My Girl, My Girl, My Girl Talkin' Bout My Girl

I've got sunshine on a cloudy day....

Baa Da Ba-Da Ba-Daaa.

I love that she can be like this after everything she's been through. Just one week after having her eyelids cut apart, and massive plates removed from 3" incisions on each leg. No pain meds. Acting just like nothing happened.

Speaking of the plate removal....her legs are both swollen. She looks hippy for the first time in her life. The left side is oozing so we had ortho take a look today. They put steri-strips on an area that is coming apart. I still vote for nylon sutures. This is why. And look at all the blood and goop that is stuck underneath that dermabond. Ick. I can't believe that's not an infection risk.

 

We went in today for a VSS (Video-fluoroscopic Swallow Study) because I want to work toward getting Ainsley eating orally. She's been getting tastes since she was about 6 months old. I pushed, I've backed off. And we have made little progress. Though she has been showing more and more interest in food. In October I started feeding her orally before every feeding and she's averaging 12-16 spoonfuls. One day even taking 25 bites. But she fatigues. You can tell and she starts to refuse the spoon and ask for the tube.

Today's VSS results were what I expected, essentially no change. Other than that she is able to handle more bites than in the past. But she is still at risk for aspiration due to delayed timing of the swallow in the laryngeal phase. So we'll continue to follow her cues feeding her purees and thicken her liquids, watching for signs of aspiration. My hope is that things improve when the trach comes out.

Ainsley has been through a LOT in 4 years and has a fear of medical equipment. But today I was able to reason with her that the big thing on the arm that they squeezed in next to her was just a "camera". "They're going to take pictures Ainsley. Smile for the camera."  Then she was fine. It's so awesome to be able to reason with her and know she understands.

She had a fantastic time putting princess stickers on her shirt while we waited for the next x-ray, a shot of the soft tissue of her airway and soft palate. I do want to ask why the techs can never get the x-ray right the first time. Double the radiation exposure. Grrr. Anyway, we are hoping it may reveal what may be going on with the sleep apnea. Our follow-up with Dr. I is on 12/28 and we'll review the results with him them when he sees Ainsley to see if the Prevacid has helped reduce any swelling of her vocal cords. 6-8 weeks flies when you're having fun. Kidding. 

The swelling of Ainsley's eyes is MUCH better but still has a way to go. The jury is still out on what the final result will be to her appearance. I am still fighting daily against the urge to judge it, particularly when I'm cleaning her eyes. I know that even if the results aren't what I hope for that she will be okay. Like the title of Ainsley's blog, Happy To Be Me, that she is and I know she will always be. And I will hold onto that.