Reading.

So I don’t read to Ava very often. 
I feel like people could easily judge me for this. I mean, we know reading is one of the most important things you can do with your little one, right? And a nonverbal, hearing-impaired child who has years of speech therapy in front of her surely needs plenty of story time to help her along. She probably needs about 4 times as many books read to her as Elijah does. 
Even if you weren’t judging me for not reading to her, be assured that I feel bad about it anyway. Often. I mean, how long does it take to just read a book to your daughter, right? And what’s worse, Elijah & I read at least 3 books together every night. It’s totally unfair. 
Well, I actually read a book to Ava today – a fun pop-up book called Glitter Critters. I began my endeavor at 4pm. Here are the steps that ensued.
  1. Inside my head: Hey, I could read Ava a book right now! 
  2. Go find Ava’s Big Mac Button. Since our house is for sale, I can’t keep it in a convenient location; must remember where I put it.
  3. Record a new message on found button: “Turn the page” now plays back whenever she smacks it.
  4. Find the book icon the speech therapist gave me to put on the button so she associates it with reading.
  5. Sit down on the floor with Ava, the book and the button. 
  6. Realize she can’t reach the button well while floor-sitting; need to use the high chair.
  7. Realize she has a poopy diaper.
  8. While changing diaper, observe child #1 having a (rare) accident on the carpet. Did I mention our house is on the market? 
  9. Help Craig clean up accident. Not because he isn’t capable, but because teamwork is just kinder when it comes to accidents.
  10. Rearrange dining room chair/high chair setup.
  11. Situate Ava in her high chair with book and button on the tray.
  12. Remember she only has one hearing aid, as the other is still out for repair: feel bad for a moment; move on because nothing can be done about the fact that she may not hear half of what we read.
  13. Start reading, giving her time to remember she’s supposed to hit the button to tell me to turn the page. 
  14. We read the book, and she gets into a button-smacking groove about halfway through! Does she get what she’s doing? Who knows! It’s a start.
  15. Hey, we did it! Let’s try it one more time!
  16. But first, why not take a picture of her with her fun book and the button? 
  17. (Series of blurry/head-turned-away iPhone pictures ensues.)
  18. Fine, let’s quit trying to show off and just read the book again.
  19. Elijah runs up, begins excitedly hitting the button for Ava.
  20. Explain we have to be patient and wait for Ava to do it; he can have a turn after.
  21. Start reading again, with Elijah banished to a buttonless book on the couch…but now Ava is rubbing her eyes: her way of telling me she is DONE reading and probably also tired.
  22. Rubbing and yawning persists; it’s over.
  23. Go to the couch and read with Elijah while he promptly smacks the button for each page turn.
  24. Meanwhile glance guiltily at Ava, still sitting in her high chair, rubbing her eyes, bored.
  25. Leave Elijah to play with the button while I get Ava’s bath ready; it’s 4:30, Craig’s leaving for work and I have to get started on, yes, nighttime routine things, or the kids will get to bed later than I’d like. Book time is over. 
So, when I feel guilty about the things I’m not doing for Ava…or when a therapist asks me if we’ve done the exercises/assignments she’s given us and I say no (which happens multiple times a week lately) I try to remember lists like this. Because while the details vary, so many tasks that seem simple when they ask if I’ve done them…just aren’t. Reading is one of a long list of things we are told to do with Ava each day, and often they end up being as complicated as this book-reading venture. 
Lately I am trying to live by the motto “A low bar is better than no bar.” We can’t give up; but high standards right now are oppressive. So, hopefully I’ll get to read to Ava again next week. We’ll see.
  

Button

Little girl is getting her feeding tube switched to a skin-level Mic-Key button today! They have to put her under, but it should be a short procedure and a big step closer to getting her back in the bathtub and able to get back to full therapies & time on her stomach. 
Now she’s asleep on the pre-op bed and they haven’t even sedated her yet. So far, it’s looking to be a much smoother event than when we came to get the initial tube put in back in November.

So many things

The Children’s Miracle Network Christmas drive is back on the radio and I’m thinking of how far our family has journeyed in a year. Last year this week, we rushed to make it to Elijah’s Christmas program after Ava’s MRI. I’ve not let myself dwell a lot on last December, because it was a brutal time. These are better days.
Starting to feel a backlog of things I need to post because we’ve had a lot going on in our family lately, but, WELL, we’ve had a lot going on in our family lately. I’ll give it my best effort.
First, Ava did in fact get her feeding tube just before Thanksgiving. She’s doing really well with it. Her weight had plateaued for several months, and since switching her formula and then starting the tube, she’s already gained 2 pounds.

Her tube has also been a huge relief for us. It literally has given us several hours back every day. We get to play with both kids more. It’s easier to cook dinner. I don’t HAVE to do laundry every single night. And Ava is sleeping better  — part of her waking up may have been hunger.
A feeding tube is still a lot of work, but compared to what we did for her first 19 months of life, it feels like a vacation.
So, then there is this thing that sort of just snuck its way onto Facebook about a baby… if you missed it, click here to watch the announcement video.
If this all seemed out of nowhere, well, it kind of was. We found out our “bonus child” was on the way in the middle of a busy fall. Almost overnight, I was stricken with morning sickness that lasted all day and night, topping both of my previous pregnancies. Good times. (Nothing like getting sick in your daughter’s hospital room…)
We opted this time to do fairly new blood test that looks at the baby’s chromosomes and can pick up trisomies (disorders caused by the presence of a third chromosome) as well as microdeletions (Ava’s disorder is caused by one of these) and other genetic abnormalities. I’ll be blogging about the test another time, but for now, suffice to say we got a call at 12 weeks telling us the test came back free of any concerns…and the chromosomes are X and Y. It was a little wild to get that over the phone, but we are grateful for the reassurance that the little guy’s chromosomes look like they are in good order.

So, with that, we are getting ready for Christmas like everyone else, and instead of New Year’s resolutions, will start working our way through the projects & adjustments we need to make before the little guy joins us in June.

…and I just caught Ava chewing on her feeding tube, so that’s my cue to sign off!

Feeding Tube Update

It’s Friday and Ava is still resting at Arnold Palmer Hospital, recovering from the cold virus. She was scheduled to get her feeding tube (through her stomach) this past Tuesday, but the anesthesiologist would not proceed out of caution because of the cold. Since Ava has always had difficulty getting enough fluids in her (thus the purpose of the feeding tube), we have kept her here at APH to allow her the rest and fluids she needs to fully recover.

It’s looking like today, the GI doc will be placing an NG Tube (a feeding tube through Ava’s nose) as a temporary solution so that we can continue to get fluids and nutrition into her…at home. The goal is for Ava to be completely free from this cold virus, and then do the operation for the actual feeding tube next Friday…on Laura’s birthday.
Lastly, we HOPE to be released from the hospital today (it’s 3p at this writing), but we haven’t seen the GI doctor yet. Fingers crossed.
Thank you for the texts and messages checking in on us. We have been so encouraged by the outpouring of love you all have displayed! 
Laura has said that staying at the hospital has been a bit of a vacation in that she doesn’t have to do any laundry or dishes. Now THAT’S looking at the positive side of things.

Delay.

The doctor and anesthesia team pronounced Ava too sick with her head cold to go ahead with the feeding tube this morning. She’s pretty miserable, although it’s just your run-of-the-mill cold.
She’s been admitted with IV fluids to help her get better and if she’s well enough, to do the procedure in a couple days. She’s not sick enough to be in the hospital…except that it’s nearly impossible for us to keep her hydrated at home while she’s under the weather. This is one of the reasons we’re getting the tube in the first place.
So, it looks like we’re camping out at Arnold Palmer for an undetermined length of time. 
If you are someone who prays, please pray Ava will get well quickly enough to proceed. I am dreading the idea of going home and returning to our brutal feeding regimen til after Thanksgiving. And, for Ava’s sake it would be great for her just to feel better. She and her brother are both down today. 😦

Feeding

Feeding Ava has for sure been one of our biggest challenges since she was born, and it’s still the most time-consuming piece of her care. Those of you who have been in-person with us over the last 18 months probably have a little idea of what we mean.

We’ve come to the decision that we need to get Ava a feeding tube, and it’s finally scheduled for next week. So many professionals have praised us for our good job of feeding her and have said how great it is that she doesn’t need a feeding tube. Thus far we haven’t had to do anything medically invasive with Ava and everyone said that was really great. (It was.) But finally this fall some of our specialists really heard us when we said it takes 4-5 hours to feed her daily, with no relief in sight…and even then, she wasn’t getting enough fluids, and by now was no longer gaining weight, either.

When they really heard us, they stopped congratulating us and suggested a feeding tube. I’m not sure I’ve ever been so relieved to have someone stop telling me I was doing a good job. There was a time when I might have considered the tube a result of our failed effort, but it feels nothing like that really. My goodness, we have nearly been brought to the end of ourselves trying to feed this child. It is not worth the sacrifice to our family life anymore.

It’s best for Ava’s health that she gets the tube, and we are at peace with the decision.

The tube means she’ll be able to get nutrients, fluid and her seizure medication directly to her stomach when she needs it. We won’t have to be at home to give her fluids – something that has controlled our schedule for a long time.

The tube does NOT mean is that we’ll quit giving Ava food or give up on her eating and drinking as she grows. She loves her purees and we will still let her enjoy meals. Now we’ll also have time to work on her oral therapy again, with a goal of her eventually eating and drinking independently.

The tube will be on her abdomen, not down her nose. At first it’ll be a longer Foley tube, and after her body adjust it’ll be changed out for a small Mic-key button.

Ava’s feeding tube endoscopy will be this coming Tuesday, Nov. 10th. The procedure should be short and simple, but we have to stay at the hospital for a couple of nights while they help her body adjust and show us how to use her new equipment.

I’ll try to update as to how she’s doing. This is not a high-risk procedure and we don’t anticipate problems…just might make for a long week for us all. 🙂

Happy dance

We are now a about a year into our relationship with early intervention, therapists, insurance authorizations, tests and specialists. Much of our experience has been frustrating. We’ve gotten long waits, a lot of no’s, a lot of run-arounds, a lot of “Well, if you had medicaid…” and the most-hated line: “She’s just a baby – there’s no rush.”

But THIS WEEK we are doing the happy dance. We got insurance to approve Ava’s new, uber-expensive formula – something even our doctor’s office said might not be possible. One of our therapists got a hold of a brand new $150 therapy tool to loan us while we wait for insurance to approve ours. And the biggest of all, early intervention significantly upped our services today after a year of run-arounds and no’s.

Even though I intended to ASK for more services today – and did – I didn’t expect a yes and was shocked when we got it without a fight. In fact, I think she had decided to give it to us even before I asked. Sometimes I fight hard for things and do lots of research and advocate and make phone calls. That probably helped a lot getting the formula to our front door in a week. But sometimes I don’t feel like advocating. If I think it’s going to be a waste of time, it’s hard to feel motivated to push for services. That’s how I felt going into the early intervention meeting today.

In moments like this I see God just take care of things for us when I don’t have the fight in me. I would love to be able to tell you we were praying really hard for the outcome of the meeting and that God answered our prayer and it was this awesome super-spiritual thing. Or even that it was my great research, clever presentation and convincing proof that changed our case worker’s heart today. The truth is, I didn’t pray very hard about it and I didn’t put much prep into this meeting. It just didn’t happen.

I do believe God answers prayer, but I also believe that he’s strong when we are weak and often he just chooses to be kind to us no matter what we do to try to control the outcomes.

The special needs life is a roller coaster for sure, and we have other immanent battles to face. But today, we are thankful for a few victories, and we will do the happy dance.

I’m not sure yet where we’re going to stockpile our monthly supply of formula, but we’re pretty happy to have it.

Ava, Lucie, and the "Light" of Gungor


I remember the day last year when our student intern, Carlos, came into my office at church and told me about a blog he read from Michael and Lisa Gungor – members of a band that he and I both love – who just had their baby, Lucie. Lucie was born with Down Syndrome. Carlos sent me the link to their blog, and I read it…and I cried. Michael and Lisa had no idea until Lucie was born that anything was unusual. As you can imagine, when the doctors told the Gungors the diagnosis, their lives were flipped upside down. 

At this point, Ava was just a month or two old. Not diagnosed with Angelman Syndrome. Not even diagnosed with hearing loss. We were struggling with feeding issues and hypotonia, but that was about it.

To be honest, I think some of the tears I cried for the Gungor family were out of my own fears that one of my children would be born with special needs. Having a child with a diagnosis like Down Syndrome or autism, or any other syndrome/disorder was something I feared most…To the point that, when Laura was pregnant with Elijah, I became the caffeine-nazi for fear of Elijah developing ADHD. 
(Oh, the ignorance of it all!)

I also cried for them because I knew how hard parenting a typical child was, especially when your family is really busy (and whose family is not busy these days?). I never thought I could handle life with a child with special needs, and my heart went out to their family and other families with special needs kids.  

When I would see a family with a special needs child in the show where I perform at Disney’s Magic Kingdom, I would often find myself praying for the parents, asking God to give them strength and joy in their journey. I would pray that those families could catch glimpses of the Divine within their circumstances.

Now I find my family on the receiving end of those prayers. And I have found strength…and joy in this journey. I have also caught glimpses of His divine image on the face of our beautiful Ava, in the faces of other kids with Angelman Syndrome, and in the hardships we all face in this life. 

I, we, are not alone left to wander. He is Emmanuel: God with us.

Last week I discovered that Gungor put out a new album called “One Wild Life: Soul.” The album is pretty amazing! One song, called “Light,” was written for and about their daughter Lucie, who’s name means “light.” (Ava’s middle name – Laine – means “bright shining.”) Yesterday, I stumbled upon a video they made for this song using home videos from Lucie’s birth and first year…and I teared up again. This time the tears came from someone who can better identify with what the Gungor family is going through. The tears also came from someone who can appreciate the joy that their special needs child has brought to them.

Please check out Gungor’s video for “Light” here: 

Toddler

In my heart, I consider Ava to be very much a toddler right now, not a baby. She’s 16 months old. She’s in the “baby” category in terms of milestones (we don’t really have any new ones, in case you were wondering), but I feel like it’s not true to her to keep calling her a baby. Sometimes I think of the fact that the term “toddler” certainly implies toddling around…something we are still far from…but etymology aside, Ava is almost one-and-a-half years old.

She doesn’t look like a little baby anymore, but is behind in many ways. I see pictures or video of Elijah at her current age and it’s so different. He was talking (a lot, actually). He already liked trains, ate chicken vegetable soup with a spoon and had friends. He was already starting to send Happy Birthday videos. 

Ava seems to be in a category that’s all her own.

This is all the beginning of people noticing that things with Ava aren’t quite as they should be. We flew a few times this summer, and twice I was asked by TSA if Ava could walk “even a little” through the metal detector. The first time a flat “no” was enough. The second time they pressed, and I had to explain she has special needs and really can’t toddle through at all. They are just doing their job, and she clearly looks old enough to toddle, but it’s not fun having to say no.

Sometimes other kids are starting to notice. Mostly when she unknowingly whacks them in the face with her flapping arms. They don’t appreciate it. Or when she hollers really loudly (I think that’s more a consequence of the hearing loss). But even though I know it’s Ava’s disabilities that cause her to do these things. I remember when Elijah was one, I was often having to explain to two and three-year olds-that he didn’t understand yet what they expected of him. Most 16-month-olds are equally frustrating to older kids. Toddlers don’t know the rules of play yet and don’t usually speak well. Sometimes they hit, too – with a lot more purpose than when Ava does it. So we would be dealing with that sort of toddler-to-big-kid-intervention right no matter what. 

When Ava’s in her stroller or the carrier, most people still don’t know anything is off and swoon over her. She’s beautiful – truly – and usually happy. I soak in these times when people can’t get enough of her because I know as she gets older, fewer people will probably see her this way. They’ll be distracted by other Ava-isms they don’t understand. I like that right now, I don’t usually HAVE to explain Ava to the rest of the world – unless you work for TSA, apparently. 🙂

I try not to worry about how this will be when she is five and I have to explain why she is acting like a one-year-old. Or ten, or fifteen. At least right now she IS one. It helps. And I will enjoy this part of the moment.
I think this will be the year Elijah starts to understand Ava better, too, because so far he attributes everything to her being a baby. He says that’s why she can’t walk or talk. But toddlers do those things. And as he sees younger babies this year start to pass her up, I think he’ll start figuring that out. That’s fine with me. I want him to understand his sister. 

For now I just follow his lead. If he says something that lends toward me teaching him more about Ava, I take the opportunity. Once he said “When I was a baby, I wore hearing aids!” So…I explain. Other times he complains that she’s loud, and well, that seems like more of a pot-and-kettle situation to me, even though it’s true that her loud noises don’t form words like his do.

Truth is, I think Elijah will see Ava in a different way than even Craig and I do. He will love her as his sister and whoever she is will be his “normal.” So even as I teach him, I want to learn how Ava look through his eyes.


Feeling a little blue.

From Craig: 

Ava is 14 months old (6-24-15), and for the past few days, I have been feeling blue. I’ve been doing pretty well lately. I just think that my grieving has moved from grieving over the changes in my life to grieving over all the challenges my daughter faces. 

I think initially the grief I felt was for “my side” of this diagnosis: How is this going to affect and change my life individually, and our lives as a family? 

These days I look at my beautiful 14 month old (who absolutely has my heart wrapped around her finger) and I grieve that she cannot communicate verbally to me by saying simple words like, “dada” or “mama.” I grieve that she is not able to roll over from her back to her stomach or sit up without tipping over. I grieve that she is not yet able to walk or crawl. I grieve that she has trouble putting food into her mouth by herself. I don’t compare Ava to any other child her age. I can’t do that. My grief is not about that. I want these things for her. Absolutely for her! And my heart is heavy. 

Ava’s therapy is ongoing. The process is slow. And I know that one day she will sit up on her own. One day she will crawl and walk. One One day she will feed herself (and it won’t have to be purees!). And one day, Lord willing, she will utter the words “dada” and “mama.” These will be milestones that we will celebrate. Heck, I will shout it from the rooftops: “SHE DID IT!” 

But for now, I stick to the day-to-day chores. I engage my little sweetheart as best as I can. She knows she is loved! I do know that!

And I pray. I ask God to soften my heart; to make me a better man; to help me be the husband and father my wife and family need. 

And I allow myself to grieve.