~~Buglet's Dreams can come true~~ Dream Factory Wish Pre-Trip Report

[OhanaDreams]

"This is my family. I found it, all on my own. Is little, and broken, but still good. Yeah, still good"

We are a family of 3. Buglet is our miracle, and officially a Dream Factory wish kid. We got the call last night that he was accepted and approved by his physician. He loves Disney World so his wish was easy to make.

Our trip will be in February as Buglet suffers from autonomic dysfunction and can not tolerate heat. This is one of the after effects of an Acquired Brain Injury. Buglet has suffered from many medical and developmental issues that seemed to baffle the experts. When the cyst was finally found in April 2012 we had our answer. Since that time we have been trying to find the right set of physicians and treatments to help him. Right now we are waiting for appointments at the Minnesota Mayo clinic in January. We will be there for a week of testing and to see if a shunt can be put in to relieve some pressure on his brain.

Last May exploratory surgery was done and Buglet picked up a nosocomial infection. A week after discharge he was back with meningitis. He ended up being hospitalized 3 times because of the nosocomial infection. We are nervous about future surgeries.

We continue this journey with the hope of making new friends to add to our little family. More to add soon...

[

 

[NEmel]

Welcome!!! He is sure a cutie and so sorry for what your family has had to go through. So excited to hear more about his wish!

 

[Lilfoot93]

I can't wait to hear all about your planning!

Jackie

 

[angel's momma]

I love your quote & avatar, and the name Buglet

So sorry that Buglet, and your family, has been through so much. He's adorable, and I'm so glad that he is getting his wish.

Praying you will find the right Drs. & treatment, and for the appointments at Mayo.

 

[OhanaDreams]

Angel's momma, Lilfoot93, and NEmelThank you so much for replying on the thread. I need to move out of the shadows and be a better poster.

Yesterday we spent the day in the opthamology clinic at our local Children's Hospital. On Tuesday evening we had a mishap while reading a book. Buglet's depth perception is not great. We managed to get an abrasion on his cornea by turning the page of a book. (Elf on the shelf)

Pain pain pain. He screamed and cried. It was awful.

It was also all my fault because we were laying down on the floor reading. Normally we sit up and he is on my lap. I can prompt him to move back if he starts to get visual disturbances and moves too close. Sigh... I know how painful they are, but they also heal fast. By the next morning he was still tearing and incredibly light sensitive. So off to the opthamologist we went.

After 3 hrs at the doctor we got the good news that no infection set in and he could return to school the next day. I have warned his teachers to encourage him to be seated upright and an arms length away from books before turning pages. I would have seen the page coming and moved away, but he doesn't have that...Guilt guilt.

 

[OhanaDreams]

Planning has begun. I decided to keep track of everything on this thread. Maybe it will help someone else out too.

Last night I went thru the DisneyWorld site looking at all the new locations and attractions. Since we won't have a meal plan we decided to only do quick service meals so no reservations are required. Deciding on where to go and when is the next step.

Today I found an amazing site that plots out traffic flow. Crowd Calendar Loving this site!

The plan now is to start with Universal on Wednesday, Thursday = Epcot, Friday= Magic Kingdom & Hollywood Studios, Saturday = Magic Kingdom, Sunday = Sea World and Universal. The only down side to this calendar is the fact it doesn't include Sea World. So exciting!!!

Give Kids the world also has events on different days. So fun. The entertainment schedule is another thing to be added into the mix. Buglet has limited endurance and I want him to get the most out of his time he is awake and alert. Here is our list of must dos at the village.

Tuesday
7:30pm - 8:30pm Mayor Clayton’s Birthday Party
On the Avenue of Angels House of Hearts Stage!


Thursday
8:00am - 10:30am
Disney Character Photos
In Julie’s Safari Theatre and the Castle of Miracles


6:30pm - 8:30pm
Winter Wonderland Festivities
Along the Avenue! Santa Claus, carriage rides and even a parade!

Friday
8:30 - 9:15am
Universal Character Photos
In the Castle of Miracles!

6:30pm-7:30pm
Ms. Merry’s Enchanted Tea Party
In the Castle of Miracles

7:30pm - 8:30pm
Pirates and Princesses Party
With Shamu at the Serendipity Stage!

Sunday

7:30pm - 8:30pm The World’s Largest Candy Land Party
At Matthew’s Boundless Playground!

Monday
8:00am - 8:30am

Disney Character Photos
In Julie’s Safari Theatre and the Castle of Miracles

More planning to come and more updates on Buglet's story.

 

[OhanaDreams]

Buglet is sick in bed today and we are taking shifts staying with him. Lots of time to plan today!

I am worried about the drive and the length of time to walk to and from parking. Today I am going to search the forums to find out how far it is to walk or ride from each of the handicap accessible areas.

In the meantime I grabbed this link and post about Sea World. We are going to use these exact plans by Maroo.

"If I was doing the Wish Trip all over again, I would get to Sea World around 10, feed the dolphins and take awesome pics, feed the stingrays, and do the Dine with Shamu meal (around 11:15 when we were there) and then use our VIP seats (from the meal) to see the Shamu main show. We would be done around 2:00. Then we could leave, because we were pretty much done by then anyway. Then you could do an extra park (maybe Universal) for the afternoon or maybe do Sea World on a "rest" day for your family and spend the rest of the day at GKTW. "

 

[angel's momma]

LOVE that you are posting all of your planning here - it is definitely going to help others

So very sorry about his cornea abrasion. I cringed just reading about it. Hope it's not bothering him anymore. So fun that he has an Elf. Hugs for you, it's obvious you're beating yourself up over it.

So sorry he's sick. Praying for him

 

[OhanaDreams]

Thanks to KaylaM who pointed me in the direction of the GKTW guide I have part of the information I want.


From GKTW downloadable guide here

Driving instructions to Disneys Animal Kingdom (20 minutes), Disneys Hollywood Studios (15 minutes),Epcot (15 minutes), the Magic Kingdom (20 minutes)

Turn left out of the Village then take a left onto Hwy. 192, drive 2.7 miles. Turn right onto State Rd. 535, drive
2 miles. Left on State Rd. 536, follow signs to attraction.

SeaWorld
Driving instructions: (Approximate driving time is 20 minutes) Turn left out of the Village and take a left
onto Hwy. 192. Drive 2.7 miles. Turn right onto State Rd. 535, drive 3 miles and take Interstate 4 East.
Drive 2.5 miles and exit at SeaWorld (Exit 71). Follow signs to SeaWorld.

Universal
Driving instructions: (Approximate driving time is 25 minutes) Turn left out of the Village and take a left
onto Hwy. 192. Drive 2.7 miles. Turn right onto State Rd. 535 and drive 3 miles to Interstate 4 East. Drive
6.3 miles and exit at International Dr. (Exit 75A). Turn left at traffic light at end of ramp, follow directions
to the parking lot.


This is only part of what I am looking for. As planners we try and figure out best case and worse case scenario. I have no idea how far away the handicap parking is and once there how long it can take to get to the gate entrance. Back to the boards to see what can be found. ]

Adding this information in to consider later...

LEGOLAND Florida
6000 Cypress Gardens Boulevard, Winter Haven, FL 33884 - (877) 350-LEGO(5346)
http://florida.legoland.com
Tickets: Complimentary tickets available at Give Kids The World Village Guest Services. No reservations required.

Driving instructions: (Approximate driving time is 50 minutes.) Turn left out of the Village onto South Bass Road.
Turn left onto Hwy 192. After 6.5 miles, merge onto Interstate 4 West toward Tampa. Drive 9.6 miles. Merge onto
US-27 S via Exit 55 toward Haines City. Drive 18.8 miles. Turn right onto Cypress Gardens Boulevard. Drive about
3.7 miles. Turn left onto Kehoe Way. Turn right onto Helena Road. Proceed to One LEGOLAND Way.
Parking: Free "
allergy menu]

 

[OhanaDreams]

Buglet continues to have his cough. Today he seems to have a bit more energy. I had a rough time sleeping and kept reading all the wonderful posts of past Wish trippers.

We had made our original dates based on 3 days he has off from school. 2/13 - 2/19 after talking with a few teachers we realized disrupting 2 weeks wasn't smart even though both weeks were scheduled to be shorter. We then shifted one day earlie 2/12 to 2/18.

The other reason February was choosen was to avoid crowds. Now after reading everything I realize that 1/2 of the trip will occur during a mini peak. I talked this morning with my husband and said I think we need to move it to 2/10 to 2/16. I made the mistake of not asking to think about dates when the Dream Factory called. Well live and learn. Its only been a few days since we have known about the trip. Hopefully the change can still be made.

Have a wonderful Sunday everyone.

 

[nuts4wdw]

Hi, there! We, too, have a sick Wish Kiddo today. Which means more time to obsess, eerr I mean, plan. We don't have dates yet. But I already have planned based on the dates I gave them. If I don't get those dates, then I guess I just have to plan again! Your little peanut is a cutie. We were at Mayo last month. It is intense, but good. We are still waiting for answers, so I hope yours comes quicker and easier. So, howdy!

 

[NEmel]

Hope that your little buddy is feeling better soon. Looks like you are a big planner, me too! We are your neighbors to the North. What part of KS are you from?

 

[OhanaDreams]

nuts4wdw ~ Thanks so much for stopping by. I am thrilled about Mayo, but worried too. At least now I know that we may not have all our answers when we go.

NEmel~ Hi Neighbor! We are in Johnson County which is a little south west of KCK.

Thanks to everyone for your well wishes. I dragged Buglet to the Dr's this morning. He has an ear infection caused by the cold.

It was a frustrating appointment. I adore nurses, but for some reason all our information disappears after each visit and I am asked all the basic things again. Each time I am assured that this nurse is putting it in to carry over. We have been with this physicians group for 2 years and I can't even say how many appointments.

When we got to allergies I listed his gluten/casein, flu, and hep A. I then got questioned on how did I know and where are the records. I have had these records sent repeatedly. Infact the flu and Hep A allergy was determined during his 18 day hospitalization in May.

When asked why I haven't been back to the Allergist I blanked on an answer. Why do I need to go back for food allergies and sesitivities. The nurse did not like me stating my son has an egg sensitivity. "Well is he allergic or not?" Ugh. It isn't my fault he can tolerate organic eggs. When I talked to the pharmacist who was investigating his allergies he totally understood what I was talking about. He actually said that it was good we found that he could tolerate organic and it may help him to be able to tolerate regular eggs someday.

You know what is absolutely the most frustrating about the whole thing. His physician filled out his physical last month. She put things on there I didn't even know about. I have the documentation in her own handwriting with his allergies, his limitations everything. But each visit I have to go thru his whole health history. Ugh.

Anyways he saw a new PA today. Buglet was his charming self and the PA was so surprised at how quick and compliant he was. I laughed it off and tried to explain about his central processing problem, but she looked confused. Next came the physical. Since Buglet had been on his feet a few minutes he started to experience autonomyic changes. When she lifted his shirt his skin was mottled. She was shocked a bit. Next came the news about the ear infection. She was surprised that he hadn't c/o ear pain. I tried to explain again that sometimes he feels pain sometimes he doesn't... Well we are on an antibiotic and to go back in 10 days since he is not a good reporter.

In an attempt to keep my sanity I started working on my step down Holiday gifts. These are the gifts for the people who help Buglet out in one small way or another. Buglet loves to give gifts. I have to have something for everyone including the person who holds the stop sign in the parking lot. LOL. As soon as I am done I will post a picture.

 

[NEmel]

Glad you went to the doctor and got some meds so he will feel better. We are in Lincoln so just a few hours North of you! Small world.

 

[OhanaDreams]

Each year our circle of people who help Buglet in one way or another gets bigger and bigger. I wish we had the money to buy nice gifts, but the priority is the medical bills and therapy. So this year this is my aquaintance gifts. This is what the secretaries will get along with a homemade card that I still have to start on. ugh.

Anyways inside each snowman is a Hershey Bar. I just googled Snowman candy wrappers and browesed till I got inspired. I recycled the mouths from a foam kit that fell apart after completion. The snowflake stickers are from a tub I bought on clearance last year. Orange puff paint was 2 years old from a Halloween kit. Candy, Cardstock, Buttons were all bought new. The cardstock I cut to size. Lots of time, but I think in the end after buying the candy and some more cardstock they cost about 1 dollar each. 18 small gifts done. Another 10 slightly more expensive gifts for teachers, therapists and such to go... Then 18 gifts for his classmates and 40 handmade cards.

I know so many are in the same situation. We are grateful for the help our kids get. I just hope that homemade is enough.

 

[NEmel]

The snowman are great and who doesn't love Hersheys!!! Medical bills stink, I always say that is what I work for, literally!

 

[OhanaDreams]

Living and learning... The date issue has been rectified. The Dream representative did not seem to pleased with our request, but the dates were suggested with the idea that it the weather would be cool and park attendance would be low. Who knew they would actually be peak dates.

If I had it to do over again I would ask for at least 24 hrs to think. I don't do well with surprise phone calls at 9:30 pm lol. I think the fact that I would have cancelled the whole thing was surprising to my Husband. It was to me too. I just could not see taking him there for his Dream and having to endure the noise from the crowds. I surprised myself. I think it should be a policy to wait at least 24 hrs for the parents to really think clearly on the dates. sigh. I hate disappointing anyone. I also feel so silly for not thinking to ask for that time to process. Live and learn, live and learn...

Buglet has been back to school for 2 days. He is doing good. For everyone wondering where his nickname came from he has had it since he was "discovered." He was first diagnosed as a blighted ovum. I was scheduled for a D&C. For some strange reason my OB decided to do one last internal ultrasound. Woohoo there was his little heartbeat. He was just a bug, just a tiny little spec. Buglet is also his Geocaching handle.

Sleep is calling.

 

[angel's momma]

So glad Buglet is feeling better now & back at school. Sorry the appointment was so frustrating.

How sweet that he wants to give everyone gifts. Love the snowmen, they're adorable.

Sorry you had problems with the dates, but glad it's been rectified. I wouldn't do well with a surprise call at 9:30 pm either.

Love the story of his nickname, so glad the OB did that ultrasound.

 

[angel's momma]

Haven't seen you posting for a while - hope all is well.

 

[OhanaDreams]

I apologize for not posting for a while. My heart was not in it. Sometimes the enormity of dealing with a rare disability is isolating. We are on a countdown to the Mayo clinic and I am terrified we won't find answers. I am also terrified they will say more surgery...

Yesterday our wish was officially delivered. Buglet was so happy. He couldn't understand why we didn't have to pay anything and went upstairs and brought down his piggybank and offered it for payment. This made all of us tear up.