Update on Future Hip Reconstruction Surgery

I've been much dreading today's appointment with the orthopedic surgeon and figured nothing good could come of this appointment But the day turned out to be rather pleasant (aside from the 110 degree heat). We ran into a friend we hadn't seen in quite awhile as we were going in to clinic, so that was fun. My how the girls have grown.

AND...The doctor seemed to have changed his view a bit. We are no longer talking about IF she needs the hip reconstruction and double osteotomy but rather, WHEN she needs it. Why is this good? The only reason he would not have wanted to do this surgery would be if we didn't expect her to ever do much walking. This time he didn't even bring that up as a possibility so that must mean he is more optimistic, right? Unfortunately what it does mean is that she has a massive operation looming in her future.

The good news is that her hips are not popping out of place despite the shallow sockets and that means surgery can be put off for a bit. We will return for x-rays in 6 months and so long as things are still in their proper place we will discuss a surgery plan for sometime before she turns 4. As he said there is no good time to do this surgery as it is painful and requires a long recovery period after getting out of the cast/brace. Is there a chance she may not need it? Very, very small. We'd have to see some significant change in the next 6 months. Based on her prior x-rays that would be a surprise. Still I am happy because I am not expecting my child to have limited mobility in her adult life AND I don't have to start planning for a surgery this fall. Having been through a hip surgery (double reduction), spica cast, brace and then recovery in the past I'm not eager to do it again. Finally a time when waiting is GOOD.


Ainsley stood at the table with her nurses help so she could play with Evie and Adrian while we waited. This was the first time she could join them. Her standing (with support) is improving.


Ainsley and Izzy. They aren't quite sure what's up and I'm pretty sure Ainsley thought she might fall over. But it was so great to see them standing together even just for a second.


Today's x-ray. You can see the hip sockets are shallow.

Beating The Heat

How do you beat the heat when you are a Seattleite and used to mild weather? When you have a child with a trach that suffers a bit more than the rest of us when it's hot because of having to breath through an itty bitty tube? You get in the pool of course! I've never been a big fan of the big ugly blue backyard pools but Steve convinced me to buy one this year. I have to admit that it's been nice in this heat. Yes it hogs the patio and is a bit of an eyesore but the kids are loving it.

Ainsley really does love the water but to be in it she has to be capped. She seems to understand that and tolerates the slight extra work of breathing to get to play with Evie and Adrian in the pool. Of course I have to be in there with her every second. I was thrilled to discover the pool is perfect for working on walking because the water supports her body a bit. So we've now added that to our "therapy activities" that I try to disguise as play.


Here we are working on balance and having her stand. That look says it all.


She looks kind of miserable but she really was enjoying this and continued to chase E&A around the pool.


Ahhhh. What's better than hangin' with your brother and sister in the pool on a scorching hot day?!

Validation!

It really wasn't my imagination about Ainsley's change in cognition. Ainsley's speech therapist tested her today for their recommendations to the school district for when she turns 3 and she said that she was blown away by the change. We're actually afraid people aren't going to believe it's accurate. Only two months ago we were still working hard on word recognition for a few simple items. In that time Ainsley increased her receptive language age equivalent by an entire YEAR (now at 2 years 1 month)! Jenny says she has never seen a kid do that EVER. Way cool!

Cognitive Gains

Over the past month or so Ainsley has made great cognitive gains. I promised I'd write about them so here we go. It's been very exciting! Her newest accomplishments:

SAYS NO! - I'd been reading her the Patricelli book No No Yes Yes every night at bed for several months and would physically nod her head back and forth and up and down with each page. Eventually it paid off and she learned to nod her head no. Even more impressive is that most of the time she can now answer a yes no question appropriately. Such as, "Ainsley, do you want to eat this?", holding out a spoonful of pureed food will immediately get an emphatic head shake. NO! or "Ainsley, do you want me to take out your trach?", again will get an emphatic head shake. NO!!!! Just like a typical going-on three year old she is also good at ignoring me when she doesn't want to hear the question. When the answer is yes we still get a big beautiful smile from her, like when I ask "Ainnnslllllley, did you poop?!" when I can pretty much smell it and don't really need to ask. She won't nod but just smiles, meaning "Yep. Sure did." She hasn't mastered the yes nod, but I'm sure it will come eventually since it's developmentally typically to learn no before yes.

PICTURE IDENTIFICATION- She has also learned a number of words. How do you know when a non-verbal child knows a word?.... You quiz them with flash-cards. A few weeks ago I noticed she was gesturing toward the correct image when asked to find an object in a book. Now she is able to get pick the correct card when you hold up two cards and ask "Which one is the _____?" for virtually all the cards in the A-Z flashcard set. Including the friggin' X-ray card (although maybe she should know that one she's had so many)! Seriously I know it's hard to believe and that is why I have her perform like a trained seal in front of anyone unfortunate enough to be in our presence in the proximity of the cards. Seriously, it is FANTASTIC! I am so proud of her and she is so proud of herself. Normally kids pretend they don't know what you're talking about the second you try to get them to "perform" their new accomplishments in front of other people. But she's so proud she grins from ear to ear and is happy to show what she knows.

BODY PART IDENTIFICATION- She can now point to many body parts including the harder ones like tongue, teeth, hair and toes. Sometimes she gets confused but she gets it right 85% or more of the time.

FOLLOWS INSTRUCTIONS - For a long time she's followed simple instructions like "Come here. " or "Give me that." But last week I asked her to sit crisscross apple sauce (her PT doesn't want her to stretch out the ligaments in her knees) and was completely shocked when she adjusted her position and got off her knees and CROSSED HER LEGS! For those of you who are not hip to today's PC terminology crisscross is what used to be called sitting Indian Style.

PRETEND PLAY - In the past few weeks she has developed an interest in dolls and is even feeding the babies with a bottle or spoon.

It is such a great feeling to see her start to put stuff together. I am so excited for her and it gives us such hope. I really truly have no idea what she is capable of anymore. She amazes me almost every day.

The look on Evie's face says it all. I guess she didn't know Ainsley could do this.

The cards Evie are holding are all the ones she got RIGHT.

Vacation to Lake Chelan

I've been feeling bad for neglecting Ainsley's blog. We went on vacation to Lake Chelan, WA for a few days and I came back with renewed interest in completing some projects around the house that have kept me busy.

But I wanted to share some of the highlights of the trip with you before it's ancient history.This vacation was great for Ainsley. And all of us, really. She has been making some good cognitive gains lately (which I'll write about another time) so it was great for her to spend so much time around her brother and sister. She is an observer and we found she really wanted to be with them and do what they were doing.

Look at her watching Evie to see what to do with the Strawberry Shortcake dolls. Evie just wanted her to stop messing stuff up.


She insisted on being put on the ground under the picnic table with the big kids who were trying to get away from the bugs and sun. I'm sure she was trying to figure out how she could hang upside down too.


Then she even put a french fry in her mouth while they ate lunch under the table.


As we played putt-putt golf on Father's Day she attempted to throw her green light-up ball in the hole. Not a bad way to participate for a kid that can't stand or walk. She was having fun and played several holes that way.


Ainsley "Helping" Evie unpack. Ha. Little mischief maker. She's always getting into stuff these days. Anything left on the floor is fair game.


Caught by the paparazzi at the poolside.

She was able to wear a cap over the trach for several hours and so she was able to play in the sand for the first time in her life. Not to say it wasn't a "challenge" to keep her from pulling off the cap and throwing it in the sand. It wasn't exactly relaxing for me. But hey you can't have it all.


Another first, she went into a real swimming pool, not once but several times. As you can see she didn't like it much at first. I'm sure she was thinking "Hey! This water is COLD!"


By the end of the trip she'd really become comfortable being in the water. I think she actually asked me (with body language since she can't speak) to dunk her under the water which of course I couldn't do. Even with the cap on there is too much risk of her getting water into her lungs because of the trach stoma. Can you see how relaxed she is and how she's actually kicking her feet in the water? So cool! (And the warm pool water of the indoor pool helped.) I think she's part fish because she really took to it. Ironic for a child that really shouldn't go into the water. When we got home I put her on the waitlist for swimming classes at Seattle Children's Hospital.

She even caught a nap on the sea-turtle in the lake (don't worry Daddy was right there). Talk about wonderful.


It was a great time. If Steve didn't have deadlines at work we'd have loved to stay longer. For the FULL slideshow click this link here.

Happy summer everyone!