Collin's MAW Pre-Trip Report

[jenb1023]

You are welcome! No worries about not getting photos! I am just glad the package arrived safely and the kids were excited! Still thinking about Collin and praying he will feel better soon!

 

[wkualum]

SO glad that Collin is home from the hospital and *fingers crossed* that the GI doc figures out that digestion problem.

Awesome Big Give gifts. Those ladies are incredibly talented!!

 

[2specialkids]

Sending prayers that Collin continues to feel better. Hopefully as you get closer to the trip he'll get his strength back. This trip will be a double blessing as it sound like you all could use this break even more.
The kids got some great goodies from the Big Give! Looks like everyone is really enjoying them.
Take it easy and rest up so you all can have a great trip and take lots of pics.

 

[Mickydees]

Collin is improving very little. Met with yet another doctor on Monday (21st). This time a GI. Collin's Neuro was concerned about him not digesting his food. She wanted to rule out anything else besides his disease. The GI feels it is all part of his disease. (When he is in flare up his nerves are affected. Not always in the same area. The last two times it seems to affect the nerves that deal with his stomach and digestion in addition to eyes, legs, back, bladder, bowels, etc.

.) GI is setting up a plan to have temporary feeding tube as needed when he is in flare and cannot eat or drink. Also to start him on pedisure on a daily basis. Collin did make it back to school today (Tuesday) but only for about 2 hours. He seemed to tolerate it pretty good. He felt good up till about 4 pm. After that he feel asleep and as of 8:30 tonight is still sleeping. We'll try for school again tomorrow if he is up to it. He was excited to see another package from "The Big Give" folks. These guys are so awesome. Than you to Glenda Castro (gcast1) for all the pixie dust. This will certainly help the waiting and flight go much quicker. Here a some pics of the kids opening their gifts.

We have revised our park schedule some. Here is what we have planned.
Sat: Arrive at GKTW, orientation, then off to Boardwalk for Dinner at Kouzina
Sun: Sea World
Mon: Epcot (a little nervous about this one as it is Columbus Day)
Tuesday: Spend day at GKTW (hopefully a nap for Collin)MNSSHP with a pirate makeover
Wednesday: DHS and dinner at T-Rex
Thursday: AK and back to GKTW for Christmas Party (hope to meet with two other wish families we've met on the board. Mikaela & Melia)
Friday: US & IOA and then our flight home.

Still keeping our fingers crossed Collin will be up to making his trip. He just goes 100 mph and then he's done for the day. Hopefully he'll build up some stamina between now and then. Maybe the pedia sure will help with that. It's funny from when we first found out about the trip it seemed like it could not get her quick enough. Now it's getting here so fast. Wondering is Collin going to be recovered enough. Thanks for all the prayers and positive thoughts. BTW most all of these posts are being done by Collin's dad. (DW just wanted me to clarify that - not sure why) She has her hands full taking care of Collin so thought I would take on this little project.

 

[billwendy]

Whew, you guys re all really having a time of it!

Will keep praying for his (and your ) strength and endurance!

I think EPCOT is good for holding a big crowd. We have been there on New Years Day before, and while it was busy, we were still able to do all we wanted!! Will you have any type of guest assistance pass for Collin?

 

[wkualum]

BTW most all of these posts are being done by Collin's dad. (DW just wanted me to clarify that - not sure why) She has her hands full taking care of Collin so thought I would take on this little project.

Welcome Collin's dad! Thanks for taking the time to keep us updated. I pray for Collin daily that he has the strength to make the trip. We are looking forward to meeting all of you that Thursday night!

 

[jenb1023]

Woo-hoo for more Big Give stuff and welcome Collin's dad!

Sending good thoughts and prayers for Collin's continued recovery from this flare.

 

[jessica52877]

I've been praying and thinking about Collin. For some reason I never seem to post here though! I hope he has done better since the last update with school and just feeling better overall.

We wives tend to assume the wives do most of this kind of stuff. I love that you have taken on doing the disboard thing and have enjoyed our little chats about the big give and Collin!

 

[Mickydees]

Collin is still recovering slowly from his flare up. He is still having some problems but we are seeing a little improvement. He did get sick Friday night so to be on the safe side we put in a feeding tube through his nose. Did this mainly to get him some pedialite so he would not dehydrate. We did get out some today to do some clothes shopping. He did fairly well but was tired before we got home. While checking the mail when we got home there was yet another "Big Gift" package. This of course perked him up. Wendy - Thank you so much. Something Disney and Jimmie Johnson. To Collin this is the best of both worlds. He was so excited to get another package. When he saw it was #48 Jimmie Johnson that put it over the top to him. Here are some pics.

We are only 2 weeks away - nervously excited. Most of you know what I mean by that. Collin will get another chemo treatment before we leave. Hopefully he'll be feeling better by then. Hope everyone has a great weekend. Thank you to everyone for your continued thoughts and prayers.

 

[billwendy]

Collin is still recovering slowly from his flare up. He is still having some problems but we are seeing a little improvement. He did get sick Friday night so to be on the safe side we put in a feeding tube through his nose. Did this mainly to get him some pedialite so he would not dehydrate. We did get out some today to do some clothes shopping. He did fairly well but was tired before we got home. While checking the mail when we got home there was yet another "Big Gift" package. This of course perked him up. Wendy - Thank you so much. Something Disney and Jimmie Johnson. To Collin this is the best of both worlds. He was so excited to get another package. When he saw it was #48 Jimmie Johnson that put it over the top to him. Here are some pics.

We are only 2 weeks away - nervously excited. Most of you know what I mean by that. Collin will get another chemo treatment before we leave. Hopefully he'll be feeling better by then. Hope everyone has a great weekend. Thank you to everyone for your continued thoughts and prayers.

So excited to see Collin in his outfit!! I'm hoping he continues to recover & will feel good for your trip!! Thx for posting this so quickly!!! I loved seeing his smile!!!!!!

 

[wkualum]

While checking the mail when we got home there was yet another "Big Gift" package. This of course perked him up. Wendy - Thank you so much. Something Disney and Jimmie Johnson. To Collin this is the best of both worlds. He was so excited to get another package. When he saw it was #48 Jimmie Johnson that put it over the top to him. Here are some pics.

Wow, who knew Mickey Mouse liked Jimmie Johnson. How cool is that?

I'm glad Collin is improving. We are too are getting so excited! Even bought us some bling today so we are decked out like the princesses we are while at Disney I posted pics on our PTR. I can't wait for the mailman to visit us

 

[jessica52877]

Love the race car jersey! Collin wears it like a pro.

 

[Matt1026]

I just love his shirt. How cute!!! I know you must be so excited about your upcoming trip!!! It is incredible.

 

[Mickydees]

What can I say about the "Big Give" folks? You guys are simply awesome. Two more packages this week. Here is the latest:

Thank you so much to Rachal (JohnsonsloveDisney) for the autograph books. We all love them so much. The kids will have a ball getting autographs. And Richelle, you really hit it with the Nascar number shirts. The kids are all about their favorite drivers. Thank you so very much. Not only will ALL the "Big Gift" presents we've received make the trip so much more magical, we will also have something to remember it by. Big Give people are so generous. God bless you for everything you do to bring some joy to us and the other wish families.

Collin is still doing about the same. He did make it to school today for about 2 1/2 hours. He felt pretty good till around 2 pm. After that he napped for about 4 hours. He is still getting sick at least once a day. It's beginning to look like this may be where he stays for a while. It's hard to believe our trip is so close. The kids are really excited. Thank each of you for your continued thoughts and prayers.

 

[jessica52877]

Your children are just so precious! I think that every time I look at them! The red hair is beyond beautiful! I am sure you hear that all the time and sure Angellyn gets tired of hearing it! LOL!

What fun big give items! The shirts are so clever and cute!

 

[billwendy]

Those Nascar number shirts are cool!!!

Collin must be so excited that Jimmie is doing so well again this year!!

Im a 24 fan!! all of our drivers are on the Hendricks team!!

 

[Costumesaremylife]

What can I say about the "Big Give" folks? You guys are simply awesome. Two more packages this week. Here is the latest:

Thank you so much to Rachal (JohnsonsloveDisney) for the autograph books. We all love them so much. The kids will have a ball getting autographs. And Richelle, you really hit it with the Nascar number shirts. The kids are all about their favorite drivers. Thank you so very much. Not only will ALL the "Big Gift" presents we've received make the trip so much more magical, we will also have something to remember it by. Big Give people are so generous. God bless you for everything you do to bring some joy to us and the other wish families.




Collin is still doing about the same. He did make it to school today for about 2 1/2 hours. He felt pretty good till around 2 pm. After that he napped for about 4 hours. He is still getting sick at least once a day. It's beginning to look like this may be where he stays for a while. It's hard to believe our trip is so close. The kids are really excited. Thank each of you for your continued thoughts and prayers.

YAYYY I am so glad you got them! Take a picture in Disney for me! I had to make the nascar shirts because my mom is a huge Nascar fan too!



Richelle

 

[Mickydees]

Another great big thank you to the "Big Give" folks. When we were first contacted about the "Big Give" we had no idea just how generous they were going to be. To say the least our family has been overwhelmed by what we have received. Here is the latest:

Holly (vroomvroomlightning), the nascar blankets are wonderful. I had to get them off the kids beds this morning to get pictures. They all three had to have them last night. The timing was great as just this week we are seeing the first little bit of cool nighttime temps. With us being Nascar fans this was a big hit. Thank you so much for your thoughtfulness and the time and effort you put into it.

Got up this morning and realized we are into single digits. Wow. Collin will be going in the hospital Friday afternoon for his monthly chemo treatment. Hopefully he will be recovered from that by next Saturday. He is still doing about the same. Not pushing the school thing right now. After the trip we'll try to get back in the swing of things & hopefully by then this stomach thing he has going on will be settled down. Time to get packing in high gear. Did find out we can ship Collin's pedisure down to GKTW. This will be much better than having to check an extra bag. One less thing to worry about on travel day. Thank you for your continued thoughts and prayers. Looking forward to meeting up with the other wish families while we are there. Won't be long now!

 

[VroomVroomLightning]

I am glad you got them!! My family had theirs out last night sleeping with them too! Even up here in Ohio it is starting to get cold! I hope you all have a wonderful trip and I will continue to keep you and your family in my prayers!

 

[jenb1023]

Love all of the new gifts! Single digits - how exciting!