Jun 4, 2009

On the Verge

Of a nervous breakdown?.....maybe. But no really, I think Ainsley is on the verge of something. Tuesday was a record shattering day. She learned to climb stairs, crawl down the ramp, climb over a stack of pillows, get down off a wedge, made a successful choice using the two choice output device, followed the elevator song during therapy with Caroline. Then later that night she managed to crawl by herself up onto Adrian's bed to say goodnight. She's been working on this for a few weeks but this time she was able to do it on her own. Look how happy she is.

Then later that same day during dinner she surprised me by actually drinking close to an ounce of unthickened milk. (I have SimplyThick thickener packets on order.) Usually after one try she would stop since it's hard for her to control thin liquids. This time she kept going. I've long since learned that mealtime is a lot more pleasant for all of us if I don't push her to eat. We provide the opportunity, she is in control of the eating. She loves meal time. She'll actually get upset if we don't give her food, a drink or a spoon. The actual eating progress is slow but at least we have a good foundation of a healthy relationship to food and mealtime so when her body is ready she will do it. You can see she loves to play with it. She did seem to enjoy tasting the spaghetti sauce and even put a noodle in her mouth without gagging. Didn't eat it but small steps, small steps. I'm looking at the prize off in the distance.

And yes she drank but I didn't say it was neat. Look at all that milk she spilled on her chest.

At one point when the kids went upstairs she decided to try to go up herself. I heard her fussing in her quiet Ainsley (no voice) way and came to the rescue. I was thrilled that after climbing the stairs by herself earlier that day that she built up the confidence to try it at home. Obviously this is highly dangerous. Darn it the baby gate has to go back up. Of course I'm actually thrilled at the inconvenience.

Today we had Ainsley's final IFSP at school. She started therapy with them when she was 4 months old. I almost can't believe it's been so long. What a journey. I honestly thought she would progress quicker in the beginning. There were some things she did pretty well early on. But then she had cranial reconstruction surgery, a g-tube, hip surgery and a cast for 5+ months and a fundoplication surgery. Some of these slowed her down. But I've also come to recognize that things are harder for her due to her cerebellum malformation. We set new goals for the coming period and I'm excited to see what she will accomplish in the next 6 months. I've come full circle from fearing that she would only be able to walk with the assistance of a walker to being really excited about the walker. Maybe that says a lot. Especially because in the past few days she's really started to lift her legs up high. She is ready! So today was to be a great day. The day she finally got to use her new walker. Here it is.......

Yeah, it's a box. They forgot to assemble it. Disappointing to say the least. But it's looking like we'll get it tomorrow so cross your fingers.

I was excited to see how she would do with feeding therapy today due to her success last night and it was pretty good. That's the famous HP sauce on her NUK. How she can eat that in the morning I don't know. I think she can't taste much and that's the proof. She is trying more. It really helps to see the other kids eating. Positive peer pressure.

Daddy stayed to watch what Ainsley does as school. It was so nice to have him there. She put this puzzle piece in by herself. Another first!

Lining it up all by herself.

And it's in! Yea!

She loves her "my turn" button. Teacher Holly said not to restrict her use of it since she is learning to use her "voice". She must push it 50 times during music class. I guess it's her turn to disrupt the class. Actually everyone things it's pretty cute and I think a lot of the kids want their own button.

Then she finished off the day doing the elevator song and actually put her arms up and down once. That was quick progress. We'd set a goal of participating in music time on her IFSP just this morning. Hopefully she'll keep it up.

Stay tuned to see what she does next. Personally I have no idea. I've always said she keeps me guessing.


  1. Awesome all the way around! Wish I could meet you for a drink to celebrate.


  2. Wow! What an awesome couple of days Ainsley has had. She's really taking off! I can't wait to hear what she does next!