Four Months Old!

Just over a week after getting his hearing aids O turned four months old. 

Leading up to getting the hearing aids we had run through a list of developmental milestones with our APSEA rep. The two categories we focused on were 0-3 months and 3-6 months. 

In the first he was hitting every single milestone - except those that related to language development.

In the second he was hitting many as well - except again any that related to or rely on language development.  

In the nine days since getting the hearing aids O has been developing by leaps and bounds. 

We're hearing coo's & babbles we never heard before. He's experimenting with different sounds, volume, and random little noises. He's more engaged with certain toys that held no appeal in the past. He will look for noises. Startling to sounds that didn't startle him before. Beginning to take turns when "speaking" 

It's amazing what two little pieces of plastic & technology can do for such a tiny person. 

The First Week

During the lead up to hearing aids I kept reminding myself that it would be a completely new experience for O. He would be experiencing things that - to him - never existed before.

It was easy to accept that. But it wasn't easy to live that. 

The first week with his hearing aids was HARD. 

My sweet happy baby would have, what we call in our house, a nuclear meltdown two to three times each day. He would scream and cry and fuss in ways he never had before. I know that it was a result of the over-stimulation from a very new and unique experience, but it was so very challenging to watch and handle. 

By around 5pm every day we would have to take the hearing aids out. I know the goal is for him to wear them every waking hour, but sometimes it's just not feasible. So out they would come. And then he would cuddle for about 20 minutes, then nap, and once he woke up we could put them back in to finish the day. 

That face. Those tears. Heartbreaking.

Wash. Rinse. Repeat. 

Hearing Aids Are In!

His reaction was to suddenly calm completely, and stare wide-eyed at everyone talking. He's definitely got a lot of new experiences coming!

Making Hearing Aids Cool

Once the initial shell shock wore off, and we started to get all of the logistics under control, I thought I'd look online for things to spice up hearing aids for kids. So, off the Etsy I went - and I was not disappointed! Here are some of the awesome accessories for kids to keep things fun!

Pilot Caps

These are not only cool, but super useful for very young kids. Lightweight caps that cover the ears, and tie under the chin, to keep them from taking them out. Since O isn't even 4 months old yet, it's not really easy to explain why he needs to keep them in. I definitely think we'll need to get a couple of them!

Coloured Tubes

Replacement coloured tubes! These tubes connect the device to the ear mold (the foam bit that sits in the ear). Inexpensive ways to brighten up the hearing aids, and are easy to swap out!

Tube Twists

Colourful twists that wrap around the tube, and come in multi-colour, sparkly, and bright colours! Again, easy to swap out to keep things fun, and even available in seasonal colours like black/orange for Halloween, and green/red for Christmas!

Hearing Aid Clips

These clips have bands to wrap around the hearing aids, and fun clips to attach to the back of the shirt. This way, they won't get lost on the playground!

The internet is going to be a dangerously tempting place...

And then there was a new audiologist!

What a difference a day makes. Or in this case a week.

I called the Audiology Department head on a Thursday, explained my concerns, and was wholly validated. We discussed my concerns, and also the fact she was leaving town for a conference and I should expect to hear back by mid-week. The following Tuesday I heard back from her confirming we had a new audiologist and who it would be.

There is a downside to O's new audiologist, but it is relatively minor. She only ever works Thursdays & Fridays. I can handle that.

I decided that, since she was just taking on our case, I would wait and call Monday morning if I hadn't heard anything. I didn't have to wait. She called me before 10am on Thursday. One week after my initial conversation with the department head.

The conversation with O's audiologist was great. Amazing even.

She confirmed our hearing aid order & color, expressed disappointment over the fact she wouldn't be able to see us the next day and set an appointment for the following Thursday to get O's hearing aids in.

The delay was completely out of her hands - the ear molds hadn't been cured yet, and wouldn't be arriving until Monday. She had just called the company to confirm.

But wait, there's more!

She went over payment (because $$$$), reminded me to bring in certain paperwork, asked if she would be able to forward our information to an organization that routinely helps kids with hearing aids, and let me know what to expect.

She also told me that she wants us to have a 'team meeting' shortly after O gets fitted, if not that morning, with APSEA & our SLP as well. Amazing.

Needless to say I am so, so relieved.

And although the switch to her meant a delay of two days from the original hearing aid appointment, I couldn't be happier with the decision.

Enough is Enough

They say first impressions are everything. I should have went with my gut.

Well, what comes before that? I mean really, because before I had ever even met O's audiologist I didn't really care for them. 

Now, that may be a little harsh to say, but it's true. You see, they called me on a particularly busy morning. Every morning is busy when you have a two month old, especially so when you're also working half days, but I digress..  

My phone rang with the audiologist I had never yet met calling to reschedule an appointment that had been cancelled on me at the last minute (and I do mean last minute when I had been up for hours sleep depriving a baby for said appointment..)

The audiologist was implying that my child was an inconvenience and made me feel bad that they would need to cancel other clients to "fit us in" when in reality it was their fault my previous appointment was cancelled. And also knowing full well that babies (and young children) receive priority as per the departments mandate. 

Let's be real honest here for a minute... you cancelled on me, and are now making me feel bad that it inconveniences you and possibly some old man, since I know other children can't and won't be bumped? I don't give a flying efffff.

How anyone can say that seeing this cute little guy is an inconvenience is beyond me.

It took three more appointments and two more phone calls where I was made to feel like an inconvenience before I finally got up the guts and courage to become annoying and call the department head to request a new audiologist.

It was a decision I didn't come to lightly. At first I wanted to wait until after we had the hearing aids, and were on to routine appointments, but then it became clear that regardless of any potential delay it had to be done.

On a Thursday I called and spoke with the department head. By the following Tuesday we had a new audiologist.

Scary Buying Decisions

Since O's diagnosis, we've had a lot of questions. What caused it? Could it get worse? Can it be fixed? What therapies will be needed? How can we best help? Fortunately, our rep from APSEA has been incredible in helping to answer a lot of these, and more, to help us feel like it's not completely overwhelming.

Once coming to terms with all of the basics, however, the biggest question is - what device will he need? The answer from APSEA was "your audiologist knows all about the current devices and will help you pick the one he'll need." So, we asked our audiologist.

"Well, there's option A at $550 per ear, or option B at $1,200 per ear. It has a few more features."

That's about it. So, I look up the devices on the manufacturer's website to compare the two. As far as I can tell, the features added in B wouldn't really apply, as they are controlled manually on the fly by the wearer to make things "a bit clearer" in very specific situations. Not really something an infant/toddler is going to do. So, we ask if we understand that correctly.

"You're right, he won't need those extras. Actually, he won't need the extras in option A either, we turn them off for children. Here's option C, it's $400 per ear, and will have everything you need. Except that A comes with a free gift if you want that."

Well, if they're functionally identical for children, of course we want option C. And no need to pay an extra $300 total for a free gift. So, we order, and let our APSEA rep know of our decision. And this is where it gets interesting.

She asks us if we feel confident in our decision. Having never bought hearing aids, and the amount of uncertainty we got from our audiologist, of course we answered that we weren't entirely confident. Thankfully, she offered to get us a second opinion from an audiologist she often works with.

The next morning we get the second opinion - option C is absolutely not acceptable for our little guy. While it would be functional, the extra features in option A are, in fact, heavily used in infants and toddlers. So, yes, they will cost $300 extra in total, but will also save us large amounts of frustration that could likely lead us to buying them anyway 6 or 12 months down the road.

At this point, we both feel completely let down by the audiologist we've worked with so far. While his testing and diagnosis has been extremely thorough, it has become clear that he has very little experience with children and parents. We are in a vulnerable position, and need guidance from the professionals.

All I have to say at this point is - I am incredibly grateful for our rep at APSEA for asking the simple questions like "do you feel confident in your decision", and for being willing to fight for us until we do.