Zander's MAW/GKTW trip!

[Lauraatz]

Our family is going to Walt Disney World and Give Kids the World through Make-a-Wish!!!!
Let me back up a little and tell you about our family. I have a wonderful husband, Alex (41), who is my rock. My name is Laura (37), I am the care provider to two very special, special needs kiddos. Alex and I love to collect antiques especially Victorian furniture. I have a step daughter Alexis (18) who is off living her own life now. Next comes Alley (8), she was born 7 weeks early but is great! She is one of the top in her class at school. She loves cats (I think mostly because we call her our Alley cat) and bugs. Then comes Tabitha and Zander (7) to our family. They are twins born at 25 weeks gestation. Tabitha believes that she is a princess. Everything is either pink, frilly, or glittery to her. She loves life and was born with a great capacity for empathy for everyone. Zander is our angel. He loves to be cuddled and tickled and is happy 90% of the time.

 

[Lauraatz]

I want to get all the sad stuff done in one posting and not dwell on it. Our twins are blessings to us just the way they are so we try to not emphasize their issues.

They were born at 25 weeks and have had to struggle every day since then. Tabitha coded several times the night she was born. In fact the doctor stop working on her and brought her to me so I could see her alive before they took her to the NICU. She was not supposed to make it that night. But, a miracle happened and she figured out how to breathe after an intense four hours of being manually bagged. We were blessed by having a very determined neonatologist. Tabitha suffered a brain bleed from that night. She has cerebral palsy because of that bleed. It mainly affects her left side. She wears afos and has had to have a few surgeries on her legs. She doesn’t have the full use of her left hand. It is hard for her to do anything that requires use of two hands. We are coming to find out that that is a lot. She is great with coping. She doesn’t realize her body is any different from anyone else’s. She is a trooper. BUT, this story is not about her. It is about Zander!!! (I just felt she needed some attention. She has suffered through her needs, they just aren’t as severe.)

 

[Lauraatz]

Here is Zander’s story. He did great the night he was born. He was even on a c-pap machine instead of a ventilator. Then came day 2 and the decline of my poor baby’s health. Zander had also suffered a brain bleed. Unfortunately, his bleed caused hydrocephalus. During one of his treatments for the hydrocephalus he caught meningitis. Between the hydrocephalus and the meningitis, Zander has been left with one quarter of functioning brain. He has struggled since with respiratory, gastrointestinal, orthopedic and neurological issues. He is my Darth Vader kid because he is more machine than kid. He has a trach, shunt, g-tube, he wears afos, and is completely immobile. The poor baby has had at least 20 surgeries or procedures over his seven years of life. He has scars from head to toe. So, that is all the bad stuff, next post is all Zander’s positive stuff!!

 

[Lauraatz]

Zander had two really hard years. After those years, he has improved more and more. I literally went from planning his funeral to planning what piece of medical equipment or medication we could get rid of. So far he has come through a seizure disorder (he has been seizure free for over 4 years), chronic lung issues, and hasnt needed a shunt revision in over four years. We have gotten him off oxygen completely. We are currently working on getting his trach removed. His most recent surgery was airway reconstruction. He goes to a great special needs school. The adult to child ratio in the class is almost one on one. Zanders personality has blossomed from being in school. He is a little prankster. He loves to pull his sisters hair and then laughs and laughs. There is not a spot on his body that is not ticklish. For all the misery and pain he suffers on a constant basis, it is amazing how he is always happy and full of laughter. He truly is our miracle and he blesses our life every day. It is so cool how a 7 year old child has taught us more about having the right attitude than any other could.

So, that is our familys background. Next, I tell you about our make-a-wish story.

 

[wiigirl]

Following along!

 

[Lauraatz]

One of Zanders home health nurses suggested we should look into getting a wish for Zander. Man, my husband was on that in a second. After the twins were born I had to quit my job in order take care of mainly Zander. Ever since then money has been extremely tight. We have only been on one family vacation since they were born. This trip has been a dream for our family for a very long time.
My husband spoke to MAW and in the matter of a week we had doctors approval. About a month after that we had our meeting with our wish grantors. It was hard to tell where Zander wanted to go. He just laughs when you talk to him. Zander loves music and lights so I had a hunch he would love Disney. Then we had to decide on Land or World. So, I got online to compare the parks. When I stumbled on GKTW, thought it would be perfect for Zander and his sisters. Ice cream is about the only thing I can get him to eat by mouth and GKTW is definitely known for their ice cream.
We had two very sweet wish grantors visit us one evening. We filled out tons of paperwork. They interviewed all the kids. Took a tour of the kids rooms. Zanders room is covered in Star Wars and the girls room is Alice In Wonderland themed. Then we waited and waited and waited. Finally, on January 2nd we got a call that our wish to go to DW and GKTW had been granted. We just had to pick dates. I sent back some dates. A week later I received an email that they are working on the dates for April 27th May 3rd. That is where we leave off on our adventure.

 

[Lauraatz]

Thank you for following our story wiigirl!

 

[Lauraatz]

So, I tend to be a worrier. These worries have been flooding my head. If anyone can give me advice I would love it!!
1. How do you fly with a big wheelchair?
2. Is it hard to fly with lots of medical equipment?
3. Sorry but I have ask. If Zander meets the height requirement on a ride, can he still fly out if he doesn't have use of his body?
4. Are there any veterans out there with kids with CP that could give me advice?

 

[Lauraatz]

I am so new at this. I have spent all day trying to add pictures and make an avatar.

My two princesses!

 

[Marsone1]

One of Zanders home health nurses suggested we should look into getting a wish for Zander. Man, my husband was on that in a second. After the twins were born I had to quit my job in order take care of mainly Zander. Ever since then money has been extremely tight. We have only been on one family vacation since they were born. This trip has been a dream for our family for a very long time.
My husband spoke to MAW and in the matter of a week we had doctors approval. About a month after that we had our meeting with our wish grantors. It was hard to tell where Zander wanted to go. He just laughs when you talk to him. Zander loves music and lights so I had a hunch he would love Disney. Then we had to decide on Land or World. So, I got online to compare the parks. When I stumbled on GKTW, thought it would be perfect for Zander and his sisters. Ice cream is about the only thing I can get him to eat by mouth and GKTW is definitely known for their ice cream.
We had two very sweet wish grantors visit us one evening. We filled out tons of paperwork. They interviewed all the kids. Took a tour of the kids rooms. Zanders room is covered in Star Wars and the girls room is Alice In Wonderland themed. Then we waited and waited and waited. Finally, on January 2nd we got a call that our wish to go to DW and GKTW had been granted. We just had to pick dates. I sent back some dates. A week later I received an email that they are working on the dates for April 27th May 3rd. That is where we leave off on our adventure.

Lauraatz,
Really enjoyed reading about your family. Congratulations on Zander's MAW trip. Sending you some pixie dust to ease your worries on planning this magical trip. I think I read somewhere about medical equipments in the disability forum. Also as for the wheel chair you can check that in before you board the plane. Once you get your flight itinerary, call the airline or go to their website see what their rules are about medical equipments

 

[Lauraatz]

Lauraatz,
Really enjoyed reading about your family. Congratulations on Zander's MAW trip. Sending you some pixie dust to ease your worries on planning this magical trip. I think I read somewhere about medical equipments in the disability forum. Also as for the wheel chair you can check that in before you board the plane. Once you get your flight itinerary, call the airline or go to their website see what their rules are about medical equipments

Thank you. I will do that. We are patiently waiting to hear about our flight. (not really patient at all, but trying) That is great advice about the airline website. Other than the MAW thread, I haven't really checked out the disabilities thread. I will do that.

 

[Lauraatz]

We went to the last pediatricians, before our trip, appointment yesterday. I unloaded all my worries on him. The Dr. basically said to stop worrying and have a great time. Zander has no restrictions with his shunt!! He said do as much as you can at WDW. That is such a relief for me. I also remembered to get the paperwork to get a handicap placard. We have a plate but I read some where to bring a placard if you could. I am adding that to my list of must dos before we go. Now we just have three more specialist to see and at least two minor surgeries before we go. I also need to order both twins new AFOs. Tabitha's are falling apart. That is all our new plans for now. Hope everyone has a magical day!!

 

[Redwavess]

Welcome to the Dis boards and...

Hooray for your Make-A-Wish trip!!!

I wish I could help you with the questions you have but we didn't have a wheel chair on our wish trip so I'm not sure about those questions. But I agree that the DISabilities forum would be a great place to find the answers. Have you had a chance to take a look at that forum? I hope it eases your mind!

The story of your twins is inspiring!! Praying that all goes well for you all!!Thanks for sharing the beautiful pictures of your family with us!! I love the picture of the girls dressed up. What was that for?

Let me know if you any more questions about your wish trip. I hope I can help!!

Happy planning,

Madeline

 

[Lauraatz]

Welcome to the Dis boards and...

Hooray for your Make-A-Wish trip!!!

I wish I could help you with the questions you have but we didn't have a wheel chair on our wish trip so I'm not sure about those questions. But I agree that the DISabilities forum would be a great place to find the answers. Have you had a chance to take a look at that forum? I hope it eases your mind!

The story of your twins is inspiring!! Praying that all goes well for you all!!Thanks for sharing the beautiful pictures of your family with us!! I love the picture of the girls dressed up. What was that for?

Let me know if you any more questions about your wish trip. I hope I can help!!

Happy planning,

Madeline

Madeline,

Thank you for your kind words. I have looked at the disabilities thread. There is so much information it can be overwhelming. So, I have been checking it out a little at a time. Speaking to the pediatrician at the special needs clinic helped to alleviate most of my concerns. I will definitely let you know if I have any other questions. It is so good to have a veteran wish tripper to talk to.

Those were the girl's Halloween costumes. I made them from some old upholstery material we had left over. I told my husband we would have to go to the Renaissance Festival this year so they could wear them again.

I look forward to reading your thread.

Laura

 

[Lauraatz]

Last Thursday we received an email that our dates for 4/27-5/3 have been confirmed. Our GKTW reservations made and our Southwest Airlines flight booked. We are ready to go!!! This weekend the girls and I made a countdown chain. Ninety days to go!!!

Friday Zander is having a scope of his airway to see if we can possibly remove his trach. It would be awesome if that could be done before our trip. It would give him sooo much more freedom, especially from medical equipment. Please, keep him in our prayers.

Please Help!! Our girls really want to go to the Bibbity Boppity Boutique. Is it necessary to make reservations and do you need a down payment to hold the reservations? How much does it cost? Is it worth going? Thank you for any input you can give me.


Have a great day!!

Laura

 

[Lauraatz]

Zander's scope went well. His airway is nice and open. Our next step is to get a sleep study with his trach cap on. If that is good we get to pull his trach in late March. Just in time for our trip!!! It is so awesome when Zander reaches huge milestones. He is definitely my super hero!!!

 

[Redwavess]

Zander's scope went well. His airway is nice and open. Our next step is to get a sleep study with his trach cap on. If that is good we get to pull his trach in late March. Just in time for our trip!!! It is so awesome when Zander reaches huge milestones. He is definitely my super hero!!!

So happy to hear that the scope went well!! And really excited for you guys about pulling the trach. I will say some prayers that all goes well and it will be removed. That's awesome that it would be just in time for the wish list. Congratulations on reaching these important milestones!!!!

Go Zander the super hero!!!!!!!!!!!!!!!!!!!!!!!!!!!

I love you countdown chains!! They are adorable!! Thanks for posting the pictures!!!

About Bibbidi Bobbidi Boutique it was totally worth it for us. Our daughter loved it and it was so fun for me to watch her turn into a princess. Someone made her a princess dress so she wore that and looked just adorable. We went to BBB in the Magic Kingdom then had lunch at Cinderella's royal table!!! It was magical!!! A definite highlight of the trip.

You do need reservations and I know they asked for a credit card to hold the reservation, but I'm not sure if they charged the card or we paid it in full when we got there.

Happy Planning,

Madeline

 

[BellesLibrary]

You have a beautiful, beautiful family, and I am excited for all of them to experience the magic that is Disney!

Joining in on your PTR!

 

[Lauraatz]

So happy to hear that the scope went well!! And really excited for you guys about pulling the trach. I will say some prayers that all goes well and it will be removed. That's awesome that it would be just in time for the wish list. Congratulations on reaching these important milestones!!!!

Go Zander the super hero!!!!!!!!!!!!!!!!!!!!!!!!!!!

I love you countdown chains!! They are adorable!! Thanks for posting the pictures!!!

About Bibbidi Bobbidi Boutique it was totally worth it for us. Our daughter loved it and it was so fun for me to watch her turn into a princess. Someone made her a princess dress so she wore that and looked just adorable. We went to BBB in the Magic Kingdom then had lunch at Cinderella's royal table!!! It was magical!!! A definite highlight of the trip.

You do need reservations and I know they asked for a credit card to hold the reservation, but I'm not sure if they charged the card or we paid it in full when we got there.

Happy Planning,

Madeline

Thank you for the prayers. I made the girl's reservations for Bibbidi Bobbidi Boutique today. We could only get in at Downtown Disney. Although, the girls don't care. They are literally over the moon. I saw your pictures on your trip report. They are precious. It looks like your older son is very close with his sister. I think that is so special. Thanks for following along with our family!!

 

[Lauraatz]

You have a beautiful, beautiful family, and I am excited for all of them to experience the magic that is Disney!

Joining in on your PTR!

Thank you for the kind words. Thanks for following along on our journey!