Jun 25, 2013


These are images of Ainsley taken during the Videofluroscopic Swallow Study (VFSS) which today she finally PASSED!!!
Even though she'd failed the FEES when we were in Cincinnati last year and essentially nothing had changed. In fact she should be MORE likely to aspirate right now because she had the Botox injections in April that should be keeping her vocal cords more open.

First the child is put in a chair in front of the x-ray camera.

Then the SLP mixes the barium so the liquid can be tracked during the swallowing process.
They even have special cookies with barium in them. This was the first time Ainsley was able to do that. Finally all the blood sweat and tears working on oral feeding over the past 6 1/2 years pays off!
She eats the yogurt (thick) and passed.
She ate the cookie (solids) and passed(no bits went down wrong).
She drank thin liquids and there was penetration and even a little microaspiration (Likely this is caused by the increased speed at which thin liquids flow, so in other words it's kind of a timing issue. So thickening of thins is still advised.).
She did better with the thin straw than a normal straw, as I suspected (I brought my own thin straw).
And when they thickened it to nectar consistency she PASSED!
Then we had her eat the whole cup of yogurt and a graham cracker and then drink and eat the barium yogurt again to see if it changed with "fatigue". Her swallow still looked good but I've been working hard on feeding so I think her point of fatigue is much higher. In other words I think she is still at risk when she gets to a certain amount of swallows but it didn't happen during the test and that's GREAT!
The SLP was great. She really understood the history, complexity and I could tell she knew exactly what my goals were and that I know what I'm doing. She answered questions about past findings: the vallecular space no longer looks small, her lingual tonsil tissue did not seem to be an obstruction (great to see), her swallow looked surprisingly strong for a kid with hypotonia (though Ainsley's tone isn't really classic low tone). There isn't a lot of residual left in the throat as there seemed to be in the past, meaning she's clearing it all much better. 
The images are projected onto this screen which you can view as it happens (hard to see here but not in real life).  Then afterward we reviewed the images and video together.
What all this means is that it's likely we will get the green light to transition Ainsley to oral feeding. This is a hard road for kids who've been tube fed. I expect it to take time.
And for there to be resistance.
But this time I can push her harder because I'll have the support of her doctors.

I made 12 bean soup (I had a ham bone) and cornbread for dinner.

Ainsley ate a couple bites of the cornbread, some of the veggies, a piece of ham and tried to drink milk out of a glass (no straw). I pushed but not too hard. We don't want her to regress.
When I think about it I nearly can't believe she learned to eat table food this year!
....or that now she has the clearance to increase quantities. Unbelievable. WOW! Just when I'd nearly given up!

After our soup dinner it rained like crazy and totally felt like a FALL day.

Except that it was warm enough that Evie and Adrian went out to run around and play in the rain. It was so cool. But I was happy to stay dry inside with Ainsley who wanted to go out until I reminded her she'd get wet. Good choice Ainsley.
Our pulmonologist was able to get a rush reading of the sleep study by the sleep doctor and he called with the results Thursday. It showed that Ainsley still has severe obstructive sleep apnea even with the Botox(not too surprising though I was surprised at the severity on Botox). The CPAP road would likely be a hard one (also not a surprise). Now... Ainsley passing the VFSS, that is kind of a game changer in my book and I'll explain why in another post.
I'll be e-mailing Ainsley's doctors to discuss all this. It's complex and the best route isn't necessarily clear as far as an potential plan to get the trach out. I'll be sure to post once we know what the decision is.


  1. Susan this is amazingly wonderful news! Way to go Ainsley!!!!

  2. Great news!! So happy for you guys! Love you Ainsley, what a strong girl!

  3. yay, this is HUGE and what a milestone.
    congratulations to you and Ainsley.