Korissa's ~MAGICAL-AMAZING~ 10 day MAW/GKTW Adventure!! Discovery Cove day started

[chelleydi77]

I am loving your TR!!! Kylee makes a beautiful princess!

 

[p00h4me]

Hi Kris,
Wonderful 2nd day pictures at the Magic Kingdom! Sorry about the stressful morning. Can't believe you got those great pictures of the castle while you were running! So glad that everything worked out OK and that Kylee finally got the BBB experience this time since she wasn't able to on her wish trip. Love the photopass pictures of her! Such a lovely princess!

Even with your late start, you all got a lot of rides and character meets done. The park looked pretty crowded in your pictures. A great fun filled day!

 

[jon03015]

I have just read about your family. You are all amazing! We are from the LA area as well, glad to see a fellow LAian on here. Your trip looks amazing! So happy for your family, you guys deserved this trip.

 

[blessedmom4]

Dear Kris,

I LOVED the photos and seeing how your day unfolds. I was SO sorry to hear about the rough start; however, like the resourceful Mom you are, you managed to get it all accomplished and everyone has WONDERFUL smiles to show the great time you had! It sounds VERY crowded though Kylee looks BEAUTIFUL and it is evident Korissa is having a VERY magical trip, Praise God! THANK YOU for all of the pictures, I know what a LOT of hard work that is!!!

 

[that's nice]

I think I am exhausted just from reading the rest of your day .. wow, you guys were busy! The pictures really do tell the story- everyone has big smiles (well, except Kylee on the HM! LOL)

Too bad you couldn't stay for Wishes.. I think it started at 10 while you were there? That is late and you did miss the mass exodus out of the park.

Thank you Tim

I was told about the fevers(anything over 38c). Did Juliana have fevers even when the Port wasn't in use?? We won't be using Kylee's Port except for the monthly flushes and when she is admitted to the hospital. Do they normally have monthly blood draws too? The home health nurse will be out on the 28th to do her Chem 14 panels. Not sure if we have to do this monthly too.

I think we had to bring her to the hospital 7 (?) times over her 5 months on treatment for fevers. They always pumped her full of antibiotics. Reason being is that port is a line directly to the heart. If there is any bacteria in that line, it would get pumped thought the body= NOT GOOD! So she also had to get the port accessed to run full labs as well. Loads of fun in the middle of the night with a tired 1yr old.

She only had the port while on chemo so it was being accessed weekly. She had the port placed on April 2nd and her port was removed on Sept. 13th- one month after her final chemo.

 

[tinytreasures]

Funny you both were told to worry about Fevers. We were never told that. I didn't play with him at all if he was running a fever I brought him in and they treated him. They did jump fast when he got a blood clot in it. They found it on thur and he had it out on Tue.

LOVE LOVE LOVE the smiles on your girls faces as Cinderella is signing their book

 

[mommy2mrb]

wow, what a fun filled day! love all the photo! so happy everyone got to ride and see their favorites!

happy to hear Kylee is back to school and feeling good !

hope you all have a blessed Easter!

 

[Mom2mitokids]

I am loving your TR!!! Kylee makes a beautiful princess!

Thank you Michelle

Hi Kris,
Wonderful 2nd day pictures at the Magic Kingdom! Sorry about the stressful morning. Can't believe you got those great pictures of the castle while you were running! So glad that everything worked out OK and that Kylee finally got the BBB experience this time since she wasn't able to on her wish trip. Love the photopass pictures of her! Such a lovely princess!

Even with your late start, you all got a lot of rides and character meets done. The park looked pretty crowded in your pictures. A great fun filled day!

Thank you Gail It was so crowded on Mainstreet and running was fun..not...lol. We got to do a lot. Still a few things we weren't able too. Even with the button..we had to wait 30min for a lot of rides. We had to skip the Jungle Cruise ride and we never did see Mickey and Minnie Mouse, Goofy, Pluto, and Donald Duck.I believe they were at the front and since we had to run through that...we didn't see them.

I have just read about your family. You are all amazing! We are from the LA area as well, glad to see a fellow LAian on here. Your trip looks amazing! So happy for your family, you guys deserved this trip.

Thank you. Where in So Cal are you? Does Austin go to CHLA? I just read your story and boy...Austin sure has been through alot in the last year. I sure hope MAW gets back to you real soon. I will be following your PTR.

Dear Kris,

I LOVED the photos and seeing how your day unfolds. I was SO sorry to hear about the rough start; however, like the resourceful Mom you are, you managed to get it all accomplished and everyone has WONDERFUL smiles to show the great time you had! It sounds VERY crowded though Kylee looks BEAUTIFUL and it is evident Korissa is having a VERY magical trip, Praise God! THANK YOU for all of the pictures, I know what a LOT of hard work that is!!!

Thank you Judy. We did end up having a Magical day. The magic button did help. Doing a TR is hard work, but really..I'm having a blast doing it. I'm not the best writer(part of my mito and my brain doesn't work well), but love putting our trip in writing. Just medical life does get in the way I'm not sure how people can't sit down and do a TR. I owe it to all the Big Givers that worked so hard making our customs and all the Pixie Dust. Like showing Tim..his GC went to the yummy Mickey Head Ice Cream. We would of never bought these. The GC that we got from the Laxton family that paid for Kylee's BBB. One of the Visa GC that we got from Cheryl(i forgot Disname..I know it's WDW something) that the girls got to do the Pick a Pearl made into beautiful rings), how the backpacks that Lynn made came in handy..ect. Not to mention.. our awesome day at Discovery Cove....though that's our last full day in Florida, so that will be a few before I will get to that.

I think I am exhausted just from reading the rest of your day .. wow, you guys were busy! The pictures really do tell the story- everyone has big smiles (well, except Kylee on the HM! LOL)

Too bad you couldn't stay for Wishes.. I think it started at 10 while you were there? That is late and you did miss the mass exodus out of the park.


yes...Wishes started at 10pm. If you didn't have a spot by 7pm..you were out of luck. Mainstreet was packed. They had the Electrical parade at about 9 and then after that was the memories on the Castle then Wishes. I should of taken a picture what mainstreet looked like. and DW closed at 1am.. 10pm was late for us. When Korissa said she was done...she was done. Poor kid couldn't even walk anymore.




I think we had to bring her to the hospital 7 (?) times over her 5 months on treatment for fevers. They always pumped her full of antibiotics. Reason being is that port is a line directly to the heart. If there is any bacteria in that line, it would get pumped thought the body= NOT GOOD! So she also had to get the port accessed to run full labs as well. Loads of fun in the middle of the night with a tired 1yr old.

She only had the port while on chemo so it was being accessed weekly. She had the port placed on April 2nd and her port was removed on Sept. 13th- one month after her final chemo.

How scary. I'm hoping since we will be only using it while in hospital and monthly flushes...we won't get an infection. This was such a hard decision to make, but I just can't stand seeing her go through 10IVs and 7 blood draws pokes everytime she is inpatient. They need more than 1 IR doctor for our very busy Childrens Hospital.

 

[Mom2mitokids]

Funny you both were told to worry about Fevers. We were never told that. I didn't play with him at all if he was running a fever I brought him in and they treated him. They did jump fast when he got a blood clot in it. They found it on thur and he had it out on Tue.

LOVE LOVE LOVE the smiles on your girls faces as Cinderella is signing their book

I'm really shocked they didn't say anything too you. I just know what to look for since i know what a central line can do. Unfortunately..I have had too many friends losing their kids from line infections. Though they were using it everyday and were very sick with Mito.

wow, what a fun filled day! love all the photo! so happy everyone got to ride and see their favorites!

happy to hear Kylee is back to school and feeling good !

hope you all have a blessed Easter!

Thank you Lisa

I hope you and Megan have a blessed Easter too.

 

[petals]

Luvin the update. The pic of Kylee on HM is funny but I don't blame the kiddie for being scared of it. I won't go on any of those rides so she's braver than me though

The photopass pics are brill. They all look so happy meeting the princesses

 

[miprender]

Loving all the updates. Looks like you were able to meet alot of characters.

And the prince is Prince Eric with Ariel.

Love the BBB pics. I am so glad that you were still able to do it. I think they run behind because we had to wait quite a while when we went.

 

[kaileighbug]

Kaylee makes such a beautiful princess. How wonderful she got to do BBB. Korissa looks like she is having so much fun.

 

[mommy2mrb]

how is everyone feeling today?? hope everyone is well and happy

 

[blessedmom4]

Praying you have a truly BLESSED

I pray everyone is WELL!!!

 

[Tinkergurl20]

I love all of your updates!!! Hope everything is going well!!!

 

[blessedmom4]

Dear Kris, Stopping by to let you know I am thinking of you and wish your sweet family a truly

 

[p00h4me]

To Kris and Crew,

Wishing you all a blessed Easter!

Can't wait for another update!

 

[tinytreasures]

 

[Mom2mitokids]

I love all of your updates!!! Hope everything is going well!!!

Thank you for coming by and reading our TR

Dear Kris, Stopping by to let you know I am thinking of you and wish your sweet family a truly

Thank you Judy

To Kris and Crew,

Wishing you all a blessed Easter!

Can't wait for another update!

Thank you Gail. Update is coming soon.

Thank you Kathleen

 

[Mom2mitokids]

So today was suppose to be our Busch Gardens day, but we just needed a morning we didn't have to wake up so early. We decided to change things around and go to Epcot. I was kind of sad because that meant we did all our Disney days in a roll and no more Disney, but it was for the best. It also turned out great we switched(more on why later...great surprise) We set the alarm clock for 8:30am.

We all were ready and out the door at 9:40 and we all get in the van and head to the Gingerbread house for some Breakfast. Again..yummy food. We ate kind of quickly so we could head for Epcot. This was a new park for us. We didn't come here on Kylee's Wish Trip.

We finally saw this...

We get in the park and saw this...

This thing is huge. We got to go to Epcot during the Flower and Garden festival. So glad we did. Epcot was just so beautiful and the smell was just amazing. We stopped and took a few pictures

Buzz and Woody

Lots so...I have to admit. I had no clue who he was until Kylee and I watched the movie while she was in the hospital. I thought he was kind of mean. Not sure I would of taken his picture

Before we got to far from the Make A Wish VIP Lounge we decided to go check it out. I heard many wonderful thing from TR and they were right

Kyra is Shhhhhing everyone because it was a top secret room. Going up the elevator.

This little computer was so cool. You touch the color and the floor changes color. Each kids had to pick their favorite color and stand on the floor.

Korissa.. Yellow

Kylee..

Kyra...pink

Steven...orange

Ashlee...green

This is the all you can drink soda, coffee, and water. Shhhhh..I took 4 vanilla creamers so I could have some good coffee in the morning. It was too darn hot to have coffee then.

They have this funny mirror that Kylee and Steven had too do.

Kylee practicing for when she goes to Discovery Cove..

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