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[alizesmom]

Last year we were booked, paid and had free dining when less than a week before D-day our son, Brian, got pnuemonia and ended up in the pediatric intensive care on the ventilator. Bye-bye Disney, hello hospital cafeteria.

Brian has recovered though he continues to need the ventilator so here we go again. We are booked at AOA, Lion King Suite for 12/9/13 - 12/15/13.

Cast of characters:
Charlie (DH) age 58
Karen (me) age 59
Boo (foster son, soon to be adopted) age 9
Ciara (adopted daughter) age 7
Brian (adopted son) age 6
? adult whom I can talk into going to Disney with us for free (we need a wheelchair pusher).

All 3 of our little ones are medically fragile, they have trachs, feeding tubes, 2 use ventilators, the boys use wheelchairs full time and Ciara needs hers for any distance.

I am hoping our 3rd daughter, Andrea, goes with us as the extra. She's good with the kids but works full time and plans to go for her RN (she's an LPN) soon so she may be too busy. Who knows, I may be looking for volunteers!

I have also decided to use our trip as a weight loss incentive. I want to lose 70 pounds and figure that next December is a reasonable time frame in which to do it. So, you all heard me and can now harrass me unmercifully if I don't lose at least 5 pounds per month.

 

[alizesmom]

A bit of luck. We prepaid photo pass last year and I just found out it will still be good for our upcoming trip.

 

[Fratthouse]

I'm here! First, let me say what how inspiring you are to have a family with three adopted kids who all have special medical needs. I'm sure you guys have an incredible story, and I would love to hear as much of it as you feel comfortable sharing on the DIS

Second, I can't wait to hear about your trip plans! We have some very dear friends with a daughter who has severe special needs. They have been tossing around the idea of a trip to Disney, so I've been trying to encourage them to actually plan it! I know that there are probably a lot of additional considerations for traveling with kids that need extra medical care, so I'd love to hear about your plans and experience so I can pass along any tips or suggestions. Thanks so much for sharing!

I hope you all have a wonderful trip!

 

[alizesmom]

Introducing Ciara.

She is 7 1/2 years old but will be almost 9 when we go. She's been with us for 5 years and was adopted in Nov of 2008. Ciara has a yet to be discovered genetic problem. She has a cleft palate, one-sided facial nerve palsy, inability to swallow, hypotonia, autism and sleep apnea. She uses a wheelchair for distances, has a trach and feeding tube and a ventilator to breath when she sleeps.

The above describes what she is but not who. She is a little imp with gorgeous brown eyes and an engaging smile. She adores people and will work hard to draw you into her world. Though she cannot speak, she tells you a lot with her actions and body language. She also uses some American Sign Language. If you were to look up the word "determined" you would find her picture.

Speaking of pictures, I will post some if I can remember how.

Andrea has decided she can't come to WDW with us so the search for another adult continues.

 

[alizesmom]

Next comes Brian...

Brian is 6 now and will be 7 when we get to WDW. He has been with us since May of 2010 and was adopted in May of 2011. He is a gorgeous boy with black curly hair, dark brown eyes and long eyelashes.

Brian was a victim of shaken baby at 2 months of age. He now has profound. MR, seizures, cerebral palsy, one sided paralysis and legally blind. Due to prolonged intubation after his injury and resultant scarring he has a trach. Since his episode of pneumonia last year he has also needed a ventilator though he can now go a couple hours without it. He has a feeding tube and was recently started on a special diet to reduce his seizures which were occurring several times a day. Say a prayer for him that the diet works ( so far, some improvement).

 

[alizesmom]

Reminder to self. Never say child is doing well! Brian is in hospital with too many seizures yesterday. They may have calmed down. Time will tell.

 

[alizesmom]

We were lucky and Brian is home already.

Our last guy, Boo, will remain a mystery person until adoption is finalized. Hope you can wait.

Planning a vacation with medically fragile kids takes a lot of organization but can be done. First decision is how to get there.
Flying is faster but I choose not to cope with getting all of the extra stuff through the airport. It can be done but I don't find it worth the time saved. So driving it is

 

[alizesmom]

Driving from home to WDW will require 3 days for us as the kids don't tolerate long drives. Eight hours total per day (including stops) is about all they can handle. Luckily that means less pressure on drivers. With 3 adults, no one should be overwhelmed.

We will be using a 2006 Minivan that has been modified to handle two wheelchairs. We will probably use a special needs stroller for Ciara and stow it in the luggage carrier.

Along with the typical things we all take on vacation we will need the following:
2 ventilators with tubing
2 feeding pumps with bags and tubing as well as feeding syringes
Suction machines with suction catheters and saline
oxygen and tubing
Oxygen monitors called oximeters with attachments
Diapers/wipes for 3 kids
Formula for all 3
All of their medications

When we get closer to going. I will probably ship what I can to our resort ahead of time if they permit us and pack enough to get us there.

On a personal note, today marked an important step moving us closer to adopting Boo. If all goes well the adoption could occur by Thanksgiving.

 

[alizesmom]

Our reservations are for a Lion King suite (accessible) at AOA. I would love a mod or deluxe but need the room and can't afford the difference. Since we will have our van with us we won't be using the bus system.

We are using base tickets which limit us to one park per day. This will work well with our plans for an easy pace. You're not likely going to find us at rope drop nor will we be closing the parks. We will decide on a few absolutely must dos and just enjoy the atmosphere.

I am hoping (praying) for free dining so we can do some TS meals but have decided against purchasing the plan ourselves. None of the kids are allowed to eat by mouth so it would be difficult to buy the meal plan for 6 and see almost 50 meals go to waste.

One of my biggest dreams is to meet and get my picture with Donald Duck. He is my favorite character.

 

[alizesmom]

Ciara

 

[alizesmom]

Brian

 

[alizesmom]

Watched the Disney DVD last night and purchased Birnbaum's WDW 2012. Using them to psych myself up to the trip. I honestly believe that anticipation is half the fun of a Disney vacation.

The kids started school this week and it has certainly been odd to have 8 1/2 hours of quiet. They all go to the same school though different grades. Ciara and Brian go to the same multi-disablities classroom (for aged K through 3rd grade), Boo goes to the 4th through 7th grade room. All 3 adore school and are very excited to be back.

 

[JessiMommy]

First I have to say GOD BLESS YOU for being such an angel to these precious children! Before my DD was born I worked in elementary education with special needs children and it was such a blessing. I am so happy that you have rescheduled your trip to bring your family to Disney. Can't wait to hear more of your plans and more about your family.

 

[alizesmom]

Thanks to those who commented. We feel like we are the lucky ones. Our kids bring so much into our lives.

We have been working with Brian to reduce his time on the ventilator and now have permission to leave him off all day if he tolerates it. This is really great. He has to remain on it during sleep but this will give him so much freedom!

 

[alizesmom]

We are still looking for another adult to go with us. We have asked a friend and she is considering going. It's kind of hard for someone to commit over a year away. I hope MaryLou chooses to go. She's never been to WDW so it's about time

 

[alizesmom]

Can anyone answer a stroller question question for me? It would save space in the van if we left Ciara's wheelchair at home and rented a stroller. How big of a child fits into the ones at WDW?

 

[cogero]

Introducing Ciara.



The above describes what she is but not who. She is a little imp with gorgeous brown eyes and an engaging smile. She adores people and will work hard to draw you into her world. Though she cannot speak, she tells you a lot with her actions and body language. She also uses some American Sign Language. If you were to look up the word "determined" you would find her picture.

Speaking of pictures, I will post some if I can remember how.

Andrea has decided she can't come to WDW with us so the search for another adult continues.

This describes my son Jimmy who is on the Autism spectrum and has verbal apraxia. You really have to watch his face and body language he can be quite a little wisenheimer without talking LOL

Can anyone answer a stroller question question for me? It would save space in the van if we left Ciara's wheelchair at home and rented a stroller. How big of a child fits into the ones at WDW?

Okay we rented a Baby Jogger City Elite this last trip. Jimmy needs to have his own space and doesn't walk long distances. Jimmy is 42 inches tall and weighs about 41 lbs. This stroller goes to a weight limit of 75 lbs. I actually own the stroller at home and it is a dream to push. Jimmy is almost 5.

If you need a true Special Needs Stroller there is the Baby Jogger Liberty which goes to a heigher weight and height but is still easy to push and fold up.

Hope this helps.

You are truly an angel to help these special kiddos.

 

[alizesmom]

Well the whole family has colds. Right now we're running oxygen on all three kids so your prayers or good thoughts are welcome.

 

[alizesmom]

Kids are definitely doing better and back in school. I continue to slowly make our plans for WDW. Still have a lot of time but we are so excited. This will be our first vacation with the kids as well as our first real vacation in over 10 years.

 

[alizesmom]

I'm still here. October was horrid with all of us ill. We ended up with an OPsurgery, 1hospitalization, 3 doctor visits and 3 ER visits. Makes me worry about the kids tolerating our trip.