Seans Magical MAW PTR!

[Sean's momma]

Well guys, that was the longest trip of my life. We left WA for AR on Sat July 16. (after a good 3 weeks of nonstop constant packing that left no time for the disboards ). We were set to arrive on Wednesday July 20th. Sean was doing great on the car ride even when it was hot and sticky and we had no air conditioning in the car. The first 2 days of the trip were uneventful (famous last words). The 3rd day (Monday) we decided to make a short day so Sean could have a break and swim and such. We stopped in Sheridan WY and when my mom came back out from registering us for a room she went to start the pickup and low and behold...nothing, not a sound coming out from under the hood at all. Turns out the starter went out.
We had the truck towed to firestone and they had to wait 2 days for the starter to get there from Billings MT so we were gonna get an extended break halfway through the move. Wednesday rolls around and they get the starter in and we are packing up the hotel room and call them to make sure everything is going well. Firestone tells us that the starter is remaining in a continuous on cycle, meaning that it was trying to start the car all the time even when the car was already started. We had to wait another day for a new ignition switch. So we did some laundry and watched some tv and went swimming :.
Sean did great on the trip overall and is adjusting well to Arkansas. We were adopted by a puppy last night and he is in love k: We spoke with the new MAW chapter and we were told that we need to get a birth certificate for Sean. I don't know how I am going to manage this if Social Security Checks do not get mailed next month, we are on a wait and see basis as to money. We will make it work though!
Also, we are in the process of getting Medicaid for Sean and hes getting a summer cold. We wont get medicaid until at least 8/2. I hope he gets over this cold before it starts causing issues with his ears and we end up in the hospital with no insurance
I will update this with some pics of the trip in the next day or two, gotta get the pics off my phone.
Hope everyone had a great time for the 4th of July, even if it is a little late lol!

 

[Sean's momma]

So it's been awhile since I have been on here. Got a job and got sean enrolled in school only to decide that the first school wasnt working out and transfered him to a school closer to home. Now i'm in bed with my bursitis acting up, threw my back out and have a horrible UTI (sorry if TMI lol)

So we have dates now!!!!!
January 21st to the 27th we will be in Disney World! YAY!!!

My dad is going to pay his way to come with us and it's probably going to be his last trip due to failing health. This is going to be one special trip!

Tomorrow we drive to Little Rock to Children's Hospital to get Sean's ears checked out and his heart. He has been having some issues with getting really sweaty and pale lately so I want to be sure everything is going ok with the Atrial Septal Defect. This will be my first trip to Little Rock. My mom is going to drive us because I am in too much pain to sit up for a 2 hour car ride plus all day at the hospital. I'm so excited to see a new place though!

I am trying to plan an nonliterary for the trip to Disney World but I have no idea where to start. I know we want to spend a whole day at Magic Kingdom and I'm sure sean would like to go see the animals. Other than that we want do a character lunch/brunch and a trip to 50's Primetime for my dad. Anyone have any ideas on what we shouldn't miss when we are there?

Hope everything is going well with everyone else!

 

[Sean's momma]

Well we made it to Sean's cardiology and ENT appointments at Arkansas Childrens Hospital. That was one heck of a drive for sure! First up was Sean's ENT appointment. Sean is an old pro at having his ears looked at and I am fast becoming a pro at knowing whats an ear infection and what isnt without having an otoscope! Sean has yet another ear infection right now, they gave us some meds for it that he hates and we scheduled another surgery for ear tubes for February 6th. I am not looking forward to another surgery, this makes for Sean's 4th set of tubes and last time they couldn't put a tube in his right ear (the one that is currently infected) because there is too much scar tissue. Hopefully all goes well. The ENT seems very nice though.

Next appointment was cardiology. Sean has a small atrial septal defect and we were doing some follow up on it to see if it is closing like the doctors hoped it would. Also, we were a little concerned because Sean will randomly get sweaty and pale which from what our previous cardiologist told us could be warning signs. So while we were there sean had an EKG and an echo done. He hated the echo cuz the ultrasound tech was standing between him and the tv! Met with the doctor afterwards and they said while they see 2 holes now, they are very very small and considered "normal" so we don't have to follow up any more with cardiology unless we see a marked change in his appearance!

Sean has a cold right now and keeps getting bloody noses and I threw my back out and my hip is bothering me but we are all slowly on the mend here I do believe!

Sean's wish coordinator called us wednesday we should have flight info by monday! I am so excited!! Now we are working on potty training Sean because, " You have to use the big boy potty to go to disney world" so far it seems to be motivating him but we are still having issues. As long as he is trying im happy though.

Well I am about to enter a turkey induced coma so I will update as soon as I have more info!

 

[Moodyzblu]

Joining in .. can't wait to hear more !

 

[mom2maggie]

Less than 2 months until your trip!

 

[Sean's momma]

Well we officially have our flight itenerary! We got my dad on the same flights and he and my mom get to sit together. Sean is watching tons of Disney movies since it seems they are constantly on tv lately and he is loving them. We have been watching videos on youtube of the rides and he seems most excited for Winnie the Pooh or as he calls him, Missin duh Pooh.

We have a tentative schedule for while we are there, suggestions are always welcome!

Saturday Jan 21
~~Arrive GKTW
~~attend orientation
Sunday Jan 22
~~Universal/IoA
Monday Jan 23
~~Magic Kingdom
~~Chef Mickeys Reservations at 7:35 am
Tuesday Jan 24
~~Hollywood Studios
~~50s primetime at 1:40pm
Wed Jan 25
~~AK and either Epcot or MK
Thursday Jan 26
~~SeaWorld
~~Christmas at GKTW
Friday Jan 27
~~Check out GKTW
~~Fly home

We don't get in to Orlando until 5:25 pm, so I am hoping that we will get to GKTW in time for the evening orientation. Also, we are debating on if Chef Mickeys is really worth it, I know you get a lot of character interaction but I'm just not sure if I want to spend that much money on one meal when I'm sure they are many other cool things I would rather buy and when GKTW has breakfast for free. Any ideas on what we should do?

 

[Moodyzblu]

Another "heart" mom here ! (heart issues, among other things) Glad you got your dates.

I've never done Chef Mickey's but I've heard great things about it. I know I'd love to do it sometime, but you're right .. it's expensive for a meal.

 

[Sean's momma]

This has been a good week here in Arkansas! We got to see a tiny bit of "snow" (back in washington we would have called it slush lol), we purchased my dads plane tickets and I am working on packing! Hmm... might be a tiny bit early to pack my shampoo and toothbrush!

Ok, now that I am back from putting my toothbrush back in the bathroom let's see what else I can update you with...

Ah yes we have decided that we are switching our Universal day with our AK/HS day. Kali River Rapids is closing on 1/23 and since I was really looking forward to it we have changed so that we can ride it on 1/22. Now just to hope its not too cold to enjoy it!

Also, I have decided to cancel Chef Mickey's, I just can't justify spending that much money for 4 of us to eat. Plus I am a little nervous since I will not have much of my own money saved up and to me souvenirs for Sean are much more important than some food. Yes, I know the characters are there too, but still can't justify the money output.

I am working on trying to figure out how to make sean a pair of pants or shorts for the trip. I bought some really cool Buzz Lightyear cotton fabric at walmart for $3 for 1.5 yards and I bought 2 packages. I have the knowledge of how to cut the pieces out for the pants and sew them together but no real knowledge on how to put elastic in. If anyone has a simple method for that i would love to hear it!

Also, I now have all my Christmas shopping done, and only about 3 more gifts to wrap! This is the most on top of it I have been in years!

How is everyone else doing this holiday season? Can you believe there is only 12 more days until Christmas? Crazy. This year has gone by so fast!

Well seeing as how it is 12:14 in the morning and Sean has to be up for school in less than 6 hours, I better be heading to bed! Hope everyone has a great day!

 

[Moodyzblu]

No snow here (thank goodness !) I hate snow ! But it's gotten real cold. I can handle the cold though as long as there is NO snow !

I'm not sure if I'll make any dinner reservations .. you're right about it being very expensive. We're happy just eating counter service meals.

I'm sure you'll meet plenty of characters in the parks anyway !

Thanks for updating !

 

[Sean's momma]

I would do anything to have a white christmas but the neighbors might look at my a little funny if i start spreading flour on the front lawn. And what happens if it rains with the flour on the front lawn... Oh well.

Now that we have bought my dad's ticket we aren't sure if he will be going with us. He has a consultation with a surgeon on Monday morning and may be having surgery before we leave and there is a 1.5 to 2 month recovery time on it. Thankfully we bought trip insurance but this would have been his last trip to Disneyworld since he can not travel long distances anymore.

Sean had his 4 year check up today, got a prescription for antibiotics and ear drops in case we need them on our trip. He is 41.25 inches, which puts him past the cutoff for the 40 inch rides!! His ears are infected again and his foliculitis is flaring and they determined he has excema on his face and its flared up pretty badly. I have no idea what to do about it, I have tried every lotion on the market, the doctor suggested vasoline but that seems like it wouldnt sink into his skin very well. Any one have any ideas what to do about excema?

 

[Momto15]

Have you tried Eucerin? (The kind in the TUB, not the one with the pump?)
Its really great stuff for our little guy with big skin issues.
________________________
Blessings,
Sarah
(Mom to 15)
Princess Angelinas MAW Pre-Trip Report

 

[Sean's momma]

Thanks for the eucerin tip, it seems to be working pretty well, still some redness and chapped looking but part of that is probably the winter weather and the dry air in the house!

Haven't been on here near as much as I wanted to lately. My dad went to the hospital with chest pains on 12/30, was transfered from the local hospital to a bigger one thats about 45 mins away. They aren't sure what caused the chest pains but they did find some fluid build up around his heart. They kept him overnight for observation and then his diverticulitis started acting up horribly and they decided to do a surgery to remove part of his colon or intestine, im still not quite sure which. The surgery was scheduled for 1/3 and he was to stay in the hospital for observation until the surgery. on 1/3 they kept pushing back his surgery and eventually it ended up being done on 1/4. Surgery went well but recovery is not going as well as they had hoped. he is having a hard time keeping his blood pressure up, his blood sugars are out of control (but that is frequent for him), he isn't using his diaphragm to breathe but instead is breathing with his abdominal muscles and now they are putting him on dialysis because his kidneys are shutting down. They are hoping the dialysis is only going to be 3-4 times and that his kidneys will restart themselves. I'm not sure I think that will be the case. My mom called the hospital last night and if my dad is released from the hospital while we are on sean's trip they will release him to a rehab facility or a nursing home with rehab capabilities.

It has been a little hard to keep our spirits up for Sean's trip given all of my dad's health issues recently, but we are doing our best. We will meet with the wish granters on Wednesday and get our tickets, debit card for the expense check and have breakfast at Cracker Barrel. Sean can't wait for Disney world and we have been watching ride videos on youtube to see which ones he is most interested in. Lately he has been wanting to ride Splash Mountain the most!

Packing is going well! Seems like laundry will never end in preparation though lol!

Well we are going to be heading to the hospital here shortly to visit my dad so I better get off here! Have a good day everyone!

 

[Moodyzblu]

Sorry to hear about your dad .. I hope things take a turn for the better soon. I can imagine it must be putting a damper on your Disney excitement.

It's SO close now ! The last few days are always the longest .. yet shortest days. You're going to have a wonderful trip !

 

[nesser1981]

Joining in.

Sending prayers for your dad.

 

[Sean's momma]

3 days to go!!! :

We met with Sean's wish granters today at Cracker Barrel and boy did they shower him with love and gifts! We were given our itinerary and a large rolling suitcase and a small rolling suitcase that had a smaller bag in it and a toiletry bag. Sean also got 3 Mickey Mouse coloring/sticker books, a Cars book with a little tool set on it, a gorgeous frame with Mickey and Friends stickers and his name on it, a 5 pack of Hot Wheels, a teddy bear, and a special Make A Wish Hot Wheels car. We had a great breakfast but Sean was soo excited that he could barely sit still long enough to eat more than a few bites of food. The wish granters were amazed that Sean chose to eat oatmeal when he had a choice of pancakes and french toast and so many other things. (Frankly I'm a bit amazed myself!)

We went to see my dad afterwards and Sean showed him the gifts he got, we are trying our best to include my dad in every way possible since he is not able to go with us anymore.

This evening as I was trying to plan what should go in what bag, I opened up the new suitcases and low and behold there was another wrapped gift in the big suitcase and a cheer with me tracy doll in the little one... :

We have to meet another wish granter at the airport to get our expense check debit card and be "sent off" so we are going to try and give them back the doll. Don't get me wrong, I don't mind if Sean plays with dolls, but it seems like there will be some little girl who will want it more than Sean. If the wish granter says they do not want it back I will either see if there is one little girl in the airport who needs some cheering up or see if I can give it to someone at GKTW. Unless someone else has a better idea? lol

Well I am off to bed so I can be up bright and early to get Sean on the school bus and then get to working on laundry for packing! Sleep is so not a necessity right now!

 

[sweetmarieT]

I've just read through your PTR and am all caught up. I'm so sorry to hear about your dad. Make sure you take lots of pictures everywhere you go so he can share the experiance through your eyes and pictures.

We arrive at GKTW Feb. 3rd so its to bad that we are going to just miss each other. I can't wait for you post more pictures, Sean sure is a cutie patottie. I hope you have the most amazing time creating memories that last a lifetime. I will be following your story and adding your family to our prayers.

 

[nesser1981]

Wow! So Close! I can't wait to read all about it.

 

[Moodyzblu]

Wow .. lot's of cool gifts !!

I can't even imagine how excited you all must be right now !!

 

[xanphylus]

Have a great trip!!!!! Hope all his sweet wishes come true!