My son's Make-A-Wish trip t

[duquette25]

thank you. i'm in the process of downloading more pics to photobucket, but it's taking me forever to get it done. i'm sure the kids will love every minute at WDW.

 

[bigdisgrandma]

Reading your story brought back such memories to me of my daughter's experience when Karlyn was born. They were told very many of the same things you were. Prenatal ultrasounds indicated some severe defects, not just with her heart but many of her internal organs. Then an amniocentesis determined that she had DiGeorge syndrome that had affected the development of her organs. We did not know what exactly to expect but at least we were somewhat prepared. Thankfully, it wasn't quite as drastic as what they told you and your husband. These miracle children are so truly amazing to me. I know that God really hears and answers prayers, regretably, the answers are not always what we want but are what we can handle.

Can't wait to hear more!
Denise

 

[duquette25]

Ethan was tested for DiGeorge syndrome as well, but they couldn't find anything, all the results they did came back that he didn't have anything. We're trying to get other tests done, but nothing comes of them. I am going to post more pics in a few minutes. I would love to see pics of your daughter.

 

[Leger13]

Carla-he's a fighter, he is a cutie, lol, but he's a handful sometimes

trentmom-thank you i hope we all have a blast

jh-pestering me that's funny. he is a fighter and i'm glad he is he fights for all of us aww that's sad to hear, i'm sorry to hear that. things are great now. he's a good kid

oh I'm sure he is a handful...well, I know he is but I'm sure it's all worth it.

I guess I should at least post here since I've been pestering you with PMs What a sweet baby picture! I can't imagine all that you have gone through. My heart aches hearing about planning a funeral. My first baby died at birth and picking out an outfit to bury him in was almost unbearable. I'm glad Ethan was (is) a tough little fighter! Those boys are going to have the best time at Disneyworld!

I'm so sorry to hear you had a stillborn That breaks my heart. My brother and sister in law went through the same thing a few years ago with their 2nd son. That is always just so sad.

 

[duquette25]

It is all worth it. Some days are better than others, but ya know all kids have attitude problems

I have some more pics of the kids.
my husband swinging with both kids in his lap lol

this is ethan and his grandpa (he thinks this man hung the moon and stars)

jeremiah and ethan (aren't they cute?) lol

ethan riding his little horsey thing lol

one of the many spica casts that he had

here's a horrible pic for ya lol this is me and my husband the day we got married

this is my dorky brother and my mom the day of my wedding in 2003

2 weeks after his first heart surgery

the night before his second hear surgery

I think that's enough for now lol. I'll post more later.

 

[Leger13]

Shavone,
I don't think I'd ever seen that cast before...the one with the bar across his legs. How ever did you carry him??

 

[duquette25]

That was the HORRIBLE HORRIBLE cast, that the other quack put on him. I only took pics of it just in case we had to file a lawsuit against the dr that did it because it cut him pretty badly on his back and butt. OMG girl that cast was awful to carry him around in. I despised that cast lol. It was good for the bird to sit on though

 

[Leger13]

That was the HORRIBLE HORRIBLE cast, that the other quack put on him. I only took pics of it just in case we had to file a lawsuit against the dr that did it because it cut him pretty badly on his back and butt. OMG girl that cast was awful to carry him around in. I despised that cast lol. It was good for the bird to sit on though

It looks like it!! It cut him?? OMG! That is terrible!! What a dumb doctor putting that cast on him that way. I'm s ure it was awful carrying him around with that cast. what a dumb move by that stupid doctor. How long did he have to wear that thing?

 

[duquette25]

UMMMM, that cast was on for uh um lol 2-5 weeks I think. I really don't remember, but yes that dr was very very very very very very dumb and stupid. He really ticked me off. I have more pics lol.

eight days after his first heart surgery

me (when i was fatter lol) getting to hold him for the FIRST time

jason holding him (ain't he tiny)

lol jeremiah in our first swimming pool (he bit a hole in it)

the morning of his 2nd heart surgery

 

[Leger13]

awww Ethan was so itty bitty! And Jeremiah, awww Leave it to him to bite a hole in the pool

 

[bigdisgrandma]

Ethan was tested for DiGeorge syndrome as well, but they couldn't find anything, all the results they did came back that he didn't have anything. We're trying to get other tests done, but nothing comes of them. I am going to post more pics in a few minutes. I would love to see pics of your daughter.

You can see pictures of my granddaughter Karlyn on her PTR. The link is at the bottom of the post. When I was reading about Ethan to my daughter Lindsey, Karlyn's mom she said "Mom that's just what they told us before Karlyn was born." She has had 2 major open heart surgeries. It wound up that she had Pulmonary atresia--no true arteries to take blood to her lungs to be oxygenated and a large VSD. At this point they have fixed her heart as much as they can but the vessels in her lungs are not able to carry the blood to be oxygenated and now her lungs are slowly losing their ability to function. I think Lindsey has written about it in the PTR. We are just so grateful at this time while she is still relatively healthy to make this trip as we don't know how long she will be well.

Those heart surgeries pictures can really get to you in a hurry can't they. I much prefer seeing pictures of little boys playing in the mud!

thanks again for sharing your story.

Denise

 

[duquette25]

It sounds like she's got some of the things that Ethan has. I won't post any of his surgery pics. I'll post his after surgery pics. Those aren't that bad. It sounds like you have a fighter as well. It's tough to go through something like this. I will have to read about her on the other thread.

Carla-yep leave it to my huge man to chew on plastic lol, he's a dork

 

[duquette25]

this is my boys eating jelly lol

this is the night before they put the first spica cast on him

jeremiah holding ethan with his first spica cast on

ethan was playing with some balls

ethan had clothes on his head lol

ethan 2 weeks after first surgery

ethan's surgeon

ethan the day he was born in the NICU

ethan snoozing in his wagon lol

 

[duquette25]

I have more pics lol.
Jeremiah and Ethan before church.

Ethan in his suit

me and ethan at chucky cheese

ethan diggin with his grandpa

my boys colorin on the porch

ethan bein silly

ethan playin with his cars

he was very very sick

jeremiah's 4th bday

jeremiah in his suit easter i think

my boys did the puzzle

ethan's 3rd bday

ethan being sexy lol

ethan's bday

jeremiah with one of the dogs we watched in april of 08

me jeremiah and ethan with the dogs we watched in april of 08

jeremiah at sports camp

me the boys and the easter bunny

 

[duquette25]

http://www.disboards.com/showthread.php?p=27126453#post27126453


this is that lady's thread about her completed report.

 

[Trentmom]

That was the HORRIBLE HORRIBLE cast, that the other quack put on him. I only took pics of it just in case we had to file a lawsuit against the dr that did it because it cut him pretty badly on his back and butt. OMG girl that cast was awful to carry him around in. I despised that cast lol. It was good for the bird to sit on though

WOW, that cast was awful. What a quack of a doctor.

I really enjoyed all of your pics

Is he out of those spica casts now?

I love the one of him in his sailor suit

 

[Trentmom]

http://www.disboards.com/showthread.php?p=27126453#post27126453


this is that lady's thread about her completed report.

Okay, I read that report

Do not listen to it


There are 100s of awesome stories on the Trip report section.

Try looking at one of the ones that are going on now.

Don't worry

 

[duquette25]

No, he's not in those casts anymore thank God, it was awful. He was in a cast for 6 months and it was horrible. He's doing really good right now. They're excited about going to WDW. Me too, it's a much much needed vacation espeically with everything that's going on around here.

 

[Trentmom]

No, he's not in those casts anymore thank God, it was awful. He was in a cast for 6 months and it was horrible. He's doing really good right now. They're excited about going to WDW. Me too, it's a much much needed vacation espeically with everything that's going on around here.

Thank goodness. So happy to hear that.

You know what you should do, if you have not already

Go to Youtube and show them some of the rides

Start getting them excited. To get an idea of what rides they will like

 

[duquette25]

Just type in WDWRides at youtube? lol