It's Over....Almost

I'm ready to be wheeled away for scopes!


Testing For Wire Placement With Firetruck X-Ray


Impedance Probe Test - And Eating!


Impressing the Feeding Therapists


Saying Goodbye to Children's Cincinnati


More Eating!


Almost Rolling Off the Bed!

What a roller coaster of a week! I'm surviving on very little sleep and have started to feel pretty spacey. I never really adjusted to the 3 hour time difference so at least it should be easier to get back in the swing of things when I get home tomorrow. It was hard to get up this morning at 6:30am after waking up several times a night for the third night in a row to stop feedings in preparation for a procedure. After I got out of the shower I discovered they have no hairdryers in the room like they do in Seattle so I had an au-natural hair day. Not good considering I'm overdue for a cut. I do feel better now than I did yesterday (even if I am tired and having a bad hair day) after the initial disappointment of the scope that showed swelling. I really had thought it would be better.

Yesterday Ainsley had the impedance probe placed to monitor for reflux. The probe was placed about 1:00 and she took a few hours to console. It brought back many memories of the 9 months she had the NG tube. I even got to help replace her dressings just for old-times-sake. They took an x-ray to check placement of the wire with a firetruck x-ray machine. Cute but Ainsley couldn't have cared less. Of course Joanne got pictures since Tom is a firefighter she knew he and his buddies will get a kick out of it. When we got back Ainsley was tired but later on I tried to make the most of the opportunity to get some data, and woke her up to try to get her to play on her tummy, sit in the highchair and......eat (So all that could be recorded for the test. The more data the better.) Wow was that a surprise! I guess hunger plays a large role in her feeding issues because she ate like I've never seen her eat! She had rice and milk (ate it all), peas (gagged but still kept eating), home-blended formula, and vanilla pudding (liked that more than in the past when she'd tried it.) I would guess she ate about 4 tbsp of food. For her that is about twice as much as she's ever eaten. What was most remarkable was that she opened her mouth eagerly and quickly ate it. None of the swishing it around like usual. Of course it wasn't perfect eating, rather like when you start to feed a newborn but a huge improvement over what she's done in the past. Then.....

We move on to the ENT clinic for the FEES. It was a large team of very nice doctors and nurses. They had me hold her arms in the exam chair while they inserted a fiber optic scope through her left nare so they could watch her swallow with the camera. She swallowed right away, there was no problem at all getting her to do her part like we'd had in multiple prior swallow studies. They added green food coloring to the food and you could see it go down and pool a bit on the swollen airway tissue. So the conclusion is that she would be aspirating if the swelling were not present. Not good. But also not surprising. She seemed to do better with thick rather than thin liquids. That's good information. She seems to have normal sensation and reflexes as far as swallowing so that is really good. The doctor thought as her difficulties are in controlling the food in her mouth prior to swallowing. So that may improve with time just like the rest of her motor skills. With all the swelling it's hard to know if there may be an anatomical abnormality, hopefully not. I hope to get an overview of their conclusions next week. But at the end the head doctor said to continue feeding so she doesn't lose the desire to try to eat but make sure its pleasant. We already knew that but it's good confirmation of my approach.

We killed an hour and proceeded to our second appointment. A consultation with the feeding team (nurse, speech therapist, nutritionist, geneticist.) where they asked many many questions about her feeding. We put her in a high chair, and again SHE ATE! She very much liked her new friends and wouldn't stop smiling and looking at them. They approved of her home-blended formula but suggested boosting calories with Resource Just For Kids and perhaps making it even thicker and using a syringe. They liked what I told them about our home therapy. I finally got someone to see what I was talking about with Ainsley's tongue. She doesn't ever stick it out beyond her lips. I got some good OT tips to help with that which may help make it easier for her to eat when she has better tongue control. I see a twirling lollipops in Ainsley's future.

After these appointments I was able to find my friend Suzanne from the trach forum. It was really great to meet her in person even though it was an awkward time to do it, since her son was in surgery for an LTP. Still I hope my presence helped pass some of the time while they waited. It brought back memories of Ainsley's cranial surgeries. I was a little disappointed that Ainsley and I didn't get to meet her son Parker but this week went by so quickly. There were others from the trach forum here, that I would have liked to have met but there just wasn't time. As it is I'm not sure how I'm going to get packed.

When we got back to the room I fed Ainsley by mouth again, and by this time she was so hungry she was eating greedily. She actually lunged for the spoon repeatedly and she completely closed her mouth around it (maybe it's a magic spoon, I'm bringing it home). So I hope she'll continue to eat after I resume her normal feeding schedule. It does make me question everything we're doing. Clearly the one thing that has changed that could cause such massive improvement in her eating skills over the last 4 days is that she's HUNGRY. At the very least it gives me hope that she will get there one day.

I left her on the bed with her head toward the pillow for a nap after having such a long day and TWICE she moved completely sideways. Once she even rolled onto her back. Luckily she didn't roll off the bed. Look out!

All in all I'm glad we came. I think things will turn around for Ainsley even if it is slower than I would like. These small accomplishments that Ainsley has made this week that others take for granted in their children everyday like clapping, taking a few bites of food, or rolling over, they give so much hope to us for her future. We will love her no matter but it would be so nice to see her path in life get a little easier. We are looking forward to coming home.