We found out in May that our son Trevor qualified for Make A Wish and he would be granted a wish! In June the wish grantors came and asked Trev what his wish would be. He said to be a Jedi during Star Wars weekend. Trev is obsessed with Star Wars and Legos! His back up wish was to go to Lego Land. Trevor found out a few days before his birthday that his wish will be granted!
Here is Trevor's story:
In the summer of 2005 I was on hospital bed rest waiting for my firstborn to make his arrival. I had many complications but nothing ever pointed to the fact that Trevor had anything wrong with him.
Trevor made his entrance and his hands and feet were a little blue ut the nurse reassured us this was normal for newborns. He was our first so we did not question it. The room was packed with family and friends and they were all holding him. I figured I would get my chance once the visitors left. Boy was I wrong! At a couple hours old the nurse said she had to do a routine check. Next thing I know there were about 10 doctors and nurses surrounding him saying he was very sick and needing to go to the NICU Immediatly. Our lives were forever changed.
I just had an emergency c section so I could not go with him. Luckily my Dad was still there and went with my husband to go to the NICU with Trevor. My friends stayed with me. My Dad came back up to my room and looked like things were very bleak. He explained something was wrong with his heart and they were uncertain if he would survive.
The Doctor came to the room and explained that Trevor was born with a congenital heart defect, pulmonary atresia w/ivs. Basically the blood flow from the heart to the lungs was blocked. He had to be rushed to the local children's hospital immediately. My dad and husband followed Trevor down there while my friend stayed the night with me.
At less than 48 hours Trevor underwent his first heart surgery. They put a stent in his PDA. And ballooned his pulmonary artery. The dr. still was unsure if Trev would make it. They tout he may be in the hospital for months. I finally was released when Trev was 4 days old and set up our home away from home. A little over a week later to the surprise of everyone our little rock star was released!
We had weekly monitoring by the cardiologist. At 3 months old he needed another heart surgery. Again Trev was a rock star and came home within a couple days. We waited for Trevor to gain enough weight for his next surgery. He surprised the doctors and his right ventricle actually grew to close to normal size!
At 9 months old he had open heart surgery to remove his pulmonary valve and conduit. As well as scrape out his right ventricle as it was very thick and muscle bound. Trevor had a very rough recovery. He was expected to go home within 5 days, but it was 5 days before he would even wake up! He had multiple high fevers, a blood transfusion and did not have the correct urine output. He. Finally did wake then had more fevers, could not eat (oral aversion ) and threw everything up. He ended up getting 2 new teeth and a double ear infection while in the hospital!
Since he was so behind developmentally he started 3 different therapies while in the hospital. After almost 3 weeks we were finally home! At 15 months he went in again for surgery.
Everything was going well until preschool and at 4 he had another heart surgery. Then the following year in kindergarten he got his appendix out! We are now waiting for his next open heart surgery where he will get a pulmonary valve and conduit.
Trevor is exceeding everyone's expectations. He is above grade level in reading, spelling and math. He loves to play soccer, baseball and basketball. He loves all things Star Wars and Legos.
3 years after Trevor was born we added twin girls to our family. Trevor just celebrated his 7th birthday this weekend and Allie and Kara are 3. We are so blessed to have Trevor in our lives. We are also very blessed for Trevor to be able to go one make a wish trip.
Thanks for reading! Sorry it is so long!
Jackie
Here is Trevor's story:
In the summer of 2005 I was on hospital bed rest waiting for my firstborn to make his arrival. I had many complications but nothing ever pointed to the fact that Trevor had anything wrong with him.
Trevor made his entrance and his hands and feet were a little blue ut the nurse reassured us this was normal for newborns. He was our first so we did not question it. The room was packed with family and friends and they were all holding him. I figured I would get my chance once the visitors left. Boy was I wrong! At a couple hours old the nurse said she had to do a routine check. Next thing I know there were about 10 doctors and nurses surrounding him saying he was very sick and needing to go to the NICU Immediatly. Our lives were forever changed.
I just had an emergency c section so I could not go with him. Luckily my Dad was still there and went with my husband to go to the NICU with Trevor. My friends stayed with me. My Dad came back up to my room and looked like things were very bleak. He explained something was wrong with his heart and they were uncertain if he would survive.
The Doctor came to the room and explained that Trevor was born with a congenital heart defect, pulmonary atresia w/ivs. Basically the blood flow from the heart to the lungs was blocked. He had to be rushed to the local children's hospital immediately. My dad and husband followed Trevor down there while my friend stayed the night with me.
At less than 48 hours Trevor underwent his first heart surgery. They put a stent in his PDA. And ballooned his pulmonary artery. The dr. still was unsure if Trev would make it. They tout he may be in the hospital for months. I finally was released when Trev was 4 days old and set up our home away from home. A little over a week later to the surprise of everyone our little rock star was released!
We had weekly monitoring by the cardiologist. At 3 months old he needed another heart surgery. Again Trev was a rock star and came home within a couple days. We waited for Trevor to gain enough weight for his next surgery. He surprised the doctors and his right ventricle actually grew to close to normal size!
At 9 months old he had open heart surgery to remove his pulmonary valve and conduit. As well as scrape out his right ventricle as it was very thick and muscle bound. Trevor had a very rough recovery. He was expected to go home within 5 days, but it was 5 days before he would even wake up! He had multiple high fevers, a blood transfusion and did not have the correct urine output. He. Finally did wake then had more fevers, could not eat (oral aversion ) and threw everything up. He ended up getting 2 new teeth and a double ear infection while in the hospital!
Since he was so behind developmentally he started 3 different therapies while in the hospital. After almost 3 weeks we were finally home! At 15 months he went in again for surgery.
Everything was going well until preschool and at 4 he had another heart surgery. Then the following year in kindergarten he got his appendix out! We are now waiting for his next open heart surgery where he will get a pulmonary valve and conduit.
Trevor is exceeding everyone's expectations. He is above grade level in reading, spelling and math. He loves to play soccer, baseball and basketball. He loves all things Star Wars and Legos.
3 years after Trevor was born we added twin girls to our family. Trevor just celebrated his 7th birthday this weekend and Allie and Kara are 3. We are so blessed to have Trevor in our lives. We are also very blessed for Trevor to be able to go one make a wish trip.
Thanks for reading! Sorry it is so long!
Jackie
I'm sure the force will be with you in regards to dates.
You should check out the weekend guests for each weekend and see if they are having one person that your son would be more excited to see. I know they have had the people that have played Boba Fet, Chewbacca and C3PO before.
So creative!
You have a beautiful family, I will be following your plans for your sons perfect wish trip.
We made the robes out of felt and found a great deal on it. We just made a slit in the middle for them to put over their heads then got some lighter colored felt for the belts. 
I am getting a lot of great tips and ideas from reading these boards though
Funny thing is with each of his 6 surgeries these are the same people that act like open heart surgery on your baby is no big deal
I saw the Blue Angels when my husband and I lived in Wilmington NC back in 2004 and he was the cutter the Diligence that is stationed there. I'm sure you will all enjoy it very much - bring earplugs if noise bothers any one though.
does not negate all the hardships and difficulties he has been through or might be through again one day. I've always said that some people just don't get it unless they live it, but that I wish with all my heart they never have the opportunity.
but hate that one day, we'll do this all over again you know. Enjoying our "normal" while waiting for the other shoe to drop...you never really let go of that fear or worry.
