Milk tattoo

Today’s doc visit was a relatively easy one: the allergist. Food allergies were one of Ava’s early issues. Before she was born I remember hoping she’d have fewer issues than Elijah, i.e. maybe no food allergies! Haha. Hahahaha….
Anyway, they did a scratch test (which involved sharpie-ing the letter M on her arm) & showed that she is still mildly allergic to milk. So no dairy for Ava till we test her again at 12 months, and we have to stick with the smelly hypoallergenic formula. Boo. 
But as far as we can tell, no other big allergies for now, and that’s really good news. Plus, we don’t have to see this doc again for almost 6 months, and with a lot of waiting for the next step, this is one thing we can “check off” for now as settled for the time being. 

A date for hearing aids

Ava’s hearing aids have finally arrived! And now, we wait for the first available appointment to get her fitted…a week from today.

I need so. much. patience.

But they are coming! She’ll get to start wearing them next Wednesday, Nov. 19th. Woohoo.

I’m guessing it’ll take a while to help her adjust to them (and to teach Elijah not to pull them off her head), but we are excited to see how sound brightens up her world.

Waiting

The past 6 months have felt like a lot of waiting to me. I did stop waiting for things to get easier, but my impatience quickly shifted to waiting for answers. How much difference will the hearing aids make? Will we find out if there’s a genetic syndrome with a name and some forecast of our future? etc. And as everything moves slowly, I find myself, again, waiting impatiently.

Last week when we first met with Early Steps about Ava’s entry to the program, we worked with the therapy team to set 6 month goals for her progress. I asked how us possibly getting a diagnosis between now and then might affect her goals…and they basically said that it won’t. Their philosophy is based on helping Ava make progress regardless of the cause for her delays. That a diagnosis may give us some explanation, but it won’t change how we help her.

That began a shift in my thinking about all this. I think I was viewing a pending diagnosis as some kind of looming pronouncement that will read us our future. I have felt both impatient for it and fearful of it at the same time.

But I don’t think focusing on medical explanations is really my best way to be right now. The goals we set with Early Steps made me feel much more encouraged. They are small goals…but the idea that we have a plan and will do therapy and help Ava achieve these things together is so much more uplifting to me than all the time spent testing and trying to figure out what’s wrong.

OF COURSE I’m not saying I don’t want to sort out what we can, or that I don’t want her to have all the medical care needed. But getting all the answers we are seeking won’t magically change everything either, so I think it’s better at least for me to not be so impatient for them.

I am really trying to live each day as its own gift from God. I’m not very good at staying in the present, but I think this is what God’s asking me to do right now.

15“In repentance and rest is your salvation, in quietness and trust is your strength, but you would have none of it.18Yet the Lord longs to be gracious to you; therefore he will rise up to show you compassion. For the Lord is a God of justice. Blessed are all who wait for him!” —Isaiah 30:15, 18

Craig on our journey with Ava

I remember when we found out we were having a girl. I cried. Overjoyed at how God answered the prayer of my heart. A little girl to take to Daddy-Daughter dances. A little girl to treat as my “princess.” A little girl to shower love an affection on, modeling for her the love our Daddy, God, has for us. 

Then came the birth. The moment I saw her arrive, I cried. Again.

She looked so healthy. She came full-term (at 38 weeks). She had the most beautiful full lips and complexion. My little girl had arrived! Ava Laine Slezak. A name meaning: “A life that shines brightly.” God is so good!

What I didn’t expect was the weeks, and now months of difficulty that has come with this precious gift. 

First was the issue of feeding. Ava had difficulty in “latching on” and would scream at Laura when she tried to feed her. It was so hard for Laura. Actually, it was a really trying time for us all. Ava lost around 10 ounces of weight, which doesn’t seem like much, but when you are only 6 pounds to begin with, 10 ounces becomes even more critical. We had to start bottle feeding her. This just made life even more difficult for Laura, who now had to find time to pump between feedings. Sleep was disrupted. We were overwhelmed.

(As a man, I can’t think of anything more paralyzing than to watch someone you love suffer so much stress and know there is nothing you can do to fix it.)

We sought some help from an oral specialist. One of the best around. She gave us some oral exercises to work with Ava on, in order to strengthen the muscles in her mouth. We seemed to get some results but nothing like what the specialist had suggested. 

I think back to the really long nights with Elijah, our firstborn. I remember that his fussiest hours were usually between 4-6am. I also remember that, at some point around week 6, I was ready to throw in the towel- not sure I could endure another night of sleep broken up by a fussy baby. That early morning when I went into Elijah’s room to console him, I was greeted with eye contact and a smile that seemed to say, “I know who you are!” My heart melted! It suddenly became worth all the nights of interrupted sleep. My son recognized his daddy.

(Okay, we can get through this. Just hold out until around week 6 when Ava will start recognizing me and smiling; that will make it worth it all. Just work towards that goal; it will all be okay.)


Week 6 came. Then week 7, and 8… No such familiar smile. 

I began to worry. I started having suspicions that Ava couldn’t hear, but who could I tell? Laura was at her wits-end with pumping, and feeding, and broken up sleep. We were already worried about her mouth and its lack of muscle strength- and what that would mean for her speech development. But something else was brewing. Slowly my worry and concern came to the surface and, one Wednesday morning while Laura and I were in the kitchen, I finally said:

“I don’t think Ava can hear us.”

“I don’t think so either,” Laura responded. 

She felt the same way. Both of us had the same concern: Ava was not responding to our voices, or any other loud noise; noise that used to startle Elijah when he was a baby.

Our 4 month check-up with the pediatrician was scheduled the following Monday and our pediatrician suggested that she take a look at Ava first, before sending us out to an Audiologist. Those 5 days seemed like an eternity, but they finally came, and as we suspected: something was wrong.

We were able to get to an audiologist later that afternoon and, through an otoacoustic emissions test (OAE), we found out that Ava can’t hear. A month later we were to go in for an auditory brainstem response (ABR) which would measure the frequencies that Ava can and cannot hear, as well as the decibel levels to which she an hear.

The results came back and Ava has moderate Sensorineural hearing loss.

Moderate. Praise God that it it is not severe or profound! This is treatable with hearing aids. She will be able to hear us tell her how much we love her. She will get to hear music; a gift that means so much to mommy and daddy. And, since we’ve caught this early enough, and with the help of early intervention, she should be able to catch up with language development. We don’t yet know the cause of her hearing loss, or if it could eventually get worse. We are just taking this one day at a time.

Now onto what we hope is the final obstacle: her strength. Ava is weak. What we thought was only an issue with her mouth, seems to be an issue with her whole body. The fact that she is small doesn’t necessarily mean anything. Laura was (and still is) small. But Ava cannot hold herself up on her own. We have been to a Neurologist (at 4 months) who didn’t seem to think anything out-of-the-ordinary was wrong with her (whew!). But we’ve also been to a Geneticist (last week – at 6 months) who has ordered a list of tests (blood work and urine samples) to see if there is any cause to the low tone. 

In December we will be going to an Ophthalmologist for Ava’s eyes (she has a stigmatism and trouble with her gaze), and we’ll take her back to the Geneticist and Neurologist for follow-ups on her tests. 

We appreciate your prayers during this season of life we are in. I thank you in advance If I (we) am (are) slow to respond to messages, texts, emails, calls… Life has gotten a bit more crazy as of late. Thanks for understanding!

On publishing this blog

I’ve always had this personal “rule” about journal-type writing that it not have an agenda or an audience, but just be writing for its own sake and for my enjoyment. This is the kind of writing that brings me the most happiness and, more importantly, helpfulness. I’m not aiming to get lots of followers, hits or work toward a book, nor am I hoping to keep pace with the number of posts bloggers say you have to do to keep an audience.

That said, we are not experiencing all this alone. We don’t feel like we are; you are all here too. We very much feel and know that’s true. And so the reason I’m publishing entries to share here (rather than keeping them hidden posts) is so those of you who care about us and our kids can stay connected to us through this new journey we are on as a family.

Right now this “journey” has been largely about Ava’s newly diagnosed hearing loss. But it was a journey before that came into play, and it is looking like there is probably more that will come along with it. So we’re inviting you to stop by here for closer looks into our current story. That’ll probably include some medical updates and some more personal things too. But being to orderly about it all does take the fun out of it for me…so we’ll just see where it goes.

What’s actually wrong with Ava’s ears

Ava has sensorineural hearing loss. This is a permanent hearing impairment in her inner ear (cochlea). It is not the result of an infection or allergy, or a damaged ear drum. This has been confirmed by several thorough tests done by several different specialists.

Thankfully, there is a lot that can be done to help Ava hear and develop speech & language skills in spite of the hearing loss, and that’s where we’ll be focusing her treatment. She is not getting cochlear implants at this point, because she actually doesn’t need them. If her hearing loss becomes more severe then it could be an option down the road, but it’s not necessary to do this kind of permanent procedure for now.