Neurodevelopmental Pediatrician Visit

We had the long awaited appointment with the director at Ainsley's therapy clinic today. He is a neurodevelopmental pediatrician so he knows a lot about the development of children with brain differences. He saw Ainsley when she was 2 months old but was unable to give much of a prognosis due to her age and the extremely rare set of conditions she has. We thought perhaps he would have an easier time now that she's started crawling and doing so much more. Over all it was good. Not surprisingly there wasn't a whole lot to be learned. He spent an hour going over her complex medical history, observing her playing on the floor and discussing his impressions of her. Her team of 4 therapists all attended the appointment to hear what he said. They played with her on a blanket on the floor while we talked to the doctor. He said that in cases like Ainsley's it can be difficult to give much helpful information. Since we already know a lot about her various conditions there isn't a lot additionally that he can tell us. Especially so because her conditions are unique to her and there aren't other children like her to compare to.

He was highly encouraged by the progress she's made lately and hopes, like we do, that she will continue to amaze us. He said by what he sees he thinks she will eventually walk! Of course that isn't a guarantee. And we don't know how many months or years that may take.

He said he sees in her intent to communicate and that he believes she will continue to learn to communicate on some level. He recommends continuing to teach sign language and work on using PECS. Of course the fact that she is unable to produce sound due to the trach will be a major deterrent to actual speech. But if her airway opens up enough to allow her to use the PMV (speaking valve) more that would help maximize her chances.

He didn't really get into issues of cognition. I think that will reveal itself over time but is very difficult to predict in children at this age and in situations as complex as Ainsley's.

He is willing to take her on as a patient at Children's. And he said it's great we're already "plugged in" to the medical community and services. The more great doctors on her team the better. She will continue for a year at the clinic and will then move into the Seattle Public School system at age 3. We will start learning about this transition in the coming months. There is a special education program at a local elementary school that would likely be the best fit for her. There are special considerations due to her trach but I am trying not to worry about that yet. But I know the time will pass quickly so it is on my radar. I can't believe Ainsley is approaching her second birthday next month!

I have been working with these people for a year and a half and know how fortunate we are that they are working with Ainsley. Steve has met some of them at our home but this was his first visit to the clinic. He was very impressed with the facility and their style. I think they all love Ainsley and it shows. The fact that they can really see their effort in her progress I'm sure must be rewarding. She has overcome so much and with such a fabulous attitude. Ainsley truly has a way of inspiring people and making friends everywhere she goes. As her mom she even makes me want to be a better person.