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. 🙂

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.

The day has come

Delivery date: March 7, 2016
Today’s date: June 6, 2016

13 weeks

91 days
2184 hours
Over 4.5 ponds gained
Oxygen, caffeine, tests, vaccines
Countless trips back and forth to Winnie Palmer for mommy and daddy…
And finally…
ISAIAH IS COMING HOME!!!
Thank you all so much for your prayers, words of encouragement, meals, help with the other kids, help around our house, help with our move, reading our posts,and overall, just loving on us! We thank God for all of you!