jeff and I. Knowing we both carried the gene we decided not to have anymore children. But I took a small break off bc pills planning to switch methods and became pregnant with Andy. Like my previous pregnancy I had an amnio done around 4 months and waited and worried, this same test that took two weeks with Ally took an agonizing 6 weeks with Andy and when the results came back it wasnt good news, Andy had received both defective genes meaning he did have CF. I was devastated, at the time I received the news I was training my replacement at work and she must of thought I was really depressed about leaving my job because I was balling crying. Jeff had previously received orders to go to Camp Lejeune, NC. I was a deputy sheriff and planned to go back to work in NC after Andy was born. We were optimistic that like Ally, Andy would not get both genes and life would go on as usual. We both took the news hard but we adjusted and we were anxiously awaiting his arrival. After receiving the news that Andy would have CF Jeff was able to stop his orders to NC and I was able to continue working and seeing a specialist in Perinatology. Everything was going well until during an ultrasound the Perinatologist noticed Andys bowel was dilated. A common problem in children born with CF is Meconium Ileus, or a blockage in the bowel preventing the baby from having a bowel movement and commonly resulting in surgery immediately following birth. Since this condition was suspected in Andy the Perinatologist recommended delivery in a hospital equipped with pediatric surgery available, which the naval hospital and local community hospital were not equipped with. Unfortunately, the request was denied for reasons that no matter how I put them will never make since to any normal reasonable person. I was instructed his delivery would be normal and that if he needed surgery he would be sent to the nearest childrens hospital by helicopter 2 hours away. Another issue with Andy was size, he was going to be a big baby, he measured large during every ultrasound but nobody seemed to be concerned even though my daughter had shoulder dystocia at birth which was a big scare. She weighed 9 lbs and 10 ozs and I knew Andy would be just as big if not bigger.
The night before my scheduled induction I noticed I wasnt feeling much movement and as it turns out that bowel obstruction had ruptured causing Andy distress, his hearth rate was 200 bpm when I got to the hospital and after waiting four hours for the ambulance because the weather was to bad for a helicopter, Andy was born via c-section, blue and not breathing. He was resuscitated and sent off to the childrens hospital 2 hours away. He weighed 11 lbs and 2 ozs. His MRI revealed significant brain damage due to loss of oxygen, 80% of his brain cortex was gone according to the neurologist, he was a very kind man who told me if it was his child he would turn off the breathing machines, without them he believed Andy could not breathe on his own, he suspected damage to the brain stem as well. Only those of you who have children who have been through such horrors can imagine the pain our families felt. Our parents came from Florida and Kentucky, we stayed in the grievance room and held him all night and by morning he had begun to cry, it was the first time I had heard him cry because of the tubes and I was determined to take him home.
Andy is now 5 years old and although he does have two very serious diseases, CF and CP, hes proven to be so strong to endure them. He doesnt have a great quality of life but hes happy, loved and taken care of very well. He smiles and laughs and it makes it all worth it. Hes taught me so much about life and although its very difficult at times to deal with two children that have chronic diseases we manage very well.
We are so thankful for the Make-A-Wish foundation giving us this opportunity to go on a vacation together as a family, we could never do this without them and Im thankful to all of you on this forum who share your stories, I love hearing about the trips and knowing what to expect. But I have to admit I am very worried because this all came about very quickly and I havent had any time to spend planning and now its down to the wire. I have to plan on creating an itinerary that will fit not only a disabled child but two 17 year olds and my 9 year old, pretty broad spectrum. Fortunately, the teens do help a lot with Andy and we will hopefully be able to spend one full day with just Jeff, me and Ally at Magic Kingdom, she only requests to go to the cinderella castle.
I have a question about the complimentary tickets. In the Itinerary we received from MAW it states, Complimentary tickets are available at Guest Services, can you request these tickets on more than one occasion or it is something you can only do once? Can you for instance ask for tickets to water park and on another day ask for tickets to Pioneer Museum? Im a little confused about that.
I have many more question but can't think of one at the moment...
I just hope it goes smoothly and everyone has a great time
Im Jennifer and my sons wish trip to WDW will be May 6 - 13th, yes tomorrow! and well be staying at GKTW. Were all so excited.
Introduction:
Myself 36, Husband Jeff 43, and our kids: son Zachary 17, step son Cameron 17, daughter Ally 9 and son Andy 5. Andy is our wish kid.
My husband and I met in South Carolina where he was stationed at the time, he since retired in 2007 and we now live in Kentucky. We both had sons from previous marriages who were 8 years old at the time we met and I feel very fortunate that they have always got along together really well despite being very different people. Camerons a socialite, extravert, very popular in school, hip hop music lover and Zaks an introvert (like me), truck driving, wrangler wearing country kid. This is Camerons Junior year and Zaks senior. Zak has joined the Marine Corps Delayed Entry Program, he graduates high school June 3rd, ships off to boot camp June 20th. Im proud of him and terrified at the same time, I guess its all part of letting them go.
Cameron has Cystic Fibrosis (CF), its a genetic lung disease. It requires lots of medications, breathing treatments, chest therapy and hospital stays that are known in the CF world as tune ups. Recently Camerons hospital visits are becoming more frequent as this horrible disease takes its toll on his lungs. His pulmonary function test (pft) prior to his last hospitalization showed 35% lung function, which was very scary, but Im happy to report that after a two week tune up it increased to 80%, hallelujah!
Because of the family history of CF when I became pregnant with Ally I was tested to see if I was a carrier and wouldnt you know it, I was
Thankfully Ally only received one copy of the defected gene and since it takes two copies (one from each parent) Ally is only a carrier of the disease like Jeff and I. Knowing we both carried the gene we decided not to have anymore children. But I took a small break off bc pills planning to switch methods and became pregnant with Andy. Like my previous pregnancy I had an amnio done around 4 months and waited and worried, this same test that took two weeks with Ally took an agonizing 6 weeks with Andy and when the results came back it wasnt good news, Andy had received both defective genes meaning he did have CF. I was devastated, at the time I received the news I was training my replacement at work and she must of thought I was really depressed about leaving my job because I was balling crying. Jeff had previously received orders to go to Camp Lejeune, NC. I was a deputy sheriff and planned to go back to work in NC after Andy was born. We were optimistic that like Ally, Andy would not get both genes and life would go on as usual. We both took the news hard but we adjusted and we were anxiously awaiting his arrival. After receiving the news that Andy would have CF Jeff was able to stop his orders to NC and I was able to continue working and seeing a specialist in Perinatology. Everything was going well until during an ultrasound the Perinatologist noticed Andys bowel was dilated. A common problem in children born with CF is Meconium Ileus, or a blockage in the bowel preventing the baby from having a bowel movement and commonly resulting in surgery immediately following birth. Since this condition was suspected in Andy the Perinatologist recommended delivery in a hospital equipped with pediatric surgery available, which the naval hospital and local community hospital were not equipped with. Unfortunately, the request was denied for reasons that no matter how I put them will never make since to any normal reasonable person. I was instructed his delivery would be normal and that if he needed surgery he would be sent to the nearest childrens hospital by helicopter 2 hours away. Another issue with Andy was size, he was going to be a big baby, he measured large during every ultrasound but nobody seemed to be concerned even though my daughter had shoulder dystocia at birth which was a big scare. She weighed 9 lbs and 10 ozs and I knew Andy would be just as big if not bigger. The night before my scheduled induction I noticed I wasnt feeling much movement and as it turns out that bowel obstruction had ruptured causing Andy distress, his hearth rate was 200 bpm when I got to the hospital and after waiting four hours for the ambulance because the weather was to bad for a helicopter, Andy was born via c-section, blue and not breathing. He was resuscitated and sent off to the childrens hospital 2 hours away. He weighed 11 lbs and 2 ozs. His MRI revealed significant brain damage due to loss of oxygen, 80% of his brain cortex was gone according to the neurologist, he was a very kind man who told me if it was his child he would turn off the breathing machines, without them he believed Andy could not breathe on his own, he suspected damage to the brain stem as well. Only those of you who have children who have been through such horrors can imagine the pain our families felt. Our parents came from Florida and Kentucky, we stayed in the grievance room and held him all night and by morning he had begun to cry, it was the first time I had heard him cry because of the tubes and I was determined to take him home.
Andy is now 5 years old and although he does have two very serious diseases, CF and CP, hes proven to be so strong to endure them. He doesnt have a great quality of life but hes happy, loved and taken care of very well. He smiles and laughs and it makes it all worth it. Hes taught me so much about life and although its very difficult at times to deal with two children that have chronic diseases we manage very well.
We are so thankful for the Make-A-Wish foundation giving us this opportunity to go on a vacation together as a family, we could never do this without them and Im thankful to all of you on this forum who share your stories, I love hearing about the trips and knowing what to expect. But I have to admit I am very worried because this all came about very quickly and I havent had any time to spend planning and now its down to the wire. I have to plan on creating an itinerary that will fit not only a disabled child but two 17 year olds and my 9 year old, pretty broad spectrum. Fortunately, the teens do help a lot with Andy and we will hopefully be able to spend one full day with just Jeff, me and Ally at Magic Kingdom, she only requests to go to the cinderella castle.
I have a question about the complimentary tickets. In the Itinerary we received from MAW it states, Complimentary tickets are available at Guest Services, can you request these tickets on more than one occasion or it is something you can only do once? Can you for instance ask for tickets to water park and on another day ask for tickets to Pioneer Museum? Im a little confused about that.
I have many more question but can't think of one at the moment...
I just hope it goes smoothly and everyone has a great time
