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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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.

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.

August in our world

It’s so hot here. This afternoon I was wrestling with a car seat in an unshaded therapy office parking lot at 4pm…no rain today…and I felt like I was going to melt right onto the pavement.
I don’t know what that has to do with anything, but sometimes it’s just the first thing you think of when you live in Florida in August.
My recent lack of posts comes from my lack of free hands, free brain space, free time. I’ve been sharing a bit over at the Orlando City Moms Blog, but otherwise I’m usually holding Isaiah, waiting on hold with a therapy/medical/insurance person re: Ava, or being held captive by the endless wellspring of “why” questions from my inquisitive Elijah.
So…what to tell you? We are grateful to be all together as a family. Our home is full of life, full of noise. We do a LOT of dishes. A LOT of laundry. We are tired.

Isaiah is, overall, doing great. He’s growing. A little slowly, but he’s growing. I’ve had to set aside my more selfish wish to breastfeed him to do what he needs most. Drinking is a lot of work for his lungs and he still gets winded often when he eats. He burns fewer calories drinking bottles, and we’re able to boost it with a little Neosure and his daily multivitamin, too. So, I pump milk for him almost exclusively. It’s a lot of work, but it’s helping him grow right now and that’s more important than what I want.

Ava is growing like crazy. She’s learning some communication skills, standing with help, and overall making a lot of progress in therapy. She’s also been having issues with reflux and vomiting since May. That’s right, May. Three months. Poor girl. I hesitate to share this in the wide world of interwebs, but if you want to know how we’re doing right now, this is how we’re doing. We’re cleaning up a lot of Pediasure Peptide. Troubleshooting this has been slow, tedious and so far unsuccessful.

These may seem like weird things to tell you in an update, maybe TMI. But if you actually want to know how we’re doing right now (and if you’re still reading, I guess you do!), then this is how we’re doing. A lot of pumped milk and Pediasure Peptide, and a lot of related plastic parts that need cleaning and sanitizing on a very regular basis.
No, wait.
That’s not how we’re doing. That’s WHAT we’re doing.
Not the same.
HOW we are doing is something else. I’m not quite sure how I am, except to say I know God is here with us and all of the milk and Pediasure and plastic. He’s here and he cares about us. I don’t believe God’s job is to fix all my present problems or make my life easy. But he is with us. And sometimes now when I am cleaning up another stinky mess I am asking God to fill me up with more of himself. More, God. I need more of you right now because I don’t feel like I can do this one more time.
Answers do not abound in our life, but we are asking God for more of himself.

Thankfulness, progress…and more tests

In the belated spirit of Thanksgiving, YES, we were really thankful to have Ava’s hearing aids on in time for the holiday
Everyone is, of course, asking how Ava’s responding now that she has her aids. The first week she was pretty quiet, even a little less responsive that she’d been, but I think she was just taking everything in. The past few days we’ve started to see her laughing and interacting more again, and even starting to make slightly different sounds than the “aaaahhhh” noises she’s stuck with up till now. That’s a good sign that she’s absorbing some of what she hears.
She started occupational therapy 2 weeks ago. We’ve been exercising her every chance we get and are seeing progress. Unfortunately, Ava is at her best around 11pm. As tiring as it is, sometimes I just go with it and exercise her then because she gets so much more out of the time when she’s alert and animated.
As for the ongoing parade of specialist visits…today we saw the neurologist again. Three sets of lab work are back and everything is normal. (I kind of understand what they were testing, but not well enough to really explain it, so don’t ask). It sounds great that everything was normal, and it is, kind of. Ava still has global developmental delay and the gap is widening as she gets older. These tests simply ruled out some possible causes and move us on to another round of investigating.
We left the neurologist with a dizzying pile of appointments and tests to take on next. It’s a little overwhelming. Tomorrow we see the ophthalmologist and next week we have an EEG scheduled. Once I get callbacks from the other offices we’ll be getting an MRI, swallow test, a helmet for her flat head (caused by her not being strong enough to hold her head up in her first few months), and adding speech & physical therapy to her regimen.
So that’s where we’re at. One of these days I’ll write more again about how we’re processing all this, but there isn’t quite time for that right now. I think I am getting more used to living in the uncertainty and becoming more patient as I realize there is no clear guarantee of answers, or if answers will even make a different for Ava’s outcome or not. One day at a time.