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.

Define fine

People often ask how Isaiah is doing, and I feel like typically everyone wants me to just say he’s fine, because he seems, well, fine.

Little guy is 11 months old today. ELEVEN!

You might be thinking, Wow, that went by fast!

I, however, am not.

It’s been a loooong year. People often ask how Isaiah is doing, and I feel like typically everyone wants me to just say he’s fine. Or maybe I just feel like I *should* say he’s fine, because he generally seems, well, fine. He looks fine!

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The truth is, though, that we don’t actually know how completely fine he is, and we won’t for a long time. Fourteen weeks early is a lot of weeks early to be born. And our experience with Ava means that sometimes we worry about this in excess. To be clear, Isaiah does NOT have Angelman Syndrome or anything like it. But raising Ava is exposing us to a wide world of possible things that can go wrong with children, and this makes it a bit harder to just say, “He’s fine.”

To be specific, right now I am sort of DYING over the fact that Isaiah can’t handle textured food. And by can’t handle it, I mean he gags and throws it up. Even itty bitty little amounts of texture. After all Ava’s trouble keeping food down over the past year, this is reeeeaalllly hard for me to swallow.

Yes, I know I just made a terrible pun.

Since he’s not “outgrown” this oral aversion after 6+ weeks, and I’m familiar with oral aversions thanks to my Facebook feeding tube support groups, I finally took to the internet: first to a preemie parent group on Facebook and from there to Google and…yep, it turns out this is a preemie thing. Very early preemies apparently often have a strong gag reflex and/or oral aversions. It seems this is at least in part because they have tubes in the mouth/nose for so long in the NICU. I think it’s funny that 8 months after leaving the hospital this can still be an issue…but apparently it’s a thing. A fairly common thing for a 26 weeker like Isaiah.

Most likely this won’t turn into anything you’ll think is a big deal. In the grand scheme of things, Isaiah will probably be FINE.

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But…what “fine” looks like for me right now, though, is a bunch of work. More calls to insurance, therapists, and early intervention. More frustration, because I don’t think insurance will cover this and early intervention is slow to kick in. More homework from therapists. More tedious food preparation and feeding. More delay in reaching my dream of my three children—or even TWO of them—eating the SAME THING at mealtime instead of having to prep & serve three totally different kinds of food every time they eat.

Of course, we’re incredibly grateful for the ways in which Isaiah does seem fine. He’s adorable and amazing, and has the best laugh. But feel free to pray for my sanity till he can keep his food down. 🙂

A year later

A year ago, Ava got her feeding tube. As crazy as things are right now, I’ve thought so many times lately how great it just to not be THERE.

I haven’t posted for a while because things have been just that crazy around here. Of course things are always crazy here, but on our own Slezak family relative scale of crazy, it’s pretty high.

Also, I’ve been working on migrating the blog to a much better home on wordpress, but haven’t been able to fully finish and it’s kept me from posting new things. I’m henceforth declaring this under-construction-site active. Pardon our dust, as they say. 🙂

A year ago today (or yesterday? It’s a blur) Ava got her feeding tube. We spent nearly half of last November at the hospital. So as crazy as things are right now, I’ve thought so many times lately how great it just to not be THERE.

And the feeding tube has been a bumpy road for sure, but we know it was a good decision. Ava is healthy and growing, and over the past few weeks she’s been keeping her food down. She’s also starting to show more interest again in eating and drinking by mouth…something she lost when the tube went in. So we’re hopeful.

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Ava enjoying the bubbles at the Early Steps Fall Festival

As the holidays approach, too, I’m remembering how little of the holidays we really got to engage with last year…and the year before. I’m not sure how much more we will be out celebrating this year, because it’s still pretty hard for us to get out of the house. If nothing else, we’ll play a lot of Christmas music while washing plastic parts and feeding little people. But at least we aren’t looking to be spending the season at the hospital. After the year we’ve had, that’s something we’re very thankful for.

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Little guy is growing, happy and makes us all smile.

Anyway, this is just a post to check-in after a long silence. For those of you who book mark, we’ve moved to teamslezak.com. I made a misstep in transferring our domain name, and, well, as I said, pardon our dust and click here instead. The old site’s still up for now but I won’t be updating it.

Happy Thanksgiving.

 

 

Blended diet, week one.

So how is Ava’s new blended diet going so far?
Well, this happened:
Yes, that’s our ceiling, courtesy of Melissa Burton an incredibly kind friend who’s been helping with Ava’s new feeds.

You could say it’s been a smashing success:

Yes, that’s Gerber chicken and gravy, 2.5 ounce jar.
This one was my fault courtesy of someone besides Melissa.

Although I didn’t smash the baby food chicken jar on purpose, I’m still eager to get on with making our own blended food…once we get this new feeding routine down. We are still adjusting, and it made for a fairly laborous Labor Day weekend.

But more importantly, Ava has been a happy girl with her new diet. So far, she’s keep ALL of her food and water down since we started on Saturday, and her system seems to be taking it very well. She’s been sleeping better, too.

Here’s to less puree around the house tomorrow…

Baby steps with baby food

Sure, Ava has Angelman Syndrome and hearing loss, but our biggest challenge overall has been helping her to eat.

We’re almost a year into her feeding tube, and it’s been a good step forward. But after 4 months of reflux and trouble keeping her formula down, it’s time to step out behind the ease of canned Pediasure into the wide world of blended food.

I’m actually super excited and hopeful about this, because I’ve been less than thrilled with her 100% formula diet. I can’t wait to see how putting REAL food back in her system will help her health overall.

So, when I got the initial recipe we’re to try from her dietician today, I was disappointed. It’s all packaged baby food (even the meat) and other items that are less than the ideal menu of healthy fats, brain food and organic veggies I was dreaming of (and have been reading about). The recipe is designed to be easy to make, and I can appreciate that. But I’m willing to do the work of making my own food, so it’s not what I really want.

I feel like I have to stick with the recipe at first because I’m worried that if I go off on my own right away, the texture won’t be smooth and runny enough to get through her tube. And we see the value of working under our dietician’s supervision, too, especially while we transition her and learn.

So off I went to Publix. For the first time as a parent, I even bought this:

 

I felt like I was judging MYSELF while I put 6 jars of meat on the checkout conveyor belt. (If you’ve bought this for your children, I apologize for being judgy about canned baby meat. Apparently I ate it as a baby, and totally survived. It’s just not my thing now.)

Anyway, this recipe is not what I want, but alas, it’s the baby step I’m taking tonight. We’ll adjust the ingredients as soon as I figure out what I’m doing and we invest in a Vitamix to really blend it down right.

I thought it would be good to blog this so I can track her progress from this initial recipe toward healthy, homemade food and ultimately, I hope, to a ketogenic or low-glycemic index diet to help with her seizures and brain health.

And before you begin hating on our dietician: she told me she’s totally on board with us adjusting the ingredients over time. There are complex factors that play into the recipe for Ava and I agree with her that we can’t make all the changes we want at once. For now, here’s to a good start, and less upset tummy for our sweet girl.