Apr 24, 2013

Modernizing & School Visit

I think I might have mentioned that my cell phone was a casualty of a busy therapy day six months ago. I was struggling to manage Ainsley in her wheelchair, with all our therapy gear, over the curb after therapy(no handicap access where I parked) with my purse looped over the handle of the chair. My purse fell off the chair and little did I know my cell phone slid out of the outside pocket and under my car.

That night Steve and I were going out to dinner for our wedding anniversary and I wanted to make sure I had my phone, but I couldn't find it. So I called my number and someone answered. I was shocked to learn it had been found in the therapy center parking lot. I'd RUN OVER IT WITH THE CAR and the glass was crushed. We picked it up that night and sure enough it was a MESS.  Amazingly it continued to work.

The phone was a cute red Razor that Steve and I bought during Ainsley's 2nd cranial reconstruction surgery when she was 9 months old. We were long overdue for new phones then too and since it was a long surgery we had time to kill. I took a picture on it when we got it and the kids are so little. Ainsley was still in an infant car carrier.  It's been on my screen ever since. In some weird way it made me kind of sad to replace it. Plus I loved that it was so SMALL. And CHEAP. (We were paying $60 after taxes for 2 phones.)

Steve works in the tech industry so he's been bugging me that we really needed to keep up with the times and get new phones. He found it embarassing.  Whatever. My phone was having difficulty keeping a charge because of the damage. After 6 months of using a duct taped phone I finally agreed over Spring Break that it was time to take a look.  We took the kids bowling so we hit the mall while we were over there. We bribed them to be well behaved with a visit to the Lego store. That was the extent of our spring break fun while others were off on fancy trips.

I was surprised to find it would have cost me the same amount to buy a non-smartphone if I didn't sign a contract since the phone cost isn't subsidized. I didn't want to commit to 2 more years so my hand was forced and we did it. Because of Ainsley's medical conditions I need a good reliable phone so the nurses can reach me at all times (& the schools too for the other kids). I hate to spend so much more money each month but knew it was time. We're fairly techy people. I'm a blogger after all.

I was pretty disappointed in October when we paid to unlocked Ainsley's communication device, so it is a fully functioning Galaxy Pad, that there are a fraction of the apps available.  Most of the super cool speech and language apps are made for Apple devices ONLY.  I got an Iphone5 so now we can download those apps and let her play them on my phone. Ainsley had her IEP last week and I was recalling how at one time we weren't sure Ainsley would ever be able to use a touchscreen, especially a small one. She could barely point. Boy has she learned! It's amazing. I got a Speck Candyshell Case and a military grade screen protector, but I'm not sure if that means it's "Ainsley Proof".

The other cool thing about the phone is that we have a Sonos System and I can actually control the music player through my phone like a wireless remote. I love listening to music and I need to do it more. I've been having fun customizing my own Pandora station. Technology is amazing.

You all know I have a big digital SLR camera. I'm kind of picky about photos but lately I've been pretty impressed with some of the phone pictures I see people taking. Usually I always carry around a pocket sized camera in my purse, but I might stop doing that if I like the phone pics and video.

Speaking of which I took some pics and video with my new phone at the school last week that I want to share which is kind of the reason for this post. (Also for my friends and family who read the blog I kept the same phone number and now you can text me if you need to.) Now to the good stuff, ie. pictures and video.

Our nurse needed the day off so I attended school with Ainsley. It was enlightening. Let me just say that nothing is too small to be included in your child's IEP. I have made some requests.

I was surprised to find that Ainsley is doing simple math. The method of instruction really means they are counting.

The instructor helps Ainsley write the numbers. (She is not yet able to write.)

PE was eye opening. I had no idea that the kids were using so much of the gym or that Ainsley was moving around so much and so quickly. I sure hope the nurses are able to keep up. I let her get away from me to take this picture. She loved the giant balls hanging from the ropes. We tried to keep up as best we could, hopping, skipping, doing push-ups and situps.
It's tough when you are differently abled.
They have some quiet time while they also watch educational videos at the same time that the teacher instructs through song. I think it's a bit much for Ainsley all at the same time, but she was very focused on the play at least.

During PT she rode their Rifton trike to the playground.
 We're still trying to decide what to do for home. Now that the weather is better it's back at the top of my to-do list. A new Rifton (like the smaller and older model shown in the picture) costs $1,400. Since we didn't raise that kind of money we are considering alternatives. The money is safe, so if you donated, don't worry that we spent it. I want to make sure whatever we buy lasts for the next several years. Doesn't she look cute?!

She can hang (by herself) for about 20 seconds.

She's still a bit scared of slides but did it anyway.
I saved the best for last. Check this video out.

I hope you enjoy the rest of your week. We have a pre-op appointment for the Botox Procedure (it's procedure because it's been awhile since Anesthesia has seen Ainsley) and a Pulmonary appointment tomorrow. Evie has a friend visiting this weekend. And there is something else going on that I can't talk about. I'm sure the days are going to fly by. Think good thoughts for us for the procedure on Monday and I will update the blog afterward.


  1. Susan,

    Ainsley looks SO good!! She is making such remarkable progress. All the hard work on your part (and Ainsley's part) is really starting to show.

    I love the iPhone camera. I never use my Canon Rebel anymore because, as far as I'm concerned, the iPhone pictures are just as good, or better. I would recommend downloading the Camera+ app - it has great filters and other edits that allow you to create really neat pictures.

    Your post made me happy -- things seem to be going well for you right now and enjoying the moment is something you definitely get and seem to be doing.

    Love ya'

  2. Yay for your new phone! Now I can text you? And how great it is to see how awesome Ainsely is doing at school! She was really moving in that video! She looks like she's barely being supported by the walker. Wow!

    Go Ainsley!!!