Monday, September 26, 2011


This post is going to be a bit scattered. I have several things I want to talk about. The first is, of course, Reagan. She slept well last night and has been a good girl all day today. She's a little laid back today, not smiley but we have gotten some laughs, still spitty (and slightly gaggy)...but overall she's fine. I think she's still fighting off those bad days...but as of now, she's winning! It's pretty miraculous, when you think about it, that she had a good week the entire week before we left for vacation and then hung on for us and had a great week in the Bahamas (with only one big meltdown) and now she's still having a reasonably good week! Amazing! Prayer works. Another thing I wanted to mention in this post is how we handled the airplane ride with Reagan (to answer a question from yesterdays blog). In the past we've used her car seat on the plane. It was a hassle, SO heavy, and it took up so much space...her long little legs just weren't fitting anymore (her knees would touch the seat in front of her). So this time around we checked her car seat and we carried on her brown special tomato soft touch sitter (minus the wooden wheeled base)...our favorite chair for Reagan (we use this thing all of the time). This seat is not FAA approved, but we needed it in order to keep her upright and keep her from slipping down the seat (it has a big pommel between the legs) doesn't go past the bottom of the airline seat (so it doesn't take up any extra room and we were able to lean the chair slightly, so she was leaning back ever so slightly). Then we used something called CARES, a harness that is FAA approved, and we just strapped it over the top of her special tomato seat (around the back of the airline seat) and we used that as her harness (instead of the harness already attached to the seat). We did get asked if this contraption was FAA approved on two out of four flights, but each time we just explained that she couldn't sit without the seat and that we were using the CARES restraint that is approved and that seemed to satisfy them. We also brought along the hensinger collar for her just in case we needed it to keep her head up, but we were able to get by without using it (this could be used with kids with little to no head control). So that's how we did it. It was nice having the special tomato seat along with us and although it would have been nice to have the base (there's no way to fold it down), we were still able to use it in the house propped up on the sofa. For transporting the seat, I bought a light weight, collapsible pull cart so we could pull it through the airport. The last thing I wanted to mention is a wonderful cause that my good friend Heather has taken on. She and several other wonderful people have taken something that was a horrible incident (what appears to be a scam... special needs kids being promised iPads and then never getting them) and began their own mission (Mission iPossible) making sure that each and every one of these kiddos gets the iPads they were promised. They have already gotten 18 out of 20 kids iPads. They only have two to go! Your donation is tax deductible and completely legit. Please help them in this heroic mission!


Zoey's mom, Heather said...

Welcome home my sweet friend and to say that I am BEYOND happy that the week went the way it did, is an understatement!

And, thank you for the beautiful shout out on the Mission. As of tonight ... Mission Accomplished!We reached our goal. 20 iPads secured.18 delivered and 2 more to ship in the next day or so. Incredible. Really and truly.

We will catch up tomorrow. Even though you were great about keeping me posted on the days in the Bahamas, I am anxious to hear more details!

Shannon said...

We just scored a Special Tomato soft touch sitter with base at a lending facility nearby. We signed it out and can use it for as many years as we'd like! We LOVE LOVE LOVE it! Unfortunately, the seat is a size 1 and Marissa desperately needs a size 2. We're hoping one comes in so we can swap it out.

Glenda said...

Thank you for the details on how you traveled. I'm going to look into some of this equipment for Lilly. She has a tomato stroller, but I'm unfamiliar with the seat. We don't have many seating options for her, even at home. We've tried to get a blow-up seat that conforms to her body, but it wasn't approved by insurance and medicaid would only pay a very small portion of it ($35 out of over $700. I'll never understand why special needs equipment is so expensive. :)