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Old 01-13-2011, 08:10 PM   #1
Blessed03
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Talking Carter's MAW pre-trip report

I am a total newbie to all this and I have been reading a lot of the threads and have cried and laughed my way through a ton of them. So I will introduce my cast of characters:

Mandi (me, 28)
Carter (wish kid, 7...soon to be 8 on 3/21)
Doug (dad, 28)

I want to start from the beginning so you all can be aware why my DS is elegible for this magical and gracious gift to go to WDW.

My pregnancy from the beginning was typical to what most women go through, a little morning sickness and that subsided by only eating pickles..lol It wasn't until about my 4th month that Carter was trying to make his enterance into this world all too soon. Doctors put me on bed rest and medication to stop the early contractions. This continued and so did the ultrasounds to check what was going on. Well it ended up that on March 21, 2003 the morning of an appointment that the contactions were hard and coming sooner. He was going to be early and the Dr said that we should just deliver and take what we can day by day. Carter was born almost a month early and came out blue. He didn't cry. I kept begging 'cry Carter cry'. He eventually whined a bit but nothing loud. He was given the ok, but I still felt like something was wrong. We went home 3 days later.
At his 2 week check-up the peditrician heard a very loud murmur, he was very concerned that this wasn't heard at the hospital but insisted that we go see a cardiologist that afternoon. I was frantic and scared. What was going on with my sons heart? So we got our papers and drove to Dayton Children's Hospital about 15 min away. They ran almost every test that they could and confirmed that he did have an issue with his heart. Dr. Joseph Ross said Carter had a CHD (congenital heart defect) and was diagnosed with TOF (Tetrology of Fallot) He had two holes in his heart and a narrow aortic and issues with his mitral valve. I about fell to the floor. They said he'd about one when they would do the surgery to repair the holes and allow him to gain some weight. How were we going to wait day in and day out for almost a year for that to happen, didn't he need this now? So we took our baby home and cried and prayed. A few weeks later we had him baptized at this lovely baptism pool in Lebanon. Gathered by family and friends, we just felt it was the right timing and knew it needed to be done before anything were to happen.
Carter was almost 7 weeks old when his color never improved after I nursed him. He turned purple and almost fell asleep as soon as he was done crying or nursing. I called Dr. Ross and he said to come in right away. We took him in and they said it was a good thing we came because he may not of survived the night. His oxygen got to 13% and was not allowed to be stimulated so we were not allowed to hold him, touch him.. He was given oxygen and was to be transported to Children's Hospital in Cincinnati the next morning. We arrived at Children's and were quickly taken to the NICU where they hooked him up to IV's and monitored his oxygen. He underwent a 8 hr open heart surgery and came out broken and swollen. My poor baby laying there and I was not allowed to hold him, to soothe him or love on him. During the surgery a complication occured and a temporary pacemaker was put in. A week later he had a permanate one was placed. I was finally allowed to hold him and love on him. During the hospital stay he contacted an infection in his bloodstream and EVERYONE was scared it would compromise his recovery. Our family and friends did a prayer around him and the next day there was not a single trace that any infection had ever exsisted. We got to go home a few days later. He spent almost a month in Cincinnati and thank God for the miracle hands of his surgeon. Since then Carter has had his mitral valve repaired and also a SECOND pacemaker put in. He knows he's different but he also knows he's special. He calls himself bionic boy. We taught him "Chicks dig scars" and we are thankful for the scars that he is still here with us everyday.
Now that I have cried myself through this I will move on and look toward the bright side of this scary story. We are going to DISNEY! Our first family vacation without anyone else.. On our own, ooohh FUN!!
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Old 01-13-2011, 08:39 PM   #2
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so glad he is getting his wish
I can't wait to hear all about it
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Old 01-18-2011, 10:40 PM   #3
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Hi, another CHD Mom here. Lisa (my Wish child)...is 18 days older than Carter, born 3-3-03

I am looking forward to following along and reading more of your journey as you plan. I am so happy he is getting his wish!
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Old 01-19-2011, 06:54 AM   #4
Blessed03
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Smile Unreal

Thank you both for coming along on the journey to make his wish real. Its kind of unreal but for everything Carter has gone through and all our children go through everyday a week full of surprises that await is just another blessing. Ill be posting our weely tenitive plan soon, been trying to figure out how to accomplish it all without over doing it. Any suggestions will be thankful.
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Old 01-19-2011, 10:24 AM   #5
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Following along.... When are you going?
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Summer , Steve , Ciara 9 (wish child) , Brett 7 , Alyssa 16
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Old 01-19-2011, 02:01 PM   #6
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Quote:
Originally Posted by Ciara's Wish Trip View Post
Following along.... When are you going?
We have tenitive dates for the 5-11 of March. Not sure about flights. Hope we hear soon. Not sure how long it takes to get that kind of information
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Old 01-19-2011, 02:22 PM   #7
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March 5th is not that far away! I would think you would hear something soon! We extended and are leaving March 5th.
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Old 01-19-2011, 04:41 PM   #8
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Talking We have dates!!

So I heard from our lovely coordinator this afternoon and the dates we were given a week are firm Walt Disney World March 5-11. I can hardly contain myself. Carter got off the bus and I told him and his face lite up and he was so happy that he knows exactly when we will be leaving. I have so much to get done before then like SHOPPING. We both need new clothes and I will be sidetracked doing school and classes. How am I going to concentrate knowing that this is happening! YAY!!!

Side note- Carter isnt feeling well yet again. Its been almost a month that he complains of a headache, stomach or pacemaker pains. I worry that something is seriously wrong but he had a visit in Cincinnati last week and things look great from their standpoint. He has 6 years on one pacemaker and 8 on the other. I am glad that he'll be a bit older when they need to replace them but I still worry day to day that the wires will hold and do their job. Pray that my little guy feels better and that this is growing pains and all will be well come time for his trip to visit the "Toys with a Million Smiles"
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Old 01-19-2011, 05:55 PM   #9
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Congrats on getting a wish trip! I have a carter too.
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Old 01-23-2011, 05:16 AM   #10
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Yea for dates, That is aMAWzing news!
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Old 01-26-2011, 04:34 AM   #11
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Question Few Questions...

I was wondering if anyone had used the orlando stroller rental company? Carter tends to get tired and worn out most days when he walks a lot..(past trips back home to Gatlinburg) we won't make that mistake again. I want his trip to be free of any stresses..think my chapter would pay for the rental? Heard the strollers at parks are not to comfy..any thoughts would be helpful :-)
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Old 01-26-2011, 04:52 AM   #12
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Quote:
Originally Posted by Blessed03 View Post
I was wondering if anyone had used the orlando stroller rental company? Carter tends to get tired and worn out most days when he walks a lot..(past trips back home to Gatlinburg) we won't make that mistake again. I want his trip to be free of any stresses..think my chapter would pay for the rental? Heard the strollers at parks are not to comfy..any thoughts would be helpful :-)
I can't answer your questions; however, I wanted to suggest you post the question on the Wish Tripper's Thread. There is LOTS of knowledge on that board. Praying you have a great day!
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Old 01-26-2011, 10:02 AM   #13
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Hello!

I found you and am listing you on the MAW TR's on the Make a Wish thread!!

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Old 01-26-2011, 11:12 AM   #14
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Hi there and :Welcome aboard!!!

We will be staying at GKTW from March 3-March 8 for my DD's Wish trip! Maybe we'll see you there! This will also be our first family vacation together...I'm soooo beyond excited for this!
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Old 01-26-2011, 12:32 PM   #15
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Quote:
Originally Posted by Blessed03 View Post
I was wondering if anyone had used the orlando stroller rental company? Carter tends to get tired and worn out most days when he walks a lot..(past trips back home to Gatlinburg) we won't make that mistake again. I want his trip to be free of any stresses..think my chapter would pay for the rental? Heard the strollers at parks are not to comfy..any thoughts would be helpful :-)
Hi and Welcome! A great friend of mine has a son 3 with TOF. He's had several open heart surgeries over the last 6 years and I am encouraging her to start the wish process for him. Can't wait to read your PTR as you plan!

As far as the stroller goes... I was just sent some MAW/ GKTW info and it in they said that the MAW foundation would rent a stroller for you if you know that you will need them for your stay. I think I may go this route instead of taking one.
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