Trevor's Star Wars Make A Wish trip

[NEmel]

Not much going on. The kids were very sick last week but all is good now Trev goes in next week for his stress test and the following week for his cardiac MRI so please keep him in your prayers that all looks good and he can go another year without surgery. We are still waiting on dates...

Jackie

Sorry the kiddos have been sick. Will be thinking of Trev and a good outcome on the tests. We are still waiting on dates too, hope we both hear soon!

 

[Lilfoot93]

Continued prayers.

Glad the kids are better now.

Hope you get your dates soon. You might want to consider making ADRs now. Popular restaurants can book up quickly.

The MAW coordinator said hopefully 3 weeks and that is today! But no word yet... Of course they are waiting from HS then have to submit those dates to GKTW. If I don't hear back next week I will give them a call It seems SO much harder waiting this time around! Last time was 7 months of waiting to hear when SWW would be and now it has only been 3 weeks since I talked with our wish coordinator but it seems MUCH longer than that!

Not sure where to start with the ADR's. Our wish coordinator submitted 3 different dates so it could be anyones guess when we are going to be down there!

Sorry the kiddos have been sick. Will be thinking of Trev and a good outcome on the tests. We are still waiting on dates too, hope we both hear soon!

Thanks! Yes! I hope we both hear back soon! It is hard to be patient and wait

Jackie

 

[angel's momma]

Not much going on. The kids were very sick last week but all is good now Trev goes in next week for his stress test and the following week for his cardiac MRI so please keep him in your prayers that all looks good and he can go another year without surgery. We are still waiting on dates...

Jackie

Glad they're feeling better. Praying for the tests. Hope you get your dates soon.

 

[lovethattink]

Not sure where to start with the ADR's. Our wish coordinator submitted 3 different dates so it could be anyones guess when we are going to be down there!





Jackie

Not knowing exact dates is tricky. ADRs like Chef Mickey, Be Our Guest, Ohana, are probably all gone by now. Very soon the lunch and dinner times will be gone from Sci Fi and 50's PTC. If you think you want a sit down meal while at SWW, you should probably book that asap.

 

[kwitcherkicken99]

I'd book some and cancel if not needed. Better safe than sorry! Get the Wish coordinator involved too, maybe they can help pull some strings.

 

[Lilfoot93]

I just heard back from our wish grantor and we have a tentative date of June 2-8! We are waiting to hear for sure from the folks at Star Wars Weekend. GKTW has already reserved us a spot.

Trev has his stress test on Wednesday and on the 6th he goes in for his cardiac MRI. Please keep him in your prayers that everything looks great and we can hold off on surgery for at least another year! We should here back the middle of Feb. if he will need surgery or not.

Thanks!
Jackie

 

[angel's momma]

Yay for tentative dates - hope they are confirmed soon. Continued prayers for the tests, and that he won't need surgery. Prayers for you that you won't worry.

 

[lovethattink]

I just heard back from our wish grantor and we have a tentative date of June 2-8! We are waiting to hear for sure from the folks at Star Wars Weekend. GKTW has already reserved us a spot.

Trev has his stress test on Wednesday and on the 6th he goes in for his cardiac MRI. Please keep him in your prayers that everything looks great and we can hold off on surgery for at least another year! We should here back the middle of Feb. if he will need surgery or not.

Thanks!
Jackie

Oh yes!! Tentative dates, let the ADRs and plans begin!

June 2 to 8 will make SWW kind of tricky. June 2 is a Sunday, a SWW day, and your arrival day. June 7th gives you a whole SWW day. June 8th is a SWW day, but your departure day.

Will definately keep him in prayer for those tests and holding off on surgery. How is your daughter's ear doing?

 

[BridgetR3]

Yay!!! Your tentative dates are also in with our dates in the park!! Maybe we will see ya around somewhere! Praying for Trevor's tests!

 

[Lilfoot93]

Yay for tentative dates - hope they are confirmed soon. Continued prayers for the tests, and that he won't need surgery. Prayers for you that you won't worry.

Thanks for the prayers! Right now I am not stressing too much. He rides the bike for his stress test tomorrow... It is next weeks cardiac MRI that he will be under general anesthesia that has me a little worried. Then we wait a couple weeks until his case is presented to the surgical team to find out if he will be having surgery this year or wait at least another year. This wait and see game can be tough sometimes!

Oh yes!! Tentative dates, let the ADRs and plans begin!

June 2 to 8 will make SWW kind of tricky. June 2 is a Sunday, a SWW day, and your arrival day. June 7th gives you a whole SWW day. June 8th is a SWW day, but your departure day.

Will definately keep him in prayer for those tests and holding off on surgery. How is your daughter's ear doing?

It still seems a little surreal that we are actually going to Disney World! I have always dreamed of going and now we get to start planning
We are So excited!

When the wish coordinator talked to the folks at SWW they said it would be a one day thing with the wish kid. We can go another day if we wanted but we only have 3 days at Disney and we would like to check out the other parks too. So we will see if we go another day besides that Friday. The day we leave we have an evening flight so we should still be able to get some things in if we decided to see more Star Wars.

Thanks for the prayers! Greatly appreciated! Kara's ear is doing really well. Her surgeon was very surprised at how fast it has healed. She goes back in May for a hearing test and pre op and they will do another surgery this summer. Around her we talk about "step 2" which is our code word for surgery. We'll have to think of something else if she needs another surgery right after that one

Yay!!! Your tentative dates are also in with our dates in the park!! Maybe we will see ya around somewhere! Praying for Trevor's tests!

Thanks for the prayers! That would be great if we seen you! I'm hoping to be able to get firm dates soon. We are waiting for the folks at SWW to call MAW back.

Trev will be having a reveal for his dates a couple weeks before we go. My husband and I will know when we are going but we are not telling the kids until the big reveal. Trev thinks it will be great to have a party to find out when he gets to go to Disney World.

Jackie

 

[lovethattink]

Thanks for the prayers! Right now I am not stressing too much. He rides the bike for his stress test tomorrow... It is next weeks cardiac MRI that he will be under general anesthesia that has me a little worried. Then we wait a couple weeks until his case is presented to the surgical team to find out if he will be having surgery this year or wait at least another year. This wait and see game can be tough sometimes!



It still seems a little surreal that we are actually going to Disney World! I have always dreamed of going and now we get to start planning
We are So excited!

When the wish coordinator talked to the folks at SWW they said it would be a one day thing with the wish kid. We can go another day if we wanted but we only have 3 days at Disney and we would like to check out the other parks too. So we will see if we go another day besides that Friday. The day we leave we have an evening flight so we should still be able to get some things in if we decided to see more Star Wars.

Thanks for the prayers! Greatly appreciated! Kara's ear is doing really well. Her surgeon was very surprised at how fast it has healed. She goes back in May for a hearing test and pre op and they will do another surgery this summer. Around her we talk about "step 2" which is our code word for surgery. We'll have to think of something else if she needs another surgery right after that one



Trev will be having a reveal for his dates a couple weeks before we go. My husband and I will know when we are going but we are not telling the kids until the big reveal. Trev thinks it will be great to have a party to find out when he gets to go to Disney World.

Jackie

I'm glad you aren't too stressed right now.

There's always concern when they go under anesthesia. JJ hates needles so that's his biggest concern. We took him to a children's hospital for his MRIs and they were so good at keeping him calm and making it not scary. There was a anesthesiologist and a nurse anestithis in with him the whole time monitoring. Most of his seizures occur while sleeping so he was monitored closely.

By your dates, kennythepirate should have character times posted, so that will help. And previous weekend maps will have been posted, so you'll have a good idea of what's going on.

 

[Diegosmom]

woooohooooo for dates...

We will be there too but we are flying in on the 7th so we arent going to the park that day...our big star wars day is June 8th so we will probably miss you.

So excited you get to start planning now...

 

[lovethattink]

woooohooooo for dates...

We will be there too but we are flying in on the 7th so we arent going to the park that day...our big star wars day is June 8th so we will probably miss you.

So excited you get to start planning now...

Too bad you miss each other. We will be there June 8. Please say hello if you see us.

 

[kittyninja]

Just finished what you have of your PTR so far!! I just wanted to say that your children are amazing!! They are all little StormTroopers!! lol Pardon the pun! I hope you all have a great trip as you deserve it!! Quick side note: I'm in college getting a degree in Psych and Social Work and I'm now looking into a MAW internship after I get out of school!! You and your story has inspired me!! I want to do something meaningful and this may be it!!

Hope everything goes well with the tests. I'll be lurking around checking up on Trev and Kara!!

 

[JWCJ]

Phew, caught up on your PTR. Yay for dates! I was going crazy waiting for our dates so I could start booking a couple of character meals.


Hope everything is going okay today.

 

[Lilfoot93]

I'm glad you aren't too stressed right now.

There's always concern when they go under anesthesia. JJ hates needles so that's his biggest concern. We took him to a children's hospital for his MRIs and they were so good at keeping him calm and making it not scary. There was a anesthesiologist and a nurse anestithis in with him the whole time monitoring. Most of his seizures occur while sleeping so he was monitored closely.

By your dates, kennythepirate should have character times posted, so that will help. And previous weekend maps will have been posted, so you'll have a good idea of what's going on.

Trev hates needles too... Was JJ under general anesthesia then? Or were they in the room in case he needed it?

June 7th will be our SWW day. It sounds like there are some positives going at the end of SWW then! I just hope they have some cool souvenirs left by the time we get there.

woooohooooo for dates...

We will be there too but we are flying in on the 7th so we arent going to the park that day...our big star wars day is June 8th so we will probably miss you.

So excited you get to start planning now...

June 7th will be our SWW. Not sure what we will be doing the last day. I think our flight leaves in the evening so maybe we can get one more day of SWW in

Just finished what you have of your PTR so far!! I just wanted to say that your children are amazing!! They are all little StormTroopers!! lol Pardon the pun! I hope you all have a great trip as you deserve it!! Quick side note: I'm in college getting a degree in Psych and Social Work and I'm now looking into a MAW internship after I get out of school!! You and your story has inspired me!! I want to do something meaningful and this may be it!!

Hope everything goes well with the tests. I'll be lurking around checking up on Trev and Kara!!

Thanks! I think my kiddos are pretty amazing too I love that they are always so positive about the medical issues they are facing. In fact my 4 year is still talking about how maybe she will get another surgery someday. She is having another this summer but she does not know that yet.

That is so cool you are looking into a MAW internship! I think that would be an amazing and rewarding job. With this experience I think it would be cool to be a wish grantor. Seeing the joy on the kids faces is priceless!

Phew, caught up on your PTR. Yay for dates! I was going crazy waiting for our dates so I could start booking a couple of character meals.


Hope everything is going okay today.

It has been hard waiting for dates. But we knew we would have to wait when last May Trev picked Star Wars Weekend so we had to wait for those dates to be announced for this year. It has been much harder waiting for dates once SWW was announced!

Everything seemed to go well today. One more test next week then we will talk possible surgery this year.

Jackie

 

[Lilfoot93]

It's official!! We have dates After 8 months of waiting we finally have dates for Star Wars Weekend! We will be going June 2-8. Flying in the night of the 1st on a red eye flight. We are SO excited

We are not telling the kids the dates we go until the going away party a couple weeks before. Since they already know we are going we thought this would be a nice surprise for them. That way they only have to wait a couple weeks Then today my SIL called and said they were coming out from Montana in May so we are going to arrange the party around their arrival. That too will be a surprise to the kids!

I'm so excited to begin planning for real!!

Jackie

 

[Lilfoot93]

I'm a little post happy tonight

Trev did really well today during his stress test. We had a little scare when we first got there as I guess you need to be a certain height for the bike test and Trev was 1.5" to short. They had him sit on the bike and luckily the boy has long legs and just reached the pedals!

He had to do some breathing tests in a mask before starting and he did really well. His Oxygen levels were 100% the whole time! Amazing

The first 5 years he was always so blue I never knew pink could look so good on him Since his ASD was closed a couple years ago he has pretty good sats.

He was able to ride the bike for 7 minutes. They said they got some good results and he was on the treadmill long enough for them to get an accurate reading. They also said he would have been able to go longer if he were a little taller.

Here are some pics from this afternoon:

[/IMG]
Getting his EKG leads on.

[/IMG]
Getting base line breathing.

[/IMG]
All hooked up riding the bike.


He had so many wires and things attached to him I was surprised at how easy he made it seem! Every 2 minutes he would have to move his arm to his waist as his bp was measured. He had the EKG leads on as well as the oxygen sensor on his head. And that breathing piece! I was surprised he was able to shove that thing in his mouth and keep it there! He is truly a ROCK STAR!!

Next week he goes back to Children's for a MRI. This is the one that scares me as he will be under general anesthesia. We should know results of the tests in about 3 weeks and will know if surgery will happen this year or if he can wait at least another year.

Jackie

 

[angel's momma]

YAY for dates!!! How exciting about the party, and family visiting too. Looking forward to your plans.

So glad the stress test went well. That nose piece would have driven me crazy. Praying for the MRI, and all the results.

 

[lovethattink]

Trev hates needles too... Was JJ under general anesthesia then? Or were they in the room in case he needed it?

June 7th will be our SWW day. It sounds like there are some positives going at the end of SWW then! I just hope they have some cool souvenirs left by the time we get there.



June 7th will be our SWW. Not sure what we will be doing the last day. I think our flight leaves in the evening so maybe we can get one more day of SWW in

Yes, for all 3 MRIs he was under general anesthesia. Soon our insurance won't pay for the anesthesia because of his age. We'll have to get it pre-approved to have it covered.

Be sure to keep your eye out for us on the 7th. We will probably be there bright and early.

There should be plenty of glasses, t's, etc. Last year anything with the year on it that wasn't a limited item or specialty item was discounted the last weekend. So you may just get a deal.

That is great you may have the option to add a day at SWW if you need it.

It's official!! We have dates After 8 months of waiting we finally have dates for Star Wars Weekend! We will be going June 2-8. Flying in the night of the 1st on a red eye flight. We are SO excited

We are not telling the kids the dates we go until the going away party a couple weeks before. Since they already know we are going we thought this would be a nice surprise for them. That way they only have to wait a couple weeks Then today my SIL called and said they were coming out from Montana in May so we are going to arrange the party around their arrival. That too will be a surprise to the kids!

I'm so excited to begin planning for real!!

Jackie

Hurray for dates! Are you going to do something special to reveal their dates?

I'm a little post happy tonight

Trev did really well today during his stress test. We had a little scare when we first got there as I guess you need to be a certain height for the bike test and Trev was 1.5" to short. They had him sit on the bike and luckily the boy has long legs and just reached the pedals!

He had to do some breathing tests in a mask before starting and he did really well. His Oxygen levels were 100% the whole time! Amazing

The first 5 years he was always so blue I never knew pink could look so good on him Since his ASD was closed a couple years ago he has pretty good sats.

He was able to ride the bike for 7 minutes. They said they got some good results and he was on the treadmill long enough for them to get an accurate reading. They also said he would have been able to go longer if he were a little taller.

He had so many wires and things attached to him I was surprised at how easy he made it seem! Every 2 minutes he would have to move his arm to his waist as his bp was measured. He had the EKG leads on as well as the oxygen sensor on his head. And that breathing piece! I was surprised he was able to shove that thing in his mouth and keep it there! He is truly a ROCK STAR!!

Next week he goes back to Children's for a MRI. This is the one that scares me as he will be under general anesthesia. We should know results of the tests in about 3 weeks and will know if surgery will happen this year or if he can wait at least another year.

Jackie

Glad the stress test went well. Whew for long legs. He looks like quite the trooper and that it takes some good coordination to do the test.

Continuing to pray about the MRI and surgery. He's in really good hands having it done at a Children's hospital. We drove to All Children's in St. Pete for JJ's MRI because other MRI centers and even another hospital wouldn't take him because of the seizures in his sleep. I was worried about the test and the anesthesia. They were more worried about him getting a sick stomach on the way home. He was fine both at the hospital and the drive home all three times he had it done there.

The first time there was an emergency and our appointment was delayed 3 hours. That anticipation was hard on all of us. Plus because of the general anesthesia he had to be NPO and couldn't even have a sip of water. So after that I scheduled him as their first patient of the day for the subsequent ones.