aym4Him
DIS Veteran
- Joined
- May 2, 2012
- Messages
- 587
Hi, everyone.
My son, Ethan, has been granted a wish and we are heading to Disney World! This will be his first time and my hubby's first (his parents are joining us on their own dime- it will be their first time, too). I have been 3 times, but the last time was in 1993. It's been a while! We just got our dates and we will be there Nov 10-16th.
I'm very thankful to find you guys and all this information! I am feeling quite overwhelmed, though. I am not a planner by nature (much to my husband's chagrin) but am more of a fly-by-the-seat-of-my-pants-and-see-what's-gonna happen kind of girl.
A little about us. We are a family of 3 (4, counting our "firstborn" son, our Mini Schnauzer, Giggs). I'm Amy and I'm married to Dillon and Ethan is our little super hero. He's 3 and has had two open heart surgeries (with at least one more to go). At 5 days old, he was diagnosed with Transposition of the Great Arteries and a Ventricular Septal Defect. He had his first OHS at 9 days old to put his arteries (arterial switch) back where they were supposed to go and to have the hole in his heart patched- thankfully, the operation went very smoothly. He had some hiccups in recovery (collapsed lung, feeding issues, etc) but was able to come home after a month.
During one of his routine followup visits with his cardiologist, an issue was discovered about a month and a half after he was discharged. In 5% of cases, scar tissue can develop from all the suturing required to re-attach his arteries to (what should have been) their native valves on the proper ventricles. He was one of the "lucky" 5% and had developed narrowing in his pulmonary artery and valve due to this. After an unsuccessful heart cath to try and widen things up, he underwent his 2nd OHS at 4 months old. It was successful but he will need his pulmonary valve replaced at some time in the future b/c he will outgrow the one he was born with due to the synthetic patch used to widen it.
For all intents and purposes, he is a typical 3 year old boy. In fact, he has given us his first non-heart emergency issue just this week! He swallowed a ball bearing (the size of a small marble) and was pretty proud to show off the xray to his teachers and friends at school and church. It successfully exited his system within a 24 hour period, so we are thankful.
Anyway, that's our story. Ethan has his annual cardiology check up on May 15th so prayers that all is well are appreciated! I'm so paranoid that something will go awry now that we have our dates for Disney! (Because, that's just how us Durhams roll!!!
)
You can read more about Ethan here
What should I be doing now, other than feeling giddy and a bit overwhelmed? Hehe. We definitely will be buying MVMCP tickets for all of us. How soon do we need to do that? What about ADRs?
Thank you thank you thank you!!
My son, Ethan, has been granted a wish and we are heading to Disney World! This will be his first time and my hubby's first (his parents are joining us on their own dime- it will be their first time, too). I have been 3 times, but the last time was in 1993. It's been a while! We just got our dates and we will be there Nov 10-16th.
I'm very thankful to find you guys and all this information! I am feeling quite overwhelmed, though. I am not a planner by nature (much to my husband's chagrin) but am more of a fly-by-the-seat-of-my-pants-and-see-what's-gonna happen kind of girl.
A little about us. We are a family of 3 (4, counting our "firstborn" son, our Mini Schnauzer, Giggs). I'm Amy and I'm married to Dillon and Ethan is our little super hero. He's 3 and has had two open heart surgeries (with at least one more to go). At 5 days old, he was diagnosed with Transposition of the Great Arteries and a Ventricular Septal Defect. He had his first OHS at 9 days old to put his arteries (arterial switch) back where they were supposed to go and to have the hole in his heart patched- thankfully, the operation went very smoothly. He had some hiccups in recovery (collapsed lung, feeding issues, etc) but was able to come home after a month.
During one of his routine followup visits with his cardiologist, an issue was discovered about a month and a half after he was discharged. In 5% of cases, scar tissue can develop from all the suturing required to re-attach his arteries to (what should have been) their native valves on the proper ventricles. He was one of the "lucky" 5% and had developed narrowing in his pulmonary artery and valve due to this. After an unsuccessful heart cath to try and widen things up, he underwent his 2nd OHS at 4 months old. It was successful but he will need his pulmonary valve replaced at some time in the future b/c he will outgrow the one he was born with due to the synthetic patch used to widen it.
For all intents and purposes, he is a typical 3 year old boy. In fact, he has given us his first non-heart emergency issue just this week! He swallowed a ball bearing (the size of a small marble) and was pretty proud to show off the xray to his teachers and friends at school and church. It successfully exited his system within a 24 hour period, so we are thankful.
Anyway, that's our story. Ethan has his annual cardiology check up on May 15th so prayers that all is well are appreciated! I'm so paranoid that something will go awry now that we have our dates for Disney! (Because, that's just how us Durhams roll!!!
)You can read more about Ethan here
What should I be doing now, other than feeling giddy and a bit overwhelmed? Hehe. We definitely will be buying MVMCP tickets for all of us. How soon do we need to do that? What about ADRs?
Thank you thank you thank you!!
If we could do it over again, I would save the money! 
I don't know what we'll do when it completely falls apart! He also has a pair of beloved boots that I found at a consignment store that are too small for him and, wouldn't ya know it, Gymboree doesn't make them anymore? Hahaha..
. He carried those guys with him everywhere. As I type, he's supposed to be getting into his PJs for bed but he is putting on his Woody costume. 
!! I don't dance, but I think I could bust a groove like Mr. Banana up there- I think the last time I felt this relieved and happy was during his first open-heart surgery when the surgeon called and said his coronary arteries were long enough to make the arterial switch!! Well, then and afterwards when Dr. M (his surgeon) and Nurse Kathy came out with smiles and hugs all around!! I didn't realize just how much anxiety and stress I was harboring over this until after his appointment- and, I'd be pinching myself if Ethan's cardiologist hadn't done the echocardiogram himself. It was so good to have him point out exactly what he was looking at. Even though there is still some regurgitation around his pulmonary valve, it's not enough to affect his heart function. The right side of his heart is stable and hasn't gotten any larger that it looked after he had his 2nd surgery (at 4 mos old to relieve the pulmonary stenosis/narrowing around the artery and valve). This means his valve replacement surgery is so far into the future that he could be a young adult before he needs another! He even used the words "if ever." 
That's pretty amazing! Anyway, we found out that the flights for our trip probably won't be booked until September, so I guess we're kind of in limbo regarding whether or not we'll want to extend the trip (either go down early or come back later) a few days. 
It's all good, though. I know Ethan will adore GKTW so whatever else we do will be a cherry on top! 5 days to fit in all that fun is just too crazy to plan, anyway! 
. Then again, it could be the dinner/breakfast of his life! LOL. I can't get a straight answer out of him over what his fav character is, at the moment. I would normally say Buzz or Woody but I think he's crushin' on Minnie Mouse at the moment! I know better than to ask who he would want to eat with (b/c eating means having to stop playing around, etc) so I tried asking him who he wanted to give the biggest high 5 to, etc. One minute, it was Minnie, followed by the whole Mickey Mouse Clubhouse Posse (including Pete and Clarabell!). The next, it's the Toy Story crew. Throw in Sully and Mike and you have one confused kid- too many to sort thru! 
)
They had their kids' shirts for $5 but the best ones were already gone, in E's size (DH really wanted to get E an Avengers shirt). I found a couple for me (in the ladies' section, har har) but I think I'll be more comfy if a slim down a couple of pounds. Hopefully, they'll work by November! Just need to 
<- exercise. 
.
I'm afraid it's not that exciting, compared to some of the many PTRs I've read, but thanks for joining in!! 
