A little bit of everything

A sneak peek into my next three posts, whenever I can get to them…

I’ve been wanting to write several posts this fall about big things happening in Ava’s life…and our current situation really doesn’t afford me time for writing. So until I can get to those full posts, here’s a sneak peak of what’s been big in our girl’s life this fall:

1. Ava’s new AAC device is here!!!

I am really excited about this, and it deserves a full post with updates as we go. But the short of it is, I started trying to get Ava a tablet like this that will help her communicate almost a year ago. It’s finally in our hands to start using. Tonight she chose her bedtime story books with it. (I’ll put the video in the FB post, since our account doesn’t let us upload video content.) Hopefully so much more to come on this one.

2. Swimming lessons

Ava’s favorite part of this fall was probably this – her swim therapy lessons given by our amazing friend Margot! Ava LOVES the water and has been learning to hold her breath when going under, float, grip the wall of the pool, etc. We are so thankful for this. Again – needs a whole post!! I’ll drop a video of this in the FB post as well. Sadly it’s getting too cold to do outdoor lessons so we might have to pause for the winter. But seriously, this was Ava’s highlight of the season.

3. Special needs trust

After a year of work, Ava’s trust is all set up and ready for us to start contributing too! This was a big project for us to tackle, but we felt it was so important to go ahead and get all this straight now. I’ve got a lot to say about this one too. But for now, just mentioning that it’s done, and that hopefully I’ll be able to share the details soon. No cute videos for this one though – it was tedious, expensive and, well, I’m just glad it’s all set up now and we can move on to the next thing!!!

Ava is growing. Her smile keeps getting bigger and her hugs are tighter. Thanks for journeying with us, even as it’s hard for us to keep up with the outside world.

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Blending like a pro.

It was a little over a year ago I wrote this post about my early adventures in making Ava’s food from scratch instead of giving her cans of Pediasure, which was not working well for us.

This morning I went to get something out of the freezer (which is working great again!), and suddenly realized we are almost out of Ava’s food again. I make it every 45 days, but the hurricane seemed to just blow the month of September away along with its wind and rain.

I fornlornly looked at the calendar and realized that today had to be the day.

After an appointmentpalooza week (my name for weeks that include more than 4-5 medical/therapy appointments–this week it was 7)…this was not-so-much what we were looking to do today.

12 hours later, all 3 kids are in bed, 45 quarts of food are in the freezer, and my mom and I are basically ready to collapse. Poor Craig is…working.

But the great news is that we knocked out Ava’s next 6 weeks’ worth of food in record time—a little under 8 hours, taking turns. It wasn’t long ago that this was a three-day process for me. Every time I seem to figure out something new to make it go quicker, and try to make a game out of it to beat my blending times. (It used to take me 2 mins. 5 seconds to blend each quart; I was down to 1:35 today. Because I’m that awesome. And that nerdy.)

When we were without power a couple weeks ago it occurred to me that we’d avoided an extra source of stress by making Ava’s food like we do. For half of 2016 we used a battery-powered pump to feed Ava every day—a pump that must be plugged in and charged. I’m thankful for her “low tech” diet that we can give her without power, and for our big old freezer that is once again doing its job.

On paper.

What I need to do is create my OWN paperwork for Ava, where I can tell people what I think they actually need to get to know her.

The blog’s been quiet for a while.
Honestly, I haven’t been able to catch my breath much this spring to think about writing. I’ve also been writing a bit elsewhere for fun, but even that I had to quit for now, because our home is in constant chaos and it’s just too much.
Isaiah has been home for A YEAR. I really wanted to celebrate the anniversary of his homecoming this week. This year, it’s felt a lot more exciting to celebrate the date on his discharge papers—June 6—than the one on his birth certificate. But we never found space in our days to plan something, so the day came and went.
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I’ve also not written much because it’s been a pretty melancholy season for me. Putting our current status in print hasn’t felt good, and I’m not sure how enjoyable it would be to read most of the time, either.
It’s been a year that’s felt like Groundhog Day…only without the plot arch to keep you intrigued.
One task keeping me busy all year has been paperwork.
We filled out tons of paperwork for Ava’s transition from early intervention to our county Pre-K disabilities program. And they gave us piles of paperwork back, spelling out in detail how she is in the > 0.1% for her abilities compared with her peers. (Except her social abilities—that was her highest-scoring area.) The kinds of goals we have to put on her IEP are important but…well, not very inspiring. She’s growing into a lot of really basic skills right now. We are very proud of her, but on paper, it’s…meh.
For me, the worst part of paperwork is that, at times, it’s the first introduction people have now to Ava. Plenty of people understand it’s “just paper,” but I still don’t like how it can loom like a cloud. Last fall we attempted to take her to a Buddy Break—which I generally think is a great idea. As with everything, it involved a super-long, thorough form, in which I gave detailed answers about my girl. When I picked her up after her morning there, I found out they had put a movie on for her to watch the entire time. At that stage she wouldn’t even pay attention to movies…so she pretty much just sat there. I could’ve gotten plenty of friends or relatives to come over and put a movie on for her without spending an hour+ filling out paperwork.
I’m not sharing this to criticize our hosts. And that’s why I’m definitely not telling you which church it was. Because what I observed happening AROUND my daughter looked awesome. But on paper, she just sounds like she really can’t do much. Since they didn’t know her, I guess maybe they thought she wouldn’t do anything.? I was kind of confused.
Anyway, it got me thinking that what I need to do is create my OWN paperwork for Ava, where I can tell people what I think they need to know get to know her—not her feeding tube, meds and diagnoses, but her. It might sound something like this:
Ava is a bright-eyed, cheerful 3-year-old. She has long, soft, slippery hair that looks adorable in pigtails but she gets mad at me every morning for brushing it and it falls out after an hour. Her favorite book is Noisy Farm and she chooses it often on her picture cards. Sometimes grabbing a toy or making a choice takes her a little longer, but if you’re patient enough, you can learn to listen to Ava. She loves her stuffed giraffe and any other toys that vibrate or shake. Water makes her light up and laugh, and she holds the record in our home for water-splashing during bedtime. She will hold her brothers’ hands if they linger long enough to let her, and she gives great extended snuggle-hugs to her favorite people.
She can tell you what toy, book or food she wants if you give her the chance. Even though she wears hearing aids, her loss is just mild/moderate, so she can hear some things even when the ear molds fall out. She really likes music and playing with toy drums and bells. Her current favorite show is Lisa Loeb’s Nursery Rhyme Parade. Her legs are getting strong and she can stand for a long time if you help her. For her third birthday, she got a “big girl bed” and loves to sprawl out in it. When she’s in the mood, she loves strawberries, crackers and pizza, and enjoys snatching her brothers’ cups. She’s growing long legs, dark lashes and has a great smile. She’s 100% beautiful and loved.