The Final Test

Guest writer: Mommy

Michelle has won the hearts of these Cincinnati folks. They gave her a clipboard and a some paper and she was off and charting away. She answers their questions independently, and they should just be glad that she can’t ask them all her questions.

Today was the final test. Not the most pleasant one though. First they squirted some stuff up her nose, yuck, then they showed her this little flimsy scope with the camera at the end. That was okay until they shoved it up her nose and into the back of her throat. They did this so they could visualize what is happening when she swallows, if everything is moving the way it should in the direction it should. Well, the unofficial result is that everything is great. It is just teaching and strengthening the muscles in her mouth and throat do it all. Kind of exciting since they have been worried about that for a long time. So hopefully she can now move forward and get to eat a whole bowl of ice cream in the near future.

We are all excited to come back home and can’t wait to see our little man cubs once again.

It’s complicated…

Guest writer: Mommy

This is Michelle after she got to put on the new hospital gown her Grandma sewed just for her. No more stinking gowns that constantly fall off, have broken snaps, and wad up in the back. Now we will use these fancy gowns, and obviously they do more than just look better. They boost Michelle’s spirits.

And then Child Life showed up with this baby and we were off.

Yep, these gowns rock!

Then they realized she might never come back, and the team came and got her.  They took her back to the OR where she got to have watermelon smelly stuff in the big green balloon and then a nice long nap.

We sat and did our wait, that no matter how many times we do it, it never gets easy. Then the doctors came and talked with us. Well…it’s complicated. So complicated that they have no firm answers or plans right now. They want time to sit and mull it over and think about all the angles. And that is just fine.

One more test tomorrow, a day to recuperate and then we are going home.

This ain’t my first rodeo

Guest writer: Mommy

The shirt our Little Miss is wearing in this picture I found at Target. I picked it up because it was pink, sparkly, and had a cowboy sitting on a bucking bronco. Those who don’t truly know me will never understand why those things together caused me to look at it. But then I say what was written on it. “This Ain’t My First Rodeo” and I knew she had to have it.

She wore this shirt today because today and tomorrow she has to undergo some fairly simple, relatively low on the pain scale, but high on the information scale tests. She had a Chest CT with Angiogram done, and she was very brave. In the picture she is showing you where they had to put her IV/Owwie. The doctors she saw today, showed us some of the images. But they don’t mean a whole lot until we do the tests tomorrow.

A long day

Guest writer: Mommy

Today was long. It started at 5:00am and went on forever. We met with the Cardiology team here, had electrocardiogram, and an echocardiogram. We then met with the Anesthesiologist who discussed what they are going to do to prevent any problems during some more studies they will do this week that will require sedation. Next was a trip to Radiology where we met another Fabulous Rad Tech. Michelle was incredibly tough and did an esophagram and then an upper GI study. Now Michelle is totally fed through her Gastric Tube, we have been going to a feeding therapist for two years to help her learn how to swallow. We told her if she would practice her swallow then we wouldn’t have to put a tube down her nose into her throat. You know what . . . she DID IT!!! She swallowed practically an ounce of barium during the procedure.  In fact the Tech made Michelle a Certificate of Bravery.

So in essence. Lots of stuff done, but no answers, yet.

We are all having a hard time as a family being separated. But we are so thankful for all the love and support everyone is giving us.

A new adventure

Guest writer: Mommy

And now we start a new adventure. After a few bumps in the road the last few days trying to get here, we are in Cincinnati, Ohio. The week before we left for Florida, Michelle was diagnosed with a respiratory infection so we started antibiotics, no biggie. But this last Friday morning when the pre-consultation phone calls began, the mention of pneumonia almost cancelled everything. Luckily the whole reason we are coming is her predisposition to get pneumonia. So they advocated that we come anyways. Then immediately after I tearfully sent my three little man-cubs off with Papa and Grandma, we got a phone call from the airlines saying they weren’t going to be able to provide power to Michelle’s portable suction machine and so we would not be able to fly. Ahem, we just flew last week. We tell them that all of our equipment has plenty of battery back up and things were cleared up. Lastly two eventful plane rides later, one with turbulence that made the rides at Disneyworld seem like nothing (we just flew through the South during active Hurricanes and Tropical Storms-those flights were a breeze comparatively) the other being delayed for over an hour for a random security check, we made it. Daddy and I keep saying that we have definitely been facing opposition to come here, guess it is pretty important she be here.

So it begins, something I have been hoping/dreading for the past few months. We are going to meet some pretty smart people that some other pretty smart people we know sent us to. We are praying that they will give us the answers to puzzles that have surrounded us the last few years. We will try and update each night with some brief info on who we meet and what we find out. And we will now move forward.

Sneaky Peaky

So we went on vacation to a Magical Place! It was definitely more than I could have ever dreamed. But we are tired and we have to unpack to pack back up for our next adventure. I decided that I would give you a quick sneak peak.

I plan on going back in 18 months.

p.s. Mommy promises to give me some time on the computer before my next Birthday to update you all on our adventures dating back into May.

p.p.s Yes, she pinky promised, it is set.