Seans Magical MAW PTR!

[Sean's momma]

Wow. Just got a phone call two days ago saying my son was approved for a wish trip. You will never guess who he wants to go see... Mickey Mouse! Heard from his wish granters today and they want to get together in the next week or so and meet Sean and talk about the next step in the process and what Sean might wish for. They also want to bring him an ice-breaker toy and I am having such a hard time telling them what to get. They gave me a price range and told me to think about it and they will call me tomorrow with more details.

So since I kinda launched right into what is happening let's introduce you to the cast of characters. (hang tight with me for pics, I will put them up in the next day or two)

Sean, 3.5 years old


Sean has a very rare triplication in his 1st chromosome, chronic ear/sinus infections, an atrial septal defect, is globally developmentally delayed, has a small head size and is most likely immune deficient (testing still in progress on that one). Truth be told you wouldn't know anything was different by just looking at him which is probably the hardest thing for him. He is the happiest kid I know and is so eager to please. He is in love with Mickey Mouse and Donald Duck. Oh and also all the characters from Cars and Finding Nemo.


Me (Sierra) 26 years old

I am a Disney lover and am glad my son is as well. I have been to Disneyland probably 6 times, marched down main street there with my high school marching band and have been to Walt Disney World once. My fondest memory is probably the moment I saw Mickey Mouse's head made of flowers and realizing that it wasn't just a dream. I love the rides, I love the characters, I love it all!!!

Meemaw (Mary) age a secret but young at heart


Grandpa (Yankee/Terry) he has some grey hair thats enough to know lol
So thats the whole cast of characters for now, I'm sure it will change as time goes on.


I am going to have tons of questions I am sure so bear with me and I know you all are very helpful so I'm counting on some good advice!

Due to my step dad's illnesses Sean and I will be moving to Arkansas in July and leaving my home state of Washington. I am excited to begin a new journey and a lil nervous as well. Guess that's to be expected though. I have told MAW about the move and they are willing to start working on his wish here in Seattle and then they will transfer our wish to the Arkansas chapter.



Here are the dates I have in mind for a Disneyworld Trip in order of preference:


November 7th to November 13th, 2011. (this means we would get to spend Sean's birthday at Disneyworld!) Anyone know when the Christmas party decorations start to go up?

October 10th to the 16th - I'm thinking the Halloween party will be going on then?

September 26th to October 2nd - This is my dads birthday week and they are going to try to meet us in Disneyworld.

Is there anyway to have an idea of how crowded it will be?
Also is there some sort of online link to an interactive calculator of what rides he can ride?
What have you found to be the best rides for a nearly 4 year old?
Got any advice for me?

~Sierra

 

[Sean's momma]

Thought I would include some medical background for Sean, it's not complete but it skims through the major parts of his history.

Feel free to ask me questions or leave me comments!







Sean was born in November of 2007 at 37.5 weeks. He was a healthy 6 lbs 8 oz and 18 inches long and all seemed well. Within 24 hours his bilirubin levels shot up and it was determined that he needed to be under the bili-lights. They ran some blood work on him while they had him in the NICU and determined that he had an increased immature white blood cell count and put him on antibiotics. He stayed in the hospital for about 3 days and they never did find out what was causing the immature white blood cell issues but his bilirubin went back down to a normal level.

At about 3 months old we noticed that Sean wasn't sucking on his bottles and got referred to our local Birth to 3 center for feeding issues. At 5 months old Sean hadn't rolled over, had less head control than other children and wasn't holding his head up while on his tummy. We had a developmental assessment done and found out he needed Occupational Therapy. Sean was progressing nicely with occupational therapy for the 6 months, and all though he remained behind the "typically developing" he was achieving his goals. The therapist thought that he might have Cerebral Palsey, went to numerous different doctors, had his first MRI done and no one could find any evidence of CP.

While we were looking into the CP possibility we were also noticing that it seemed like he wasn't hearing well and he was having chronic ear infections. We went to an ENT at Seattle Children's and found out he needed ear tubes placed and eventually would need his tonsils out. His first ear tube surgery was scheduled for the day after his 1st birthday party. I wasn't too concerned though as I had many ear infections and 4 sets of ear tubes in my life. He pulled through that with no problem, in the 2.5 years that have followed he has had his tonsils and adenoids out, and another 2.5 sets of ear tubes placed. He couldn't have another one placed in his left ear at his most recent surgery due to too much scar tissue.

During one of our many hospitalizations (late 2008/early 2009) for unknown infections and horrible ear infections that were not clearing up we were introduced to a resident who used to be an Army doctor. Turns out that he was our guardian angel in disguise. He took a look at Sean's medical chart (which was quite large by this point) and said something else is wrong other than just ear infections and that he would like us to talk with the genetics clinic and neuro-development clinic.

To make a long story short about the genetics visit they determined that Sean has a triplication in his first chromosome from 1q23.1-23.3 and is the only child documented with a triplication in that region. All the care he has received has been based off kiddos with a duplication in a larger region of the first chromosome. We don't know much about how this will affect him in the long run, but as of right now hes doing well.

 

[Therinian]

The official Disney World site lists The Very Merry Christmas Party dates starting on November 8th, so there should be decorations up and around the resorts and parks at that time. That's an excellent time to go!

I do hope you and your family have a wonderful time!

 

[Sean's momma]

Thanks for the info Therinian! I think that his birthday week is gonna be a great time for us to go, it will be cooler and how fun would it be to go to MVMCP (i think thats the right abreviation? on his birthday? Talk about making it a special day!

I know there is something out there that shows what the crowds have been like on certain days/weeks but I can't seem to find the name of it, does anyone know?

 

[Sean's momma]

Oh! I just heard from Sean's MAW granters that they will be coming out on April 28th at 6pm to meet Sean! Now I just have to get the paperwork for his dad to sign so we can go. Sean is wandering around the house right now screaming MICKEY MOUSE! at the top of his lungs because I put a disney movie on for him. Oh to be a lil kid again...

 

[Sean's momma]

Well all is quiet here in WA tonight.. that is except the neighbors upstairs. Good thing Sean has learned to be a heavy sleeper. So I was told that I have to help Sean with a secondary wish. Does anyone know if MAW would accept "I want a backyard playgound" as a wish? It's awfully quiet on here... hope there are some lurkers out there or something, but if not at least I will have written everything for Sean's scrapbook that I'm going to make when things quiet down a bit... which at this rate feels like never! lol!

 

[blessedmom4]

to the MAW experience (I see you have been here a while, so you know your way around the DIS).

I wanted to suggest you post questions over on the WISH TRIPPERS THREAD.

You should get answers to all of your questions from LOTS of people there

I hope you post more about Sean here on this PTR, along with a bigger photo, we would LOVE to get to know your family!!

Yes, a Backyard Playset is a great second Wish...however, I am fairly certain he will get his first Wish choice.

 

[tinytreasures]

Yes they do playground too

 

[Sean's momma]

Sean's lying around enjoying watching scooby doo on his great grammas iphone. Taken yesterday. Please excuse the quality, i don't have a digital camera right now lol.

This is from about a month ago, it was taken by the Seattle Monorail after we saw the Star Wars Exhibit at the Pacific Science Center. He bought the book out of a vending machine, i have never seen a vending machine sell books!

This one seems kinda self explanatory

 

[Sean's momma]

So tomorrow is the big day! Sean's granters will be here at 6pm tomorrow and he is so excited! I am making some iced tea and some cupcakes to have on hand to celebrate and working on picking up the house. I know they are bringing forms for me to sign, but I wonder what else will be happening. Hm... Guess I am excited too!

 

[tinytreasures]

So tomorrow is the big day! Sean's granters will be here at 6pm tomorrow and he is so excited! I am making some iced tea and some cupcakes to have on hand to celebrate and working on picking up the house. I know they are bringing forms for me to sign, but I wonder what else will be happening. Hm... Guess I am excited too!

Yah I am so excited for you that Wish Granters are coming.

 

[Sean's momma]

Well one of the wish granters came down with the horrible cold that seems to be going around the seattle area so we had to reschedule. New date is May 12th at 6pm.

As excited as I was I am very glad that they didn't bring a cold around Sean.

Poor baby isn't feeling good anyways with yet another ear infection. He has been on daily augmentin for nearly 2 months now. I'm starting to really worry that we are going to make augmentin unusable for him in the future but the pediatrician recommended holding out until Sean's ear doctor appointment in early May. Anyone else have a kiddo with recurring ear infections? What worked for you?

 

[tinytreasures]

Well one of the wish granters came down with the horrible cold that seems to be going around the seattle area so we had to reschedule. New date is May 12th at 6pm.

As excited as I was I am very glad that they didn't bring a cold around Sean.

Poor baby isn't feeling good anyways with yet another ear infection. He has been on daily augmentin for nearly 2 months now. I'm starting to really worry that we are going to make augmentin unusable for him in the future but the pediatrician recommended holding out until Sean's ear doctor appointment in early May. Anyone else have a kiddo with recurring ear infections? What worked for you?

Bummer they had to change dates but I agree you don't need the sickies.
My son was on ABX all school yr to help with infections. Hopefully the ENT will help you with a better answer so he can get off them.

 

[Sean's momma]

I sure am hoping so. Every time they culture his poor ears it always grows the same staph, however, no matter what antibiotics hes on we never seem to get more than 2 weeks of no drainage. I got fed up with Sean's old ENT prescribing the same exact antibiotics and ear drops with no improvement so the next time we go he will be seeing a new ENT. Hopefully a new face will bring new ideas.:

I see your MAW trip is coming up fast! I bet you are all very excited! I hope to see some pics, I love reading the MAW TR's!

 

[Sean's momma]

Well we had a long weekend given Sean got the stomach flu. It's always scary when he gets sick. Thankfully he got better on his own with just some pedialyte, tylenol and a few extra vitamins and we got to skip the hospital trip.

I am in the process of packing to move to my moms in less than 2 weeks to start saving money before we move to Arkansas. Sean's wish granters are coming on the 12th, just 2 days before the big move. Hope we don't have to get new wish granters, but I have a funny feeling we may have to considering we are moving 45 minutes away. That seems a long ways to expect someone to drive.

I talked to Sean's wish granters and they are trying to coordinate with the MAW chapter in Arkansas to make sure that there are no issues with the switch come July. They did mention it is 99% likely that he will get to go for his birthday week since we are planning it out for November. I am hoping to save some extra money between now and then but it sure is hard given that our only income is Sean's SSI. With all of his appointments and trying to make sure he gets to two schools, and how chronically ill he gets it is close to impossible for me to work. If anyone has any good ideas as to how to save / how much to save they will be greatly appreciated!

I hope everyone out there had a great weekend!

 

[Sean's momma]

So we have one hour until Sean's meeting with the MAW granters! Unfortunately one of them was sick with a fever and can't make it so we are meeting at the local community center instead. Thats fine by me though! I am just SO excited to meet them!

I had made a wish list for Sean for an ice breaker toy and when the wish granter called yesterday to confirm the meet he said he couldn't find it on the Toys R Us site. Guess they had a glitch. However I was able to tell him which toy Sean was most interested in and low and behold they had it in!! You will all have to wait until I get home to post pics of it though! Gotta have a bit of suspense for you! Well I am off to change his diaper and brush his hair and such so he looks nice for the pics. Cuz you know it's so important that a boy with short hair has his hair brushed... guess I'm a lil neurotic today!

 

[xanphylus]

Hiya! I just saw you post on the other thread and tracked you down! Your kiddo looks super cute and like he would get along very well with my DS2. I love the book out of a vending machine! Have never seen that. Hope to read more- subing to your thread.

Never been to the Christmas party, but we did the Halloween one it was really cool. No idea on the how much to save. I would just save as much as possible and if you don't need it when you get there- all the better! You will get something from MAW to help with costs while there, but from what I have read- it can vary greatly. But if you eat at GKTW a lot, it will save more money for those neat toys you know he will want while you are there.

 

[Sean's momma]

Oops. fell off the PTR band wagon there for a minute. Sean got a Thomas the Train toy from his Wish granters. Its the Rock Quarry Run. I would post a pic of him with it but sadly my phone is giving up on me and I don't have the ability to get a new one yet. Trying to track down my moms really old digital camera to at least get a basic pic of him with it. If worst comes to worst I will use a FILM camera. Can't believe I still have one of those. Can you even buy film anymore? hm... gonna have to check into that.

So an update from us. We have moved in with my mom about 40 minutes away from our old apartment. It has been stressful but we got Sean's school transferred and things went off almost without a hitch. Too bad I got the flu for the 4th time! I'm feeling better now though. Sean has been approved for a personal care giver for 75 hours a month so that I can get a bit of help and/or a break. She will start tomorrow!

Sean is doing great in school and picking up more words everyday! I am praying that when we move to Arkansas tornado season will be over. My stepsister and dad have not had to go into the safe room yet but its been very close to coming to that. They have lost many trees on the property. They live about 175 miles from where the biggest tornados have hit. I'm hoping they dont have to get my dad into a safe room as he can't walk by himself.

 

[Sean's momma]

So Sean's caregiver is so freakin awesome! Her name is Maleah and she is so good with Sean. She takes him on walks and lets him run to his hearts content in the backyard. She gets down on the floor and plays with him and best of all I get a short break!

I am so tired of packing for this move. Just a bit over a month to go before we head out. If anyone has any tips on keeping a 3 year old entertained on a 2100+ mile trip I would love to hear them. (Keep in mind he is developmentally delayed so think of more like a 2 or 2.5 year old)

 

[xanphylus]

So Sean's caregiver is so freakin awesome! Her name is Maleah and she is so good with Sean. She takes him on walks and lets him run to his hearts content in the backyard. She gets down on the floor and plays with him and best of all I get a short break!

I am so tired of packing for this move. Just a bit over a month to go before we head out. If anyone has any tips on keeping a 3 year old entertained on a 2100+ mile trip I would love to hear them. (Keep in mind he is developmentally delayed so think of more like a 2 or 2.5 year old)

I have a few suggestions for your trip. For our 2.5 year old we usually wrap little dollar store presents up in pretty wrapping paper and give him one every hour or so. That way, he has something to look forward to and a new toy or coloring book or board book or what not every hour. Sometimes it was just a pack of special fruit snacks or other thing he really likes. Also, take lots of breaks at rest stops for him to run around if possible. We also got a few kids cds to play in the car so he wasn't just listening to our music the whole time. Anyway, hope that helps a little.