Jan 18, 2013

Happy January!

The first week of the new year I had withdrawals from my Happiness Photo Project. They say it takes somewhere between 3-4 weeks to 66 days to imprint new habits. After a year it was ingrained in me to look for and photograph the things that make me happy. It made me a little sad to stop at first, but another week or so later I am ready to move on to new things, and think of it less and less. Which is really too bad in some ways.  

It has been cold here. Our climate is normally quite mild but this year everything has been frozen. I took some pictures while I was entertaining the thought of continuing my photo project another year. I'm not but I do have a couple photos I want to share.

I Love It When a Dusting of Frost Covers the Ground Turning Everything White
Or Walking on a White Lawn All Stiff and Frozen Solid
Somehow we didn't get snow despite the long cold spell but it still looks like a Winter Wonderland in our yard. The neighbor's yards are less white, confirming that we are more shaded and get less sun. There is an annoying spot on our walkway that is lower than the rest. A square of slate split and broke off, leaving a dip which collects water. My intention is to re-bond it but we never seem to get to it.  It forms a puddle most of the year and when the temperatures drop, ice. When the kids come home from school they like to stand on it and "skate".
It's like the world's smallest ice rink. I like it more than when it's not frozen and they stop to stomp in the puddle. LOL. Some day I'll miss it, I'm sure. They'll walk around it and suddenly I'll be sad. I wonder what age it is when puddles cease to be something fun and become an annoyance?
I've been intending to write a post all week but each day I set out to "just do a few other things first" and then before you know it the day is over. A huge contributor is that Steve is in "crunch"at work again. He's even busier now than he was before the break. So now, even though the kids are in school, the second Evie comes home (then the other 2 about 40 minutes later) I'm taking care of snacks, homework, then dinner, tube feeding, cleaning up and bedtime. It's worse the days we have therapy, ballet or basketball. Since (mostly) everything falls onto my shoulders when he's gone so much, I feel like I need to use my day time while the kids are in school wisely. I know I should (sometimes) put off the tidying up, errands, shopping and returns etc. but it's not easy for me to relax and when I know I have so many things that need to get done. 

After a week of crunch Steve (& the whole company) was told he had to work 12 hour days, from 11-11, 6 days a week. In reality there have been many periods over the years that he's worked that much or more (he's at work by 8:30 unlike the majority of the employees), but he would usually spread it out so that he could be home sometimes for dinner.  Giving us some semblance of a normal life even though many days of the week he'd work 16-18 hours. Crazy. Completely. After years of this I'm tired. He's tired. The kids sadly have once again come to expect their dad to be gone and jump for joy (literally) when he comes home. Ainsley signs "Daddy" and looks at me questioningly. If only she could speak, I think she'd say "Why's daddy home?"  He does see them in the morning before they go off to school but many days that's it. At least they have me at home.

Since Steve just started working for this company in November we are hoping that when this game is done things are very different. I find history has a way of repeating itself. So I will not be holding my breath. I try to remember that he could be working 2 jobs just trying to squeak by, like some dads do. Or he could be a philandering dad. Things could surely be better but they could be worse. It's all about perspective and finding your inner Pollyanna.  Raising children is demanding, and a raising a special needs and medically intensive child is extra demanding. I find if I start thinking how unfair it is I become very cranky and that does none of us any good. Life isn't fair. Period. For the time being I have no control over our situation so make the best of it I must.

Ainsley picked up a cold this week and passed it on to me. It was minor. Then I made the big mistake of doing 5 hours of cleaning (seriously my house needed it, yes I could have put it off...again), after the homework/dinner rush I shuttled all 3 kids to Evie's ballet studio and Target. I was wiped. Then I was sicker the next day but ran a full day of errands and I ended up making myself really sick. We must respect our bodies, listen to them and not push them too hard or otherwise pay the price. I'm old enough to know better. I just couldn't stop myself. On the positive side, now I'm sick enough that I have to. Maybe I'll even finish this blog post.

Thankfully Steve came home tonight to take Adrian to basketball practice. I didn't get a chance to tell you. They assigned him to a team that practices 12 miles away. Ugh! You better believe I complained but to no avail, there were no closer teams so my choices were to make the best of it or to quit. We were going to. Adrian cried. He'd been practicing a lot. So we decided to tough it out even when it wasn't the best decision for the rest of us. It's a short season at least. After basketball practice finishes at 8:00 Steve will drive 40 minutes home and then head back to work. At least I won't have to pull to the side of the road to suction Ainsley, or sit in a room full of staring children for an hour (yes they all still stare at Ainsley, I just don't let it get to me anymore.) The first week of practice was the worst because they accidentally double booked the gym and there was a large junior girls team there in addition to the boys. It was overwhelming to sit in a 3 foot isle next to 30 bouncing balls.

Now that it is a new year it is time to look to the future (while remaining present of course) and make plans. I have come to recognize that Ainsley will be who she is. I cannot know what that means. It is a very fine line between accepting this simple truth and helping her be the most she can be. I don't know what she is capable of. And so I must try things and see where we get.
  • In the Spring we'll be trying Botox to her vocal cords and see if that helps her. (No plans to decann anytime soon.)
  • We are working hard on feeding. See below.
  • We are increasing use of her communication device.
  • We are continuing with the very expensive and not covered by insurance Hippotherapy, hoping to achieving standing balance.
  • I need to buy her a big bed.
  • We probably need a new wheelchair very soon.
  • We are..... Potty training.
That is my big news. Katie from the trach forum sent us a talking button. I bought a necklace to hang it from and she wears it to school so she can push the button to say "I need to use the potty." any time throughout the day. Of course when she is at home she takes it off.  We bought some Hanna Unders/Trainers that are too small but the biggest I could find after hours of searching the Internet. Luckily she has a skinny butt. With any luck she'll transition quickly and be ready for normal underwear before she outgrows these.

Here she is getting "the big talk" the night before the transition. She said she wanted to do it.  Of course she says yes to every question we ask. So far it's been 3 DAYS she's been in them ALL DAY. I wish I could say she's been 100% dry. She hasn't. But she has not been wet enough to require a change of clothes until tonight at bedtime, we were just a little late getting her there and didn't want her to sleep with a wet spot on her jammies. I just hope we'll get there in the end. A few accidents are to be expected. She does well at school where she has one-on-one attention all day. What I don't know is if she'll ever get to the point of taking the time to come ask for help, EVERY TIME. Which is what we need. Remember she can't even stand so every trip to the bathroom requires help. But if we don't try we'll never know, and I'm afraid we'll have missed our window of opportunity. I don't want to change adult diapers.

We've been working with her Nova 7 device trying to provide opportunities for her to use it to communicate. Mostly to make requests. I find that if I build the activities into our routines they are more likely to get done consistently. Every day when the kids get home from school they sit down to do their homework and have a snack. Awhile back I started having Ainsley sit at the table with them for homework time. This is the time of day that I try to provide a mixed texture snack and oral motor therapy. She also gets a water bolus through the g-tube. Then I leave her to do "homework" which is often cutting with scissors.
This day she navigated herself to the art page to request markers.

She was so pleased when I gave them to her. Hopefully getting what she wants will motivate her to use the communication device in new ways. We are starting to see more of that.
We've been working with an SLP. Primarily on feeding. We do the same work we do during therapy at home as often as possible. We've been using jaw blocks, Beckman lip exercises, chewy tube reps, tongue depressions, blowing, working on textures and crunchables. For some reason she is a bit rascally at therapy and actually performs much better at home. I think we're going to be ready to graduate to more oral speech very soon. I hate sitting through therapy I could be doing myself.
Here we got her to cooperate by kissing the vibrating fish's big red lips. Too funny!

These whistle straws are great.
We swipe the yogurt in her mouth on the cheeks so she'll use her tongue to swipe it away.
She will self-feed some, if you don't mind a mess and the much slower pace. She'll eat more if I'm doing the spooning.
Her eyes have been opening a bit more lately. You might notice in the pictures. With the last surgery we saw some improvement at about a year. We are just past the 6 months point, so maybe there is hope yet that the Frontalis Sling was a good thing.
Did you know Ainsley likes to take pictures? She begged for the camera so we let her hold it during the rest of therapy but then she wouldn't give it up. Today I deleted hundreds of pictures she took of the computer. We are dangerously low on disk space even though we have a terabyte.  I thought you might like to see a little of her "work".

Her therapist.
A self portrait.
 Evie reading in the car. Yes all the kids go along.


It was weird to see pictures of me driving.

Then Evie borrowed the camera to take this shot which is so cute and shows just how much fun she was having. Oh my gosh I love this girl SO MUCH.
I had more photos and things to write but since my nose has been dripping the entire time I'm typing I'm going to save it for another time.  I'm not sure how much time I'll be blogging in 2013 but I hope you'll keep checking in on my happy girl. 


  1. that's amazing whistle straws are cool and that must've been fun

  2. Susan....
    I discovered your Blog the other day, and could not get sweet little Ainsley Rae out of my mind!! ;)
    I, too, was born with craniosynostosis, among other birth defects. I am now 29 years old. I love, love, love to write!! I do live with learning disabilities. And I have a huge heart toward children who are "special needs". ;-D
    Ainsley is beautiful!! No, wait. As my phrase goes, she is Beautifully Unique!! ;)
    And, wow. What an amazing example she is of pure, unbridled happiness!! ;-D
    Keep posing. I want to watch Ainsley grow up!! ;)

  3. So many thoughts you have mirror my own. Loved this line: It is a very fine line between accepting this simple truth and helping her be the most she can be. SO TRUE! And as you know, I am totally with you on the blogging vs. cleaning thing. It's the same reason why I haven't blogged all week.

    I hope you're feeling better now. With Steve gone as much as he is, it must really, really suck when you're sick.

    Healing hugs,
    Christy xo