Will the van hold it all? Another Wish Trip

[Camster0307]

Not too much to add at this time. We've ended up going back and forth to the hospital this week (only a 2 hour drive away). Alize's trach keeps falling out. He's grown so much that it's too short. We're waiting for a custom made one.

OMG - will it be ready in time for your trip? Good luck with that!

BTW - I too have a modified Town & Country - makes life so much easier. I think I used to avoid going out alot with Amanda because it was getting harder and harder to lift her in & out of the car; and I tore my rotator cuff lifting her wheelchair (it doesn't fold or come apart!) Anyway, I don't think twice about going anywhere with her anymore - wheel in, wheel out!

 

[mrsksomeday]

Not too much to add at this time. We've ended up going back and forth to the hospital this week (only a 2 hour drive away). Alize's trach keeps falling out. He's grown so much that it's too short. We're waiting for a custom made one.

I hope the trach comes soon, that has to be upsetting when that happens.

I'm an underpacker so my family is restricted to one bag each. I plan to do laundry at GKTW every few days so 2 sets of jeans, 3 shirts (like we won't pick up a few at WDW) and appropriate underthings. Also a warm sweater or jacket. Slightly more jeans for Alize for when he misses the diaper (how do little boys manage this so well?).

Nothing wrong with being an underpacker especially if you have a washer and dryer readily available. I bet there will be some shirts you will pick up from WDW, can't wait to see them, I hope you take many pictures!!

Trip is all mapped out. What used to take 24 hours the last time we went is now down to a little over 16. Now we can drive comfortably on the way down and maybe push it a bit more going home.

Wow, you shaved 8 hours off the trip good for you!! I hope you have a safe, uneventful drive down and back.

Another star of our tale has to be our van. When Alize started to get too heavy to lift in and out of the car we started looking for an accessible van. Even used they are pricey. Our first day we found a 2004 Town and Country with raised roof and lots of fluff. It only had 17000 miles on it and still had 6 years of the manufacturers warrenty. For an additional $800 we were able to get a lift installed. Now, travel is soooo easy. Drop the lift and roll Alize in. No more lifting him into a carseat, no more taking the wheelchair apart in the snow so that it fits in the trunk.

I am so glad you found an accessible van. Bill has a 2005 Dodge Grand Caravan with a ramp, it is a godsend. We push a button the ramp slides out and he drives himself inside. It is priceless to us . So freeing to be able to go where we want to go.

Gotta go do housework. Tonight, the WIGGLES. Karen

Have a great time!!

 

[LeeLee2U]

Have a blast tonight!!!
I too planned on doing laundry, while we were there. Didn't happen, but I tend to be an overpacker, so we had plenty of clothes. I did handwash 1 shirt in the sink 1 night.
I'm so glad about your van. We have a Dodge Grand Caravan and as Braeton can get in and out of his wheelchair the back is great for just lifting the chair up and storing it. Before that we had a Chevy Lumina and a Grand Prix. So we had to take the chair apart to store it and then had to reset it up. It's one that folds easily AFTER you take the seat and back off. Lots of fun in the rain!!! But even though he can transfer, the lifting is already killing my back so I can't imagine trying to transfer him in a Carseat if he was totally chair dependant. He couldn't hold himself up at all when he was younger and that was hard enough. God Bless you and I'm so glad ya'll were able to get that van. They are very comfortable!!
Can't wait for an update on the WIGGLES!!!
Leah

 

[alizesmom]

I've been a little lax in posting. Lots going on including a small change in cast of characters. Nurse Wendy is out (don't even ask) and waiting to see who will be willing to go with us. We're picking up Alize's new improved wheelchair tomorrow. New trachs aren't here yet. Talked with MAW coordinator tonight and everything is moving forward. They have approved paying for us to drive down and home so we don't have to worry about the cost of hotels. They are fantastic people. Will try to post more soon. Karen

 

[wendygrace]

Sorry I'm late. And sorry to hear Nurse Wendy won't be coming.

bill is right about the wish lounge info. take head. great place to take a rest.

Little over a month left! yeah!

 

[mrsksomeday]

I've been a little lax in posting. Lots going on including a small change in cast of characters. Nurse Wendy is out (don't even ask) and waiting to see who will be willing to go with us. We're picking up Alize's new improved wheelchair tomorrow. New trachs aren't here yet. Talked with MAW coordinator tonight and everything is moving forward. They have approved paying for us to drive down and home so we don't have to worry about the cost of hotels. They are fantastic people. Will try to post more soon. Karen

We understand real life comes before the DISboards. We patiently wait for updates .

I am so sorry you are looking for another nurse to go with you. I understand how frustrating that can be for a caretaker to not do something they are supposed to do.

YAY about the new improved wheelchair, boo about the trach's not showing up yet. I am glad they approved the costs of driving down for you. Here is a whole lot of pixie dust hoping things start going more smoothly.

​

 

[Eeyore's Mom]

All I could think of when I saw nurse Wendy is out is how lucky the replacement is going to be! I sure hope it is someone that is good and easy to travel with. I am so excited that you were able to get a van to meet your needs. We are very fortunate in that we don't have that concern but I have a tough time lifting my 4 year old when he can support a lot of his body himself so I feel for you!! Before you know it you will be loading up that van and heading south....

 

[LeeLee2U]

Wishing you all the best in finding that replacement!!! Yeah for the new w/c and hoping the trachs will come n soon , like YESTERDAY!!!!!!!!!!!!!!! Here's ahug and some pixie dust for you!!!!
And I LOVE ya'lls pic!!

 

[alizesmom]

Our planning is moving forward an inch at a time. The new wheelchair is perfect and the new trachs are in place. Nurse Wendy has been replaced by Nurse Michelle who is very willing to take a trip to WDW. The van gets prepped for the trip in mid November. Our car dealership has a 24 point check for people traveling. Still haven't called for reservations for our trip down. My hope is to do another "as it happens" thread so my faithful laptop will be part of the cargo. My biggest fear right now is that our trip will need cancelled for medical reasons. Alize has started having mini-seizures this weekend. They are brief but concerning. Karen

 

[Eeyore's Mom]

Sorry to hear about the mini seizures- hope it's just a matter of adjusting a med. and nothing more serious. The trip will be here so soon now!! Nurse Michelle is pretty lucky.