Trev's Star Wars MAW trip

[Lilfoot93]

Fellow Star Wars fan here! Your story is so inspiring and your kids are adorable!

Thank you!!

Jackie

 

[blessedmom4]

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[Lilfoot93]

http://www.glitter-graphics.com

Thank you!!! I hope you guys had a wonderful Halloween!

Jackie

 

[mommy2mrb]

Hi Jackie, sorry for being MIA....for some reason the DIS dropped my subscription to your thread, thanks for the email over the weekend, will be back to get all caught up here!

we just got back from our weekend trip to Boston for the Be Like Brit Fall gala and we are just 18 days away from our trip to WDW! so have lots of stuff to get done for the trip and some holiday prep work too!

give the kids a big hug from us and I will go back and read your posts this week!

 

[blessedmom4]

Thank you!!! I hope you guys had a wonderful Halloween!

Jackie

It was FABULOUS!!! We will be here when you have time to post. Life gets in the way of DISing, I know that all too well.

 

[Lilfoot93]

Hi Jackie, sorry for being MIA....for some reason the DIS dropped my subscription to your thread, thanks for the email over the weekend, will be back to get all caught up here! we just got back from our weekend trip to Boston for the Be Like Brit Fall gala and we are just 18 days away from our trip to WDW! so have lots of stuff to get done for the trip and some holiday prep work too! give the kids a big hug from us and I will go back and read your posts this week!

No problem! I haven't been on much since I finished my TR. It feels kinda weird not to post all the time now!

I hope you guys have a great time at WDW!! I hope it is MUCH drier for you than it was for us! I have always wanted to see Disney during Christmas. I am sure it is extra magical during that time!

Jackie

 

[Lilfoot93]

It was FABULOUS!!! We will be here when you have time to post. Life gets in the way of DISing, I know that all too well.

These past few weeks have been crazy! Surgeries and lots of specialist appts and these were NOT for my wish kiddo! My twins thought it would be fun to follow big brothers footsteps luckily nothing life threatening like Trev.

Trev has had a rough time at school with the older kids picking on him. So much so his chest was hurting and he had shortness of breath and refused to go to school! I took him to cardiology and luckily they were panick attacks. Trevs next appt is in a few weeks and we will find out if surgery will be this year. He still does not have a pulmonary valve or conduit. He is excited for his next surgery and pretty excited to stay home and play video games and watch movies for a few weeks I however, am NOT looking forward to it'

Jackie

 

[mommy2mrb]

I finally got caught up!
sorry the rain continued throughout the trip, what a blessing Trev's day at SWW was hot and dry, love seeing his happy face during all the fun activities he got to do that day!
so unfortunate you had to be there during TS Andrea, we got some bad weather on our last two trips there too, but nothing like you had! best time to go to FL is winter, no rain and cooler temps!
the kids looked so cute in all there Mickey gear! and yay for so much ice cream!
great you got to meet Tink and her guys, they are so sweet!

happy we got caught up over the past couple days by email, I will be in touch after we get back from WDW and make some plans over the Christmas break!

hope you guys have a great weekend! see you soon!

 

[lovethattink]

These past few weeks have been crazy! Surgeries and lots of specialist appts and these were NOT for my wish kiddo! My twins thought it would be fun to follow big brothers footsteps luckily nothing life threatening like Trev.

Trev has had a rough time at school with the older kids picking on him. So much so his chest was hurting and he had shortness of breath and refused to go to school! I took him to cardiology and luckily they were panick attacks. Trevs next appt is in a few weeks and we will find out if surgery will be this year. He still does not have a pulmonary valve or conduit. He is excited for his next surgery and pretty excited to stay home and play video games and watch movies for a few weeks I however, am NOT looking forward to it'

Jackie

How did the surgeries go?

I'm so sorry that Trev is having such a rough school year. What has been done to stop the bullying? Panic attacks are not fun. Poor guy. I hope his appointment goes well. Please keep us updated.

 

[Lilfoot93]

How did the surgeries go?

I'm so sorry that Trev is having such a rough school year. What has been done to stop the bullying? Panic attacks are not fun. Poor guy. I hope his appointment goes well. Please keep us updated.

Kara's last surgery went ok. She had another growth in her ear that had grown in the last 6 months since her prior surgery... She had a lot of scar tissue since she had so many growths the first time around. She has permanent hearing loss in her left ear. It doesn't seem to bother her though! It is a moderate loss. They are doubtful the hearing will be restored as at her last hearing test a couple weeks ago it was the same as right before her second surgery. We go back in March to have another look and hearing test. She will be monitored closely for the next 3 years. Praying for no more growths in her ear!! Although she says she is ready for another surgery mommy is NOT!!

As for the bullying it seems like a lot of talk on the schools part. I haven't seen much done and I am there A LOT!! I have been trying to arm Trevor with things he can do and say and it seems like kids are starting to leave him alone but he says he sees these same kids doing it to other kids now. We have not had any incidents for 2 weeks now.

Thanks for the prayers for his upcoming appt. Oh how I really dislike cardiology appointments... Especially knowing surgery is imminent! If you ask Trev though he is ready!! Such amazing strength this kiddo has!

Jackie

 

[blessedmom4]

Jackie, I know the worry and concern for those cardiology appts, I am so sorry.

As for bullying? It is WRONG and I am sick of people paying lip service to it. It takes SO many forms and it is never right.

I wil continue to pray things can calm down for you and ANY surgery for ANY of your sweeties is done for now!!

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[Lilfoot93]

Jackie, I know the worry and concern for those cardiology appts, I am so sorry.

As for bullying? It is WRONG and I am sick of people paying lip service to it. It takes SO many forms and it is never right.

I wil continue to pray things can calm down for you and ANY surgery for ANY of your sweeties is done for now!!

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Thank you!!! I hope you and your family had a wonderful Thanksgiving!

Trev's appt is in a little over a week and I see myself watching every little thing over thinking why he might have chest pains or be out of breath or sleeping longer... You know how it is

School seems to be going a little better now. I have been at the school A LOT... I already volunteer once a week in Trev's class and stay for lunch and recess when I can but now I find myself there even more than that. As well as working at my girls school too (They are in 2 different schools this year)

Thanks for the prayers! They are greatly appreciated!

Jackie

 

[blessedmom4]

Jackie, praying 2014 brings health and peace!!

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[Lilfoot93]

Thank you!!

Jackie

 

[Huskerfan72]

Looks like your son had a great time. They are memories you will all treasure.

 

[Lilfoot93]

Looks like your son had a great time. They are memories you will all treasure.

He did have a great time! It has only been 8 months but at times it seems it was a lifetime ago we were there!

Jackie

 

[Diegosmom]

I finally got to read your trip report. I followed along for your PTR and we visited at the same time. We flew in the friday that you were at DHS and our first park day was sat...we got the tail end of Andrea but nothing like your days.

My little guy Diego had a great time although at the parks he just didnt seem like himself. Really tired and didnt eat a lot. I thought it was just the heat but a month later we learned that he had cancer. So I havent been on the dis too much so never got to read your report. Diego is in remission and has been granted a wish...so we are now planning our own wish trip. We wont be going till Dec 7th but starting my research and I hope/pray it doesnt rain.

How many hours did you stay at Seaword and did you feel that was enough time?

 

[blessedmom4]

 

[ncarolinababyblue]

Hey! I just read your widh

 

[Lilfoot93]

Thank you!! I hope you had a great Mother's Day too!

Jackie