Sep 25, 2008

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.

Sep 12, 2008

Test Results Are Negative.

The device has been put on the forearm.

Bundled up with the arms wrapped. So exhausted she fell asleep.

Removing the plastic and tape. Ouch!

Collecting the sweat pads for the lab to test.

Wednesday Ainsley had a sweat chloride test for cystic fibrosis. This would be a possible explanation for why she has brochiectasis. Although it generally presents differently. They start the test by applying a solution to the forearm and attaching the device shown. It stays on for 8 minutes and stimulates the area. They an absorbent patch is then placed on the area, is covered with plastic and taped down. Then the arm is wrapped in plastic wrap. That is covered with the sock/sleeve and taped again. They do the same to both arms. Then she is bundled up (sweat pants, long sleeves, sweater & fleece blanket) to sweat. They must collect a certain amout of sweat to perform the test. We didn't take any chances and bundled her up excessively. Fortunately they got enough, the test was done and results came back NEGATIVE. Yea! No cystic fibrosis. At the same time she had her blood drawn to test for auto-immune dysfunction. That too was normal. Hooray! We didn't expect these tests to be positive but were still much relieved to hear that the results were normal.

Sep 9, 2008

Ainsley Started Preschool

On my way to my first day at school.

Here we are.

Friendly faces to greet me on my first day.

Having fun during free play and working with her speech therapist.

Music time. Sitting in my own special chair.
Swinging in one of the big swings in the gym.

We've been fortunate that Ainsley's been receiving therapy in our home from a great clinic nearby for the past year and a half. They've been great and keeping her home has kept her healthy but her team and I felt it was time to try bringing her to the preschool in place of the home visits this fall. We were on the list for a spot and waiting to hear if it was going to happen for sure. We got the call last week. It's in her therapist's classroom and she It went really well. Since it's a birth to three center all the kids are 3 or under. She loved watching the other kids. We saw 5 of her therapists she's worked with in addition to her care coordinator. So many friendly faces were there to say hello and welcome her to school, how could she not have a great time? Although there were a few tears when she saw her physical therapist Adrienne. We're hoping its due to confusion over her having the same name as her brother. They started out playing in the gym, had free-play, music time, snack and finished up with a good-bye song. Two hours goes by fast! Here are some pictures from the day. What a big girl she's getting to be.

Sep 6, 2008


No you're not seeing things and this isn't a tricky title to make you think she did when she didn't. She really did crawl. Last night was the first confirmed sighting. She's slow, and her form is a little "unique". She won't be entering the Olympics for crawling any time soon. BUT she got up on hands and knees and moved with intent to get across the room. Her tummy was a little low but not on the floor, army crawl style, like she had been doing. Adrian and Evie have been at school all week so I think she'd been missing them. They had sat on the rug with a snack in the living room and we were getting ready to read Charlotte's Web. I think she was happy to finally be able to play with them and was curious about their cucumbers and carrots. After about 4-5 steps they moved further across the room. She continued to move toward them another 5 or so steps. In the end she made it from the shelf by the DVD's diagonally across the rug to the leather chair. I got it on high def video but couldn't post it (high def is the problem) to you-tube. BUT I caught her in action again today and she did even better! This time she made it from the living room rug to the kitchen door outside! Seriously! It was unbelievable. And I got some photos this time. It's so exciting I think the neighbors heard me woo-hoo'ing at the top of my lungs. Ainsley and the kids thought I was hilarious!

Whew! I made it from the living room rug, through the dining room and into the hallway.

Stopping to "put on" my sock. I found in the hallway. I know this is where it goes.

Forget the sock. Boy this crawling thing takes some effort and concentration!

Hey! This door is in my way!

Hey! Evie...Adrian....where are you? I made it!

Well now that I'm here how do I get down that darn step?

Video of her in action, making her way through the dining room.

The same day I found her happily sitting in the middle of the living room floor with the diaper caddy. She'd pulled out all the diapers and unfolded them. She'd also strewn the the wipe box, diaper ointments etc. all over the floor. AND had pulled several DVD's off the shelf. This isn't the first time she's taken the DVD's off the shelf, but it's usually been when we put her right in front of the DVD's while watching a movie in the basement. This time she actually had to make her way over to the shelf, across the hard wood to get to them. Usually when I put her on the floor with some toys she's pretty happy to sit and play with them. What this means is that she's starting to get curious and explore like toddlers do.