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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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. 🙂

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.