Maybe I am being a worry wart...

[Bitsmommy]

I am hopeful that someone out there can make sure that I am best prepared for my upcoming trip.

My family and I are in the process of adopting the BEST little boy in the world. He has been part of our family since he was 7 weeks old. He is 9 months old and was born addicted to MANY, MANY drugs. His lungs were damaged during his...we will just call it a "water birth." Anyway, he has right sided hemiparesis and sensory processing issues. In addition to really bad feeding issues. He is in therapy for all of these things at home. We are doing great at home, but I am getting a little nervous about a 10 day trip to Disney and something happening that I am not expecting. First off, he isn't a fan of sunlight... hates hats and hates sunglasses too.. ANY POINTERS THERE. Also, this child has HORRIBLE REFLUX, HORRIBLE. He blows chunks like a drunk frat boy! Multiple times per day. Nothing like any typical reflux baby I have ever seen. Any pointers for that one??? Finally, he sounds like he a Canadian goose when he breathes. No other way around it. I am concerned that the heat and humidity in Florida is going to make that a little worse. His doctor knows that he is going and hasn't said anything about it.

That being said, does anyone have any constructive advice. Pointers??? I want him to enjoy the trip too. Leaving him at home or with a sitter isn't an option! No one can get him to eat, but me or my husband. It takes special training. We are planning on splitting up if things become too much for Sweet Baby C. One of us will play with Big Brother while the other one goes back to the room to chill out.

Thanks for any words of wisdom that you may have~!! Surely, I am not the only one out there with these issues.

 

[bookwormde]

First, has he been seen by a GI group at a major childrens hospital, with the reflux that bad I would be continuing to look for new teams to deal with it. With that said if you have resonable warning I do not see why it should have an over riding impact at WDW, as long as you can keep him hydrated.

If you are going in or around the summer season, most of us with kids with sensory issues go at rope drop, and leave at 11 or 12 when it gets to hot and crowded and just head back to the resort for a swim, to eat lunch, to explore and to nap. Then when and if everyone is recharged we head back after the heat breaks and the crowds have lessened.

We carry an over the sholder soft cooler loaded with water bottles (a couple bottles frozen to keep it cold)

bookwormde

 

[peemagg]

I would get or take a stroller with a real good sun shade on it. I do know that there is also a company out there that makes extensions to sun shades. The ones that I am thinking of is called Protect a Bub and they sell them at Babies R Us. They clip onto the existing sun shade of the stroller, giving you better protection.

Don't plan on using the Disney strollers for the little one. They are hard plastic and not made for infants. If you have a good one that he is comfortable in from home, I would bring that. If you are flying, you can gate check it for free.

I'm not sure how old your other child is, but if they also need a stroller, I would bring two or rent one from Disney (or outside vendor) for them. Both kids would probably be more comfortable that way. It will also make it easier for you all to split up if needed. If you use a Snugli like thing for him at home, bring it with you to the parks. I have found that on the buses, it helps to have babies attached to the body instead of just in your arms. It just feels more secure. The carrier also allows you to free up your hands to help with things.

 

[Bitsmommy]

First, has he been seen by a GI group at a major childrens hospital, with the reflux that bad I would be continuing to look for new teams to deal with it. With that said if you have resonable warning I do not see why it should have an over riding impact at WDW, as long as you can keep him hydrated.

If you are going in or around the summer season, most of us with kids with sensory issues go at rope drop, and leave at 11 or 12 when it gets to hot and crowded and just head back to the resort for a swim, to eat lunch, to explore and to nap. Then when and if everyone is recharged we head back after the heat breaks and the crowds have lessened.

We carry an over the sholder soft cooler loaded with water bottles (a couple bottles frozen to keep it cold)

bookwormde

We leave in 10 days! Maybe it won't be blazing hot then, but it is usually extra humid!

He certainly does see a GI specialist at Vanderbilt Children's Hospital. It is the best hospital in this area, probably one of the best in this country. I am more concerned if the little guy decides that he needs to vomit on a ride or something. Honestly, if you see him do this, it is kind of disturbing, but nothing abnormal in our world. He takes 3 different types of medications. Hydration is another issue.

I think that the rope drop, recharge and return method is going to be our plan of attack. We have a typically developing 4 year old and, to be honest, it works for him best too!

 

[jmartinez1895]

I am sending you a PM. Just wanted you to be sure to look for it.

 

[Bitsmommy]

I am sending you a PM. Just wanted you to be sure to look for it.

Got it and Pm'd you back. Thanks so much! I appreciate you very much!

 

[bookwormde]

My DS has sensory motion issues so we keep buckets in the car and motion sickness bags when we are out somewhere with a trigger.

Vanderbilt has a good reputation, I just wanted to check since some clinicians do not refer that far up the chain.

The schedule I described works will not only for our DS but for my DW and me.

bookwormde

 

[Bitsmommy]

My DS has sensory motion issues so we keep buckets in the car and motion sickness bags when we are out somewhere with a trigger.

Vanderbilt has a good reputation, I just wanted to check since some clinicians do not refer that far up the chain.

The schedule I described works will not only for our DS but for my DW and me.

bookwormde

This child is a pretty high profile abuse case. The only PRO of that circumstance is that he gets very, very good medical referrals and care. He currently has 5 standing therapy appointments per week and is making great strides. I just wish that the courts worked as fast as his body is repairing itself.

This blog will give you an idea... if you are compelled to read it. If not, thanks for your concern!

http://onlythesheppards.blogspot.com/2010/08/better-life-for-sweet-baby.html

 

[Bitsmommy]

I just want to thank everyone that has pm'd me well wishes for our family. Pray for pixie dust!!!!