Collin's MAW Pre-Trip Report

[arilvdc]

Wow, Collin sounds like such a great kid, I'm glad he's getting this opportunity. I love everyone's red hair!

 

[bettyann29]

Im in for your ptr!! sounds like you guys are gonna have a blast..

Your kids are so cute.. they all look alike.. and Collin looks like a sweet little boy..

I think you are going during a great time.. the weather will definitely be better than in the middle of the summer when it is brutally hot..

looking forward to hearing more!

 

[Mickydees]

Just a quick note to let everyone know Collin is on his way to the hospital to get his monthly chemo treatment. His last blood count showed the counts are finally getting close to where they need to be. Hoping he will only be in overnight. Also that he want be sick with it either. Nothing really new on our trip planning. Working on getting all the kids ready for school. We should know more of our trip details by next week. Everyone is really excited and can't wait.

 

[MomTo4+more]

Just wanted to say I'm hoping for an easy short stay for this round of chemo. Keep dreaming of Disney while you are there!

 

[Mickydees]

Collin did fine with his chemo treatment this week. Only got sick just a little. We spent some time at his school today. Met with his teacher who happens to be a big nascar fan. Gives Collin and her something in common. Nothing new on our trip plans. Hopefully by Monday of next week we'll have our flight times and our other reservations. Hope everyone is having a great week and have and have a great weekend.

 

[kimmylaj]

beautiful, beautiful children, cant wait to hear more about your trip

 

[2specialkids]

He's absolutely adorable!! I think all of our special kids deserve this (though I was also hesitant about doing it). It's nice to have some "normal" time for them, just let them be kids. Have a great trip...I look forward to hearing all about it!

 

[Mickydees]

I apologize for not updating sooner. We are into our 3rd week of school. Things are starting to settle down into a routine now. Collin is adjusting pretty well. He is only going 1/2 days for now. Only went 2 days last week as He was sick with a cold Monday, had Dr. appointment and some tests Wednesday, and was worn out Thursday from Wednesday's trip. Hopefully he'll get a full 5 days in this week. Here are a couple of pictures from his first day:

As far as trip planning goes we have our flight times. We will be arriving in fairly early in the day so we plan to go to Disney Boardwalk that afternoon (after check in and orientation at GKTW). We have reservations at Kouzina. We (especially Collin) are big Food Network fans so it will be special to eat at Iron Chef Cat Cora's resturant. Collin will be doing the Pirate Makeover. We are still debating MNSCHP. We had pretty well decided to go but found out that will be our expense. We may decide to use our money for something else as Collin is not a big Halloweener. Nevertheless we are all excited about our trip. Can't believe how close it is. I want to give a big thank you to the Big Give for including Collin. This will make our trip even more special. Collin is holding his own healthwise right now. No flare ups Keeping our fingers crossed he doesn't pick up a bug at school that can turn into a flare up. Will update again as we get closer.

 

[wkualum]

I apologize for not updating sooner. We are into our 3rd week of school. Things are starting to settle down into a routine now. Collin is adjusting pretty well. He is only going 1/2 days for now. Only went 2 days last week as He was sick with a cold Monday, had Dr. appointment and some tests Wednesday, and was worn out Thursday from Wednesday's trip. Hopefully he'll get a full 5 days in this week. Here are a couple of pictures from his first day:

As far as trip planning goes we have our flight times. We will be arriving in fairly early in the day so we plan to go to Disney Boardwalk that afternoon (after check in and orientation at GKTW). We have reservations at Kouzina. We (especially Collin) are big Food Network fans so it will be special to eat at Iron Chef Cat Cora's resturant. Collin will be doing the Pirate Makeover. We are still debating MNSCHP. We had pretty well decided to go but found out that will be our expense. We may decide to use our money for something else as Collin is not a big Halloweener. Nevertheless we are all excited about our trip. Can't believe how close it is. I want to give a big thank you to the Big Give for including Collin. This will make our trip even more special. Collin is holding his own healthwise right now. No flare ups Keeping our fingers crossed he doesn't pick up a bug at school that can turn into a flare up. Will update again as we get closer.

He looks great and excited for his first days of school! Here is the magic wand to keep the creepy sickie bugs away from your home!!

We are getting close to our trip huh? Congrats on Big Give and getting a ressie at Kouzina. I love Iron Chef America and Food Network too! So I'm a BIT jealous

 

[billwendy]

Hi!!

So nice to meet you and your family!! Glad you are going to get to do a MAW trip!! What FUN!!!

The MNSSHP is really fun - and isnt really scarey. We went on a week night last year, and although it was busy, we walked on the rides with no lines and just had a fun time. We got TONS of candy - lol - and the park was decorated for the event. BUT, if Collin wears out, it may not be worth it for you as the later you stay, the less crowded and more fun it gets.

Looks like your family is into NASCAR!!! Do you guys like it too, or just the kids? We are Gordon fans at our house....how about you?

 

[Mickydees]

Thanks for everyone stopping by and keeping up with us. Yes our family is into NASCAR. Collin is a BIG Jimmie Johnson fan. He actually got to meet him back in April. Collin had his monthly chemo treatment Friday. Today (Sunday) he is not feeling very good. Not sure if it is from the treatment and just getting started with school or if he is headed for a flare. He is complaining of leg pain and is tired quiet a bit. Hoping he can get to feeling better before our trip. As far as trip planning goes we are still debating the MNSSHP question. If we were there now he would not be able to hold out for something that late in the day. There is also the additional cost issue to be considered. We'll decide closer to our trip. Please continue to keep Collin in your thoughts and prayers that he is not headed for a flare up. Hope everyone has a wonderful Labor Day.

 

[Mickydees]

Well unfortunately Collin is in a flare. He has been feeling worse since the weekend. Since Monday afternoon all he wanted to do is sleep. He has blured vision, trouble walking, pain in his legs, and for the first time lack of sensation in his left hand. Saw his neuro today and her comment was he looks bad. It was decided to begin a round of IV steriods followed by an oral taper. Due to all the sickies at our hospital his doc decided to do home IV. However if he does not improve in a couple of days he will have to be admitted. Then a dose of IVIG in a week or so. Hopefully this will bring him out of the flare and he will be feeling much better by the time our trip gets here. There is a more detailed update on his collinsquest website under the journal button. As you can imagine not a lot of planning has been going on the last few days. We did get a reservation for T-Rex on Wednesday of our trip. That's about all for now. Just praying Collin has a quick recovery and gets to feeling better soon. It's really tough to watch him just lying on the couch all day and not being able to do anything to help him. I will update in a few days. Till then thanks in advance for all the prayers and positive thoughts.

 

[billwendy]

Hi!

Sure will be praying for a quick recovery for Collin. Glad you got Trex ressies too!

Wendy

 

[wkualum]

Well unfortunately Collin is in a flare. He has been feeling worse since the weekend. Since Monday afternoon all he wanted to do is sleep. He has blured vision, trouble walking, pain in his legs, and for the first time lack of sensation in his left hand. Saw his neuro today and her comment was he looks bad. It was decided to begin a round of IV steriods followed by an oral taper. Due to all the sickies at our hospital his doc decided to do home IV. However if he does not improve in a couple of days he will have to be admitted. Then a dose of IVIG in a week or so. Hopefully this will bring him out of the flare and he will be feeling much better by the time our trip gets here. There is a more detailed update on his collinsquest website under the journal button. As you can imagine not a lot of planning has been going on the last few days. We did get a reservation for T-Rex on Wednesday of our trip. That's about all for now. Just praying Collin has a quick recovery and gets to feeling better soon. It's really tough to watch him just lying on the couch all day and not being able to do anything to help him. I will update in a few days. Till then thanks in advance for all the prayers and positive thoughts.

Oh man. Mikaela and I hope Collin feels much better for his trip! We need him to be happy happy happy for when we meet you guys! He is in our prayers and God speed to him.

 

[Mickydees]

Thanks for your thoughts and continued prayers. Just trying to keep him from dehydrating. Hard for him to keep anything down. Tonight his vision has gone. Praying the steriods will bring that back in a few days. It has come back after previous attacks, so we'll just have to wait and see. Thanks again.

 

[Corrine 1973]

Our prayers for Collin and a speedy recovery.

 

[2specialkids]

Sending prayers and hugs for Collin. We're hoping he's doing better soon so he's got lots of strength and energy for his trip.

 

[3princesses+aprince]

Well, I just read through your PTR and your Collin is so precious. I am so sorry he is sick right now. I will be thinking about him and hoping he gets better in time for his trip. Losing his vision must be so scary for him. Some Pixie Dust for Collin!!

 

[wkualum]

Thanks for your thoughts and continued prayers. Just trying to keep him from dehydrating. Hard for him to keep anything down. Tonight his vision has gone. Praying the steriods will bring that back in a few days. It has come back after previous attacks, so we'll just have to wait and see. Thanks again.

Oh gosh. to you guys. Still praying for a speedy recovery for Collin. He's got a month to feel better and store up some energy for your trip.

 

[jenb1023]

I hope Collin is feeling a little better today and continues to recover until he is 100% for your trip!

As for MNSSHP, we plan to hit the parks in the AM and then head back to the hotel for some rest/down time before going to the party. I also know they have a WISH lounge where you can rest for awhile if you don't want to leave the parks and go back to GKTW.

Looking forward to reading more about your plans once Collin is feeling better!