Trevor's Star Wars Make A Wish trip

[Lilfoot93]

Have they talked about heart transplant, or is it better to maintain his own heart rather than get into all the dangerous side effects of transplant meds? Matthew has congestive heart failure due to him being on hemodialysis at such a young age, but we are VERY fortunate that his heart regained a LOT of his prior function back after transplant when his blood pressure went back to near normal levels.
I hate the "waiting til they are sick enough" wait! I am SO happy and just in awe of how far my son has come (I'm positive you can relate!!) 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. But on the other hand, it makes you that much more thankful for all that you do have - all that our sons can accomplish because they were able to be helped.

When he was first born they said heart transplant would be a last resort. They haven't talked about it recently. I am glad to hear that Matthew did not need one.

I too, hate the "waiting til they are sick enough" wait! That is where we are at right now. It is so hard! He could need his valve replacement next year, which I am scared of because his trip will be in May of next year, or it could be 3-4 years away. Of course with Trevor just turning 7 he is more on the excitement end of having another surgery. I mean how can you go wrong having mommy and daddy's full attention, movies, ice cream, the nurses bringing you whatever you want! I hope he keeps this attitude for awhile!

I do agree that we are much more thankful for what we have because of all we and our kiddos have gone through.

I am just now getting around to catching up on all of the pre-trip reports!

I love the birthday party pics! Looks like the kids had a BLAST!!

You guys will just LOVE Star Wars Weekend!!

Thanks! The kids are still talking about it! Now what to do with my girls... They want a rainbow Star Wars party but they will be turning 4 in a few weeks and we are not going all out like we did with Trev's. We are going to have it more at a 4 year old level

Looking online Star Wars Weekend looks like it will be a blast! My only concern is the heat as it does not get that hot here. I can't wait until they post what will be happening next year at Star Wars Weekend so we can start planning that what Trev wants to do. Right now he says he wants to do it all... This shall be interesting

 

[carebearkidney]

Hmmm...four year old (x2) girl Star Wars party...that's is a tall order!
Maybe you could go with Ewoks? Or planets and stars? Or even a princess theme, but everyone will wear honeybuns instead of crowns.

I'm such a Star Wars geek and I'm just LOVING that your trip is all about Star Wars!

 

[Lilfoot93]

Hmmm...four year old (x2) girl Star Wars party...that's is a tall order!
Maybe you could go with Ewoks? Or planets and stars? Or even a princess theme, but everyone will wear honeybuns instead of crowns.

I'm such a Star Wars geek and I'm just LOVING that your trip is all about Star Wars!

So far we are going to make some Star Wars cookies and some rainbow cookies to make ice cream sandwiches and have a rainbow pinata and a death star pinata. Not sure what else after that : I really need to start planning though as there birthday is approaching fast

I think my husband is just as excited for Trevor's wish to be revolved around Star Wars Weekends too! You should listen to the two of them talk! I am slowly learning about Star Wars. Especially since all 3 kids love it too.



For those of you who have been to Star Wars Weekend is it something that can be done in a day? or more? I have never been to Star Wars Weekend let alone to Disney World so this is all new to me!

Jackie

 

[carebearkidney]

For those of you who have been to Star Wars Weekend is it something that can be done in a day? or more? I have never been to Star Wars Weekend let alone to Disney World so this is all new to me!

Jackie

Yes, completely doable in one day! Make sure you do make time for the parade - as everyone will see lots of characters they normally won't have out any other time - Luke, Leia, Anakin, Padme, Vader...the whole happy dysfunctional Skywalker family.
Also, get there about 20 minutes before HS opens the day you are going -they have a little "performance" by the stormtroopers to open the gates. Since I've seen it once, I wouldn't be bothered to see it again, but I think the kids will love it and it will make things more real for them.

 

[Lilfoot93]

Yes, completely doable in one day! Make sure you do make time for the parade - as everyone will see lots of characters they normally won't have out any other time - Luke, Leia, Anakin, Padme, Vader...the whole happy dysfunctional Skywalker family.
Also, get there about 20 minutes before HS opens the day you are going -they have a little "performance" by the stormtroopers to open the gates. Since I've seen it once, I wouldn't be bothered to see it again, but I think the kids will love it and it will make things more real for them.

Thanks for the advice! He is getting even more excited about going next year now that he just had a Star Wars birthday and now he is currently at Star Wars acting camp!

Jackie

 

[Lilfoot93]

We went to the Seafair events today with Make A Wish. It was AMAZING! We toured the hydro pits, met the drivers and got pictures and autographs, and watched the blue angels. They really spoiled the wish kids too! We needed an extra bag just to put all the goodies! The kids had a blast and want to go back again.

The drivers were excited to meet the wish kids. I got a little emotional when they were talking with Trev and asking what he has gone through. Of course he excitingly told them about his surgeries

One of the Make A Wish staff asked Trev his name he told her and immediately she said "oh! You are the Star Wars Weekend Trevor!" his eyes lit up and he was talking about his wish with her. He was very excited she knew who he was

Jackie

 

[texastwinmom]

Hi jackie! Ohh! What a great Wish! I just got caught up on your thread here (I'm learning all the lingo, PTR I guess I should say. You have such a beautiful family!!! How cute you have twin girls!!! I bet your son is a wonderful big brother to them, he's such a brave, handsome little warrior!!! I'm so happy he is going to have this opportunity!!! So funny, I just saw the "Noodle Sabers" on Pinterest today and thought WOW!!!! What a cool idea and pinned that right away..LOL What a cool party!!!

Seafair sounds awesome!!!! So glad ya'll were invited to go do that!

 

[LindaBabe]

Sounds like your Trevor is a tough little cookie! I'm so glad he was granted a wish

 

[Lilfoot93]

Hi jackie! Ohh! What a great Wish! I just got caught up on your thread here (I'm learning all the lingo, PTR I guess I should say. You have such a beautiful family!!! How cute you have twin girls!!! I bet your son is a wonderful big brother to them, he's such a brave, handsome little warrior!!! I'm so happy he is going to have this opportunity!!! So funny, I just saw the "Noodle Sabers" on Pinterest today and thought WOW!!!! What a cool idea and pinned that right away..LOL What a cool party!!!

Seafair sounds awesome!!!! So glad ya'll were invited to go do that!

Trev is a great big brother! The Star Wars party was a lot of fun to plan!

Sounds like your Trevor is a tough little cookie! I'm so glad he was granted a wish

Thanks. He is our little rock star!

Jackie

 

[Lilfoot93]

Here are some more pics of Trev before his last heart surgery. He was a month shy of his 5th birthday here.

The best part of any hospital stay is the popsicles and movies!

 

[Lilfoot93]

And because heart surgeries are not enough... He had appendicitis in Kindergarten. Here are some pics from his latest surgery.

He LOVES the fact that he has surgeries... While I on the other hand am dreading his next one. And everyone for that matter! It is what he knows so he is not scared. We have told him everything a 7 year old needs to know. Hopefully we have a few years before the next open heart surgery.

Jackie

 

[carebearkidney]

What a brave, handsome young man! I wish Matthew was not so traumatized by hospitals and surgeries...but we'll get there. And if not, we'll have to call on Trevor for the old Jedi mind trick!

 

[Lilfoot93]

What a brave, handsome young man! I wish Matthew was not so traumatized by hospitals and surgeries...but we'll get there. And if not, we'll have to call on Trevor for the old Jedi mind trick!

Thanks! He is our rock star! He loves hospital stays so much he wishes his sisters would have the same chance as him he really means it in a loving way too... He is always telling them about how he gets ice cream and Popsicles and movies all day and night!

Of course the girls want a hospital stay now

Hopefully with Matthew being granted a wish it will help distract him from being scared of the hospitals.

Jackie

 

[Lilfoot93]

Not much going on right now. Trying to start some planning but with Trev's wish trip not happening until May it has been hard to sit down and make plans.

In other news Trev lost his tooth! Number 4 finally came out... He was trying to wait until school started again

Kara ended up getting an ambulance ride and a trip to the hospital over the weekend. She fell off the swings and knocked herself out. Now all 3 kiddos have had an ambulance ride so hopefully that will be it! Nothing like keeping me on my toes!

Kara is doing much better now. Trying to keep a 3 year old from running and jumping around has been hard!

Jackie

 

[Lilfoot93]

The kids are getting really excited to fly in a plane. We live next to a small airport and watch planes take off and land all the time. They kept asking if we were going to fly to Florida in one of those planes?

I tried explaining how big the planes are that we will be going on. They didn't seem to get it so I took them to Boeing Field to the flight line and they got to see dozens of planes ready to be tested. They didn't get to see any take off but they were still super excited to see all the "humongous" planes!

They have been telling everyone that they are going on a humongous jet plane to Florida to see Darth Vader

Please keep Trev in your prayers. He has been turning a little blue when he swims and has said he can feel his heart beat. Those two things always scare me! Have a call into the cardiologist. Hoping it is just from it being a little cold out while he is swimming, and feeling the heartbeat because he has been playing so hard. Although he has never mentioned it before! But maybe he really never noticed... Everything else seems fine but you never know! Especially since we are currently waiting for his next surgery.

Jackie

 

[Lilfoot93]

Trevor has been doing better. Went to the ER and had an echo and EKG done. Everything looked pretty good so they said to keep an eye on him and if it happens again to let them know. He may need a 24 hr holster monitor. Otherwise we go to the cardiologist in December.

Jackie

 

[Lilfoot93]

Things have been going pretty well. My Father in Law is done with radiation... Yay!! He is slowly getting his energy and voice back. So that is all good!

Trevor is getting ready to start the 2nd grade this week! It is amazing! When he was born it was hard to think of him going to school as we did not know what the future held for him. We lived day to day especially that first year. We are still living in a world of unknowns and always will. But with technology advancing so much each day maybe that will change!

Trevor is so excited for school to start. Especially since he knows at the end of the school year he gets to go on his wish trip! We are all starting to get excited about it.

Allie and Kara turn 4 this week and start pre-K next week. They too are excited for starting school. Although they want to go to Trevor's school

We have our next cardiologist appointment in December. I'm a little nervous that he will need his pulmonary valve and conduit placed this year. I wish the cardiologist could just tell me the exact time frame it needs to be done but of course he can not... The last 2 years it has been anytime from now until he is 12 or 13. It makes his appointments SO stressful!

From reading PTR I see some extending their trips, so I am hoping we will be able to do the same. It looks like Star Wars Weekend dates are usually not posted until Jan or Feb so we will wait for our dates until then. In the mean time Trev has been watching a lot of You Tube videos and of course wanting to see everything! At least we have a few months to narrow it down

Jackie

 

[LindaBabe]

Glad to hear things are going well for you folks. It must be tough, waiting for the unknown!

Shhhhhh! I got a package of Star Wars paper and supplies in the mail today

 

[Lilfoot93]

The waiting is very hard! Every Cardiologist appointment we are on pins and needles waiting to see if this is the time for his new valve and conduit. Every time he is out of breath or his lips turn blue it is in the back of your head, maybe the time is now...

But they really want to wait until his heart is adult size before they put the pulmonary valve and conduit in. Now to see if his body can handle that for the next 5 years...

Thank you so much!! He will absolutely love it!!

Jackie

 

[yeti5353]

just be sure they go in the checked luggage going home. read some heart wrenching stories of light sabers being confisacted by the TSA in orlando!