May 21, 2012

Cincinnati 2012 - Arrival & Day 1

*I stayed up way too late writing this post. Not that it would have mattered, I was exhausted, and mentally fried. So I'm confessing I had to go back in after the fact and do a few edits and formatting changes. Not that I'm much better off today after getting up for the second day at what would be 3am. If you noticed any changes you aren't going crazy.

 Oh my gosh I am so lucky to have such loving kids. The kids were a little teary eyed that we were leaving but it was nice to know that they'll miss us so much. I love their group hugs.

Though we left within 15 minutes of our planned leaving time we had to circle around the airport a few times because our directions to the Doug Fox parking lot were out-of-date(provided by their website) and that cost us 15-20 precious minutes since we had to go around in circles on the freeway. Then we had a diaper leak and clothing change on the shuttle bus. Plus, let me tell you, bringing medical equipment and supplies with a 50lb girl who can't walk, through TSA is a challenge (we got questioned on one bag, every part of her and her chair had to be swabbed for explosives and I got a pat down so I could be with her) and then when you have to take the tram and walk nearly a mile to the S gate it all adds up and takes awhile. We got to the Delta terminal about 40 minutes before our flight but they were already boarding. When I reserved the tickets more than a month ago I couldn't get 3 seats together. We asked if the person sitting next to us could switch seats in case I needed to leave Ainsley with Sheryl to use the bathroom but it turned out she was traveling with her husband across the aisle. And that turned out to be a good thing.

The lady in that seat was very nice and it turned out she had two special needs children, daughters both with Trisomy 18, in addition to her typical kids. So we passed the 4 hour flight talking about our special kids. It turned out that she was one of the moms responsible for getting pre-school services for special needs kids at the school level. Her daughter, Shelley, was at one time one of the longest living Trisomy 18 kids. Sadly her daughter passed away at age 36 but I'm sure she is always in her heart. Now she spends a good part of the year living in Hawaii, golfs, travels with her husband to see Grand kids, and even has a trip planned to Italy to paint. I thought of my dear friend Ann who I hope is inspired to hear that sometimes we special needs moms get a second life that we never expected, if and when our dearly loved special child's life is not as long as we'd like. I didn't get to tell my airplane friend about Ann's special place, the Ryan House. She was saying how there was no respite back then. Things have changed a lot over the years, largely in part to pioneers like Joanne. I hope she doesn't mind me writing about her. And just perhaps if she checks in on Ainsley and reads this she might enjoying reading about Rebekah. She is a young girl with Trisomy 18 whose mother is working hard to spread awareness about it. She just started preschool which really are due to Joanne's efforts. A full circle moment is what that would be. I was honored to spend time with this special woman.

Ainsley on the other hand wasn't so much enjoying the conversation (though she did offer some flirtatious smiles) and rather wanted to read all the airline materials in the seat in front of her...Wanted little to do with the book I brought. Or the IPad...Instead she chose to play with the seat tray. And the seat belt. It was the fun game we played for 4 hours, Seat belt On, Seat belt Off. Know that one? It's NOT my favorite game.

Cheeky little monkey would not hold still for a picture. I left my good camera at home to "travel light". Boy do I miss the speed.

She had loads of fun opening and closing the window. Which I kept as much to a minimum as possible but can imagine.

She didn't really want to play with her doll except to show her the view a couple times. Then she threw her on the floor.

She enjoyed some milk and pretzels on the plane but did you know they don't have straws on the airplanes anymore? It was rather a nightmare to keep her from spilling it everywhere since it was all for fun and she didn't really eat or drink but played with them for hours.

Our driver (who nearly left us because it took us so long to get from the plane to the transportation terminal) gave us a mini-tour on the way from the airport to the hotel, during which he was quite entertaining with his many stories. One of them was about how one of their shuttle passengers was hours and hours late because he was on a plane and the door came open mid-flight and nearly sucked a flight attendant out the door. She was caught by a couple male passengers. The plane made an emergency landing and all were fine. They fixed the plane and all got back on and flew on to their destination. Yeah right. Great! Now I'm even more afraid to fly. Thanks for that story Frank, I still have to fly home.

 I really needed a drink by the time we made it to the hotel. This beer was recommended by our waitress. It's just beer, brewed in a bourbon barrel so it takes a bit like bourbon.  It was quite interesting and it's not every day you're in Kentucky(the airport is there.)

 After we got to the hotel then Ainsley decided she liked the IPad. She learned to navigate the menus to play shows on YouTube. She's quite clever with it, and over night has become an addict. But if it gets us through this trip maybe it's okay. She's looking like such a big girl. I think in some ways this trip is good for her.

Our waitress messed up Sheryl's order so she brought us a free Creme Brule for Sheryl and....

Graeter's Black Raspberry Chocolate Chip Icrecream, which is apparently Oprah's favorite, for me. It was delicious!

We made to the the ENT clinic early and after registering we still had over 5 minutes but when I asked if I had time to run for coffee they said no they'd be right out and then we sat and waited for a half an hour. Grrrr. Don't mess with my caffeine. Not a good start to our visit.
 At least there was a video to hold Ainsley's attention for a bit.

Eventually we made it back for the FEES. The results were not so great, but not so surprising. Some penetration/aspiration. With the camera and the dye you can really see. There was far more swelling than I expected to see. They said we are doing a great job and to keep it up. You might be able to see her airway on the monitor if you look closely. We will see how her lungs look tomorrow and if they are okay then they are okay with me continuing to allow her to drink liquids.

Later we had our pr-op anesthesia consult which is always very tedious. In between I had the pleasure of meeting up with some wonderful moms from the Tracheostomy Forum and their children who happened to be in town.

 This is me and Jennifer.

This Ainsley with her gorgeous daughter Linnae who heartbreakingly had the experience of her surgeon clamping her tongue for 6 hours during what should have been a 2 hour palate repair, because he was busy planning for a conference. This medical error meant her tongue was clamped down 3 times longer than it should have been (normally they would release periodically). Her tongue swelled so badly that it hung way out her mouth and damaged it so badly that she nearly lost it. The surgeon is top in his field and simply made a devastating careless error. Many surgeries, and years later Linnea still suffers due to this doctor's mistake. Her tongue will never be the same as it was. It makes me angry and sad these kind of stories.

She was in the hospital recovering from a complication from jaw distraction.  These kids are such troopers! I so enjoyed meeting them both in person after years of "talking" on the forum.

This is me and Ainsley with Caty and Nate. He was lucky enough to be decannulated 2 months ago and had a scope to check his airway today and it looks great! We are so happy for the families who one day go on to life trach-and-fancy-free! He was a bit tuckered out and I think the jet-lag was catching up to us(especially Ainsley who wasn't quite her usual happy self). I wish we'd all had the energy to have dinner together, but at least we got to meet up at the hospital.

We've got more tests to come. Stay tuned for news.


  1. Susan - loved this post. How great that you sat next to someone like Joanne on the plane. Not sure about "life after Jack" .... I'll probably be too old leave my rocker by that time :-)

    So cool that you were able to hook up with Jennifer and Caty.

    Looking forward to reading how the rest of the week goes for you.


  2. Oh, I totally know about the fascination with the airplane tray, seat belt and window! Harlie was the exact same way! I thought she was going to wear the tray out!

    Awesome you've gotten to meet up with some other moms. I really wish I could be on the forum more.

    Good luck today! I can't wait to hear how it goes. We're thinking of you!


  3. Susan,
    It was such a pleasure meeting you and Ainsley. You are both absolutely delightful. Linnae and I made it home safely and we will check your blog regularly for updates. Wishing you the best!

  4. Oh Susan, LUCKY YOU, I love Jennifer and Linnae with all my heart.
    Love that you met the trach moms in person. Seriously how awesome is that?!

    Hey Frank, Yikes on the airplane story, I will never look at flying the same way EVER.

    Fate with all the people entwined on this visit right down to Joanne.

    All the love in the universe from me to you.