Aug 15, 2012

Ainsley Stands! Loses a Tooth and More!

Yep. You read that right! I've been reading Kids Beyond Limits and made a few subtle changes in the way I interact with Ainsley. It's a subtle change that seems to have had amazing results. Right away she is trying to do more things by herself.

Like in the morning when I found her doing this:

Believe it or not she has never tried to get out of the crib before. Still, I've been asking Steve to take the rail off for months. But we're busy with twice as much to do as we have time. We need to think about bed options. But I digress...

Back to standing. In the late afternoon I took her into the family room to do some home PT and stood her up to do a little balance work. What she really wanted was to watch a show on Netflix. I knew that but we don't always get to do what we want in life. She was really wanting to get her point across but I was pretending that I didn't notice. She picked both her hands up off my shoulders and stood long enough to sign "DVD".  I couldn't believe it, and when she stopped I shrieked. Adrian came running and she did it again for him. It was SO exciting! Evie came to see but then the phone rang. It was Ainsley's pediatrician calling about something important so I had to take it. We tried to get her to repeat the fete for Evie and she did but only for a second and I caught a picture. I tried to get it on video so Steve could see later.

What a momentous occasion!

Then a bit later she did this just to show off.

I wish I could have a regular coffee table but I have a plastic "therapy table" instead. We've now graduated to doing the BBB(Beanie Baby Basketball) standing. She's actually getting quite good at throwing and got 13 of them in the bucket. Usually she kneels but we were trying something different. Standing between the table and sofa will be an ideal place for Ainsley to practice balancing on her feet but she doesn't yet have enough balance to throw without stabilizing. Adrian is such a good helper. Evie too.

She also tried to transfer to the toilet and get on and off by herself and get in and out of the bathtub by herself, and it's only been a week of this new approach.

Earlier in the day I took some pictures of Ainsley because she's due to lose her front teeth. They've been loose for 1 1/2 years. After the "photo shoot" I pulled the loosest. So these will be the last photos of her famous smile. Though it's getting a little wonky as the teeth have moved out of place, being so loose. She still can't smile and open her eyes at the same time so these are as good as it gets. I'm hoping she'll have nice adult teeth.

I'm not a huge fan of these dreamy style photos with the sun effect, but this one is real, not PhotoShopped and cute none the less.

Little rascal!

Trying to hide behind her dress.

She's so stinkin' cute when she's "mad".

I think this one is my favorite even though she is on hands and knees.

The front two teeth will probably be coming out any day.

I hope that we'll see more standing over the next few weeks. Our secret goal was to have her standing (and maybe even walking) by the start of school.   Today at speech therapy she stood for the speech therapist and signed DVD just like yesterday. It felt like about 5 seconds but maybe it was only 3. I am hopeful.

Though I've written briefly about it in my happiness posts I also wanted to give an official T&A (Tonsillectomy & Adenoidectomy) update. Ainsley was able to stop pain meds the second week post-surgery however the drool continued which meant she wasn't swallowing. There were puddles of drool all over the floors (I did a thorough mopping Monday night).  On day 15 it got much better very quickly. I guess it was no longer painful and she forgot it used to hurt to swallow. Over the third week she gradually resuming some "eating" (i.e. tastes). She's been able to wear her cap to go in the pool (with a life jacket and floaty ring) this week. With a trach it's the cap or no pool, I've left the choice up to her. I've felt bad ever since Dr. Cotton and Dr. Wood said her airway is so bad "she shouldn't be able to cap" and since they upsized her trach (i.e. we went up a size to a 4.0) I just didn't even want to try.

Now that the pain from the T&A is over and she's worn the cap successfully in the pool we may think about trying it at other times during the day, as tolerated. Her surgeon said the tonsils were larger than he expected, so you never know how much this might help her airway. My hope has been that it would alleviate some crowding which might eventually reduce her upper airway swelling. The difference so far isn't huge, but I think we have to give it more time before we know for sure.

Tomorrow we meet with the eyelid surgeon to discuss the results of the Frontalis Sling. We will ask him to lift the lids a bit more. It's a minimal procedure. We'll see what he says.

Ainsley starts Kindergarten next year, and due to the fact that she'll be in a special classroom she is accepted for "full days". They haven't given me the information yet, but the schools are notorious for that. We don't usually get the bus schedule until the last week and even then it's subject to change after the start of the school year. I will have 3 kids in 3 schools next year. I'm hoping for a smooth adjustment. For now we are trying to enjoy the final weeks of summer.


  1. WAY TO GO AINSLEY!!!!!! WOW! She was actually STANDING by herself!! Wow she just makes more and more improvements every day. I'm SOO proud of her! And her not having any drooling any more must be amazing. I have to tell you, Susan, Ainsley is just awesome. She is doing so well! I'm so proud of you and her. I just loved your pictures of her and Evie and Adrian. My two favorites were the one of Ainsley getting out of her crib by herself and the one of her in the sun. Incredible! I am just so proud of you both! I hope you have a wonderful weekend. From, Abby :-D

  2. Susan - so awesome to see Ainsley standing. She is so tall! I noticed the pictures with the trach out - cool. :) I really notice a difference in how open Ainsley's eye are now too. Ainsley continues to make amazing progress on so many levels. Even though they seem like "inchstones" to you because you live and breathe all the hard work every day - to those of us on the outside looking in, Ainsley's progress has been fast and furious over the last year. Many hugs and kuddos for you Susan for all you do for Ainsley and all your kids. Btw, Adrian's birthday party was amazing. You could really go into business putting together birthday parties for the rich and famous. If only you had the time and energy, eh?

    Love you lots ... keep up the good work my friend.


  3. Wow! Awesome to see her standing! I bet her progress will really start to pick up some speed now. Especially to see her trying to get out of her bed. Looks like she could be successful. We found the crib mattress to be so much firmer than a regular mattress - so when we switched Harlie to a bed, she instantly slept so much better. Way less tossing and turning.

    Love the photos - her bangs look really cute. And no trach? No wonder why she's smiling! ;-)

    Okay, that party was amazing. My parties are the complete opposite. No decorations whatsoever. Pathetic. And seeing Ainsley in ST makes me realize that we haven't been in months. :-( Must get that worked back in our schedule!

    You're awesome. Doing a fab job at so many important things. You might not get to do all you want - but you do a great job prioritizing.


  4. Wow....I loved seeing Ainsley standing!Amazing how happy a milestone can make you. She is really looking great and I can't believe how grown-up she is looking. All of your hard work is paying off! I know how exhausting it all is but Ainsley, and really all three of your kids, are super lucky to have you for their mom. The progress is so fun to watch...thanks for sharing!