Traveled with a child with Spina Bifida, Hydrocephalous, etc?

[FireFighter's Wive 3]

Has anyone ever traveled to WDW with a child with Spinia Bifida, Hydrocephalous, Encephalocele, Imperforated Anus, and/or Bilateral Club Feet? Our son was born last month (July 2011) and these are just a few of his medical conditions that has left him in NICU for a month with no end in sight. He is doing really good for everything he has going on and everything he has been through so far. We are just waiting on his Spina Bifida incision to heal so that he can have the VP Shunt placed so that he can get ready to come home with us.

We were planning our first WDW vacation in October of this year but once we found out that our baby boy had Spina Bifida and Hydrocephalous we canceled our trip and now that we know he has even more going on we are not sure when we can plan our trip for. We are just wanint to try to find out if anyone has took a child with any of these medical conditions to DW and if so what age were they when you took them? How did they handle it?

We also have a 2 & 3 year olds and I would love to take them within the next 2 or 3 years but I also would like our baby to be able to go and enjoy it. DH has mentions that I can take the older kids and he would stay home with the baby or he will stay at the rental home with him while I take the older kids to the parks. Any ideas or suggestions for us?

 

[disneymomma01]

Has anyone ever traveled to WDW with a child with Spinia Bifida, Hydrocephalous, Encephalocele, Imperforated Anus, and/or Bilateral Club Feet? Our son was born last month (July 2011) and these are just a few of his medical conditions that has left him in NICU for a month with no end in sight. He is doing really good for everything he has going on and everything he has been through so far. We are just waiting on his Spina Bifida incision to heal so that he can have the VP Shunt placed so that he can get ready to come home with us.

We were planning our first WDW vacation in October of this year but once we found out that our baby boy had Spina Bifida and Hydrocephalous we canceled our trip and now that we know he has even more going on we are not sure when we can plan our trip for. We are just wanint to try to find out if anyone has took a child with any of these medical conditions to DW and if so what age were they when you took them? How did they handle it?

We also have a 2 & 3 year olds and I would love to take them within the next 2 or 3 years but I also would like our baby to be able to go and enjoy it. DH has mentions that I can take the older kids and he would stay home with the baby or he will stay at the rental home with him while I take the older kids to the parks. Any ideas or suggestions for us?

HI!!! to the Dis!!! My daughter is 10 and was born with Spina Bifida and mild hydro!! We have been to Disney when she was 5 and are going for her Dream trip in October!! Honestly,it was pretty much like traveling with any kiddo, with the exception of the wheelchair and crutches. Plus, you get the added perk of pre-boarding the plane and the special attention paid to you kiddo at the parks!! The worst part of the trip was honestly just getting through the airport with the silly car seat!! This trip will be a little more challenging simply because of the special bathroom needs, but I think the family assist rooms will fit our needs just perfectly.!!

I am going to PM you my info...I know it is all so overwhelming now, but if I can help answer any questions, please don't hesitate to ask!! I am not offended by personal questions if it is going help you feel at ease with something you are facing. Let me know if you have any other questions!! Congrats on your new little blessing!!! You are beginning an amazing journey!! One that I wouldn't have passed on for anything!! That little boy is going to amaze you....trust me!!

 

[alizesmom]

Give yourself time to become familiar with your son's care then do whatever you wish. When small you will probably be able to make do with a stroller like any other baby. We have traveled with hydro, trachs, vents, feeding tubes and all manner of equipment. You can do this. PM me if you wish. Karen

 

[LamieMom]

Hi there-

Congratulations on your baby boy! We have a nearly 4 yr old daughter w/ SB, hydro, some bowel/bladder issues and some sensory issues and she took her second DW trip this June. She was 16 months for her first trip. She also had a significantly sized lesion so her hospital stay was prolonged at 75 days. Because it took so long to close the lesion, I remember being worried about her comfort and excess pressure on the healing wound in December when we traveled for the holidays - 8 hr car trip (she was born in August), so we made a few extra rest stops so that we could take her out of the car seat and take some pressure off her back. This June, we still used a stroller for her rather than her toddler-sized wc. It worked out really will with the "stroller as wheelchair" sticker from guest services. We are doing a plane trip with her wc for the first time in Feb for another DCL cruise. We also did a 3-nt with her and a stroller (they took her in the kids club in her stroller).

Right now, with your little one still in the NICU, you are in crisis-mode. It will get better. Please feel free to PM me. Each of our kiddos is unique and such a joy.

Lori