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.

Our Hurricane Irma Experience, in pictures

Most everyone in Florida has stories from this week. Here’s a little bit of ours.

A beautiful Sunday morning. The quiet before the storm…

I took some “before” shots all around the house. I’m so glad I did.

Ava’s room was staged as our safe room. Elijah loved all the mattresses.

Since it was Sunday morning, we decided to participate in Northland Church’s worship service (recorded a week prior). The kids participated with percussion instruments…

(Thank you, Northland Church in Longwood, FL!)

I even got some cuddle-time with my favorite princess before the storm hit. 

By mid-afternoon our first piece of glass shattered: a tea press that I don’t use too often, thanks to hurricane Isaiah. Thankfully, no one got hurt (and we still had power/lights to vacuum up the mess).

Around 5PM we had our first tornado warning. Time to “hunker down” (with our technology, of course).

Watching the PBS documentary “Walt Disney” and checking the hurricane updates that evening after the kids went to bed. 

I had to “get my steps in” in order to reach my daily goal (or was I running for shelter??).

We lost power around 12:15AM Monday morning. The wind sounded like ocean waves crashing on the shore. “Thumps”, “thuds” and “bangs” were heard on our roof for hours.

The next morning, peeking out the back to assess the damage…

And the front. Tree limbs everywhere!

The side yard. There were some really large limbs that fell!

Minimal damage to our roof. It could have been so much worse.

And then we found baby squirrels whose nest fell from the tree, and found someone to rescue them:

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And finally… The clean-up.

Special thanks to my neighbors for lending a hand, a rake, and a leaf blower!

Total labor hours on Monday: (approximately) 6 hours

It was amazing to see so many neighbors helping each other out.

Our power was out for 4 days (which is less than some!). By day 2, Ava and Isaiah ran temperatures of 101.8° and 99° so we headed to Disney for 3 nights, staying at their value resort until our power was restored. 

We are grateful for the minimal damage to the house; for the texts, emails, phone calls, prayers and stop-by’s from friends and family; for the freezer storage that salvaged all of Ava’s blended diet and freezer meals that Laura worked so hard on.

God continues to show His love, His kindness, and His provision through so many of you! Thank you!

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.

Craig’s Top 10 Highlights of 2016

Things/events/times, from one of the hardest years of my life, for which I am most thankful for.

These are things/events/times, from one of the hardest years of my life, for which I am most thankful for.

10. The Braves’ final game at Turner Field.

The gift of time to be able to go to Atlanta and see the final game at the TED with my brother Troy and buddy Tim was an experience I’ll never forget. Thank you, Troy and Lori for the MANY ways you’ve blessed me and my family this year!

9. My family, and their gift of a moving company to help us move while Isaiah was in the NICU.

Need I say anything else about that? That blessing from my parents, brothers and sisters-in-law was HUGE!

8. My church family at Neighborhood Alliance Church.

I don’t know how our family would have gotten through without these amazing people. They have been some of the best representatives of Jesus Christ that I know. I am constantly thanking God for them.

7. The selling of our old house and buying our new house 6 houses away.

This all happened while Isaiah was in the NICU, and couldn’t have been more seamless, thanks to Anne-Marie Wurzel, our realtor.

6. Ashley and Melissa Burton.

I wanted to single out these two, as they have spent hours at our house, allowing us to work, go out on date nights, and just get some respite. I am deeply indebted to you both!

5. The Soul Care conference in August.

This was life-changing! If you are not aware of Soul Care and the benefits you can experience from these 7 transformational principles, it’s so worth checking out.

4. Jeanette Wampach (Laura’s mom).

There is no other person who can come to our house and know exactly what to do as she can. Between her grandmother’s heart and special bond to our kids (especially Ava), her nursing background, and her being retired being able to spend nearly half the year with us… She deserves high praise!

3. Elijah and Ava.

These two mean the world to me! Elijah is the best big brother anyone can ask for. He’s extremely smart and funny and incredibly loving. Whenever he’s away at Papa and Gigi’s house, his presence is missed; he is a force of nature! Ava is the absolute joy of my heart! Her smile and laugh and cuddles brighten everyone’s day. I thank God for these two!

2. Laura.

She is the glue that holds our household together. She has become such a great advocate for Ava, doing tasks that go way beyond her comfort zone, yet she does so with great care. I don’t know how I could do this without her. She is my best friend and my greatest supporter.

And finally…

1. Isaiah.

A true miracle from God! Born 13 weeks early at 2 pounds 3 ounces. He now weighs 15 pounds and is doing quite well. He has been a surprise in so many ways and I thank God for this little life.

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Honorable Mentions

(ONLY because I limited my list to top 10. These (mostly people) have made all the difference in the world and I am so thankful for each)

  • The rest of our incredible families
  • Emily and Ryan Dailey
  • Shelby Griffis
  • Mary Cornelius
  • Ava’s therapists: Liani (OT), Amy (PT), Ana (Oral/Speech), Jen (Deaf teaching), Ruthie (Oral/Speech), Ally (PTA), Victor (PTA)
  • Celebrating 10 years working with some of the most amazing people at Monsters Laugh Floor
  • The World Champion Chicago Cubs (Craig asked his wife to edit this before posting, so I took the opportunity to add this to the list.)

There you have it. Thanks for taking time to read my list. Here’s to a new year and all the God has in store!

 

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.

 

 

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.