Patience is Not my strong point

Little Guy Just Turned 2

It's been 3 and a half weeks since little guy started wearing his hearing aids and he is really doing great. He is totally comfortable and doesn't make any fuss about them at all. The audiologist did change them with a slightly thicker one though that doesn't sit as comfortably on his ear and flips over more often. He's great about coming over though to get them put back behind his ear.

I do have to say that I expected to hear more speech much sooner. Being patient is so difficult for me. I spoke with the audiologist who did explain that his brain has to figure out how to process these new sounds before he's able to speak them. Makes sense doesn't it? I just had no idea though.

I definitely think he's becoming more responsive to speech. He also just really starting to respond to the signing that he's learning. I love seeing him sign and he's quite pleased with himself  as well - the big knowing smile that accompanies his signs is too cute for words.

I did express to our family case coordinator that I felt a little dismayed over the fact that the caring professionals working with little guy had very little experience with children who have hearing loss. I really want to be sure his specific needs (of which I am clueless of) are being met. Our coordinator has been great and hooked us up with a woman who teaches deaf and hard of hearing children. She will begin working with Ronan very soon. She will be teaching him how to listen. I am really excited about this and she's enthusiastic about taking on our little guy.

Now I just need someone to teach me how to be patient. Maybe that's little guy's job. I know he's got a lot to say to me and he has been patiently waiting for me to get the help he needs to do just that.

So ~ whenever you're ready little one, your mama is listening.

More Progress and questions

Despite what feels like some technical bumps the little guy continues to do remarkably well. On Monday we were scoping out toys for his birthday present in Target (more about that tomorrow) when I got a call about a cancellation at the audiologist. We could get in the next day to have his hearing aids adjusted upward.

Our appointment was a little unsettling for many reasons. It's one thing to sail uncharted medical territories but it's a bit unnerving when the professional that is supporting you leaves you with more questions than answers.

We got there and the audiologist told us she wanted to do some hearing tests on him with his hearing aids on. I thought it would be really helpful to see how he would do. Unfortunately there was some sort of software glitch (identical to the last visit). This meant the majority (45 minutes) of the appointment we sat in her office while she was on the phone to the hearing aid company's tech support, this left no time for testing.

Last appointment I was told they were on very low. This was to get him used to wearing them and that the adjustments would be a gradual process.  At home we listened with these hearing tubes that you can fit over the piece that goes in his ear to test them and indeed it was barely amplified. Yesterday I was told they were actually at 80%. This just seemed strange to me. They are now adjusted to 100% and they do seem quite loud. Little guy seems pretty unphased by this which is wonderful.

We were also informed by our audiologist that this particular hearing aid doesn't exactly cover the frequencies of his hearing loss. She's going to order different ones that will be better suited to him. This is great but I can't help but wonder why they weren't ordered in the first place ~ the results from hearing tests haven't changed. A few more little things occurred that just didn't feel right.

To be fair she seems to be a very genuine and caring person. I put a call in to her today and am awaiting a call back to go over yesterday's uncertainties and clarify the questions that were raised but unanswered.

It has occurred to me that it is hard to ask someone questions when you just don't know what your supposed to be asking.

So here we are living and learning. Thanks for taking the time to stop by and for joining me on this journey.

On a happy note here are some photos from our Easter day. We all really enjoyed the beautiful Spring weather and their first egg hunt.

Beyond Expectations

Just an update ~ Day 4 here and Little guy's comfort with his hearing aids has really been beyond expectations. Today is the 3rd day that he has worn them the entire day (with the exception of his nap). I'm absolutely amazed. Yesterday after a little bout of wrestling with his sister he came up to me pointing to his ear. I was quick to frown at him & shake my head "no" I was sure he was about to pull them out. I checked to see what was going on and noticed the hearing aid had come up over his ear. He had come to tell me to fix it. This morning when we came downstairs he pointed to his ears. I do believe he was telling me to put them in.

I called the Audiologist to report the good news and see if we could get them adjusted in 2 weeks rather than 3. She was surprised, pleased and agreed to see us in 2 weeks. She didn't however have an apt until 4/16 ~ ugh! Hopefully there will be a cancellation and we can get in sooner. 

On the quest to find out as much as I can on how to raise a hearing impaired child, I've come across some great new blogs. I'm interested in the day to day and soaking up what I can. There's so much to be learned and I love reading about this though the life experiences of others. 

Sunshine

Big thanks to Jen over on Olive Street Studio for sending some Sunshine my way. What a wonderful bloggity friend. I'm hoping for some great things to come her way and very much appreciate her thoughts.

Today was a sunshiny day. I started off by having little guy try out his hearing aids. I didn't want to fuss him up by putting both in (I'm new at putting them in so it takes some wiggling on my part) so we began with one. This lasted 26 minutes (I'm logging my time). Not too bad. We were out and about in the car so he did not have them on (I can't keep him from touching them while I'm driving) until we got home. I put the other one in by itself and this lasted 53 minutes.  A few hours later I took the plunge and got them both in. This lasted....

3 Hours 25 Minutes!!!! 

Wow! I am so freaking excited about this. I only took them off because it was bath night and I wasn't going to have him watch the bath fill up with them on. When I called my husband to tell him he sounded almost tearful. We just want this to work out so badly. The volume is set really low and the Audiologist told me she would adjust this in 2-3 weeks. Hopefully it will be more like 2 weeks. The next adjustment won't be full volume either.

They are really hard to see (he does need a haircut though) and the ear molds are clear.

 I actually had to go over and touch the sides of his head to be sure they were still there. (and they were!) 

Yay Little Guy!

Rome and Impatience

So I'm learning that I'm not a very patient person. I'm also learning that I'm going to have to start being more patient. Trying to remind myself "Rome wasn't built in a day".

Finally had the appointment today. In my eagerness to get the appointment I failed to consider the time ~ 1pm, my little guy's nap time. Needless to say he wasn't very cooperative. Apparently this is to be expected, in fact the next 2-3 weeks are just going to be all about getting him used to his hearing aids. As not to overwhelm him they are adjusted on very low. 

He's only to wear them if I am right with him and can be certain he won't pull them out.  Short amounts of time and as often as possible. It was suggested to try some m&m's for a reward system and I'm okay with that (it worked to potty train my daughter). Other than that, well I'm on my own!

Here's what I was given ~ the hearing aids,  a cleaning kit, a drying case, some sort of testing tubes, covers, a cute mouse that has removable hearing aids, and lots of literature. 

Here they are ~ the are very light, unobtrusive, and hopefully when we get used to them they will work well.

So today was a total wash. He was cranky and out of sorts from not napping so I wasn't about to wrestle them on him.

Tomorrow. Tomorrow is another day.

Did I mention that I was impatient?


*and an insurance update. Apparently I'm "lucky" that my insurance is covering anything at all. Typically insurance policies don't cover hearing aids (seriously can you believe that?). The amount they do cover isn't very much though. On the agenda for next week - hunting for some sort of loophole we can use to our advantage.

Life's Unexpected Twists and Turns

My little guy is going to turn 2 next month. He's the sweetest (and wildest) little lovebug. Everywhere we go people always comment on his dreamy blue eyes. It can't be denied they are something ~ and he's lucky he is so cute as he is into everything.

His been slow to pick up speech and been getting speech therapy for 2 months now. The early intervention programs really are great. At their recommendation we've had his hearing assessed. Results of  basic testing were not good, we followed up with an Ear, nose, & throat Dr. who then sent us to get an ABR to determine what he is and isn't hearing.

An Auditory Brainstem Response (ABR) sounds scarier than it is. The sedation was the scariest part (he is way to active to sit quietly for 2 hours of testing) but it went well.  Basically electrodes are placed on his forehead and behind the ears and ear phones play sounds into his ears. They can then see what sounds his brain is responding to.

We had this test done 5 days ago. When the audiologist kept checking the ear phones I pretty much knew it was not good. I held him while he slept through the test and cried. Little guy has moderate to severe hearing loss in both ears.  He's going to need hearing aids. Definitely a shock. Aside from the lack of speech he is so outgoing, curious, and very interactive (aka into everything) so the results were unexpected.

His 2nd birthday is coming up in the middle of April. On the way home I decided my goal would be to get him hearing aids in time to hear us sing "Happy Birthday" to him.  In the car I called the hearing center where he had his initial evaluation done.  Somehow I managed to get an apt for 2 days later. He's already been fitted for his hearing aids and our next apt is at the end of the week when his hearing aids should be in.

I've been working on putting this into perspective. In the grand scheme of things it's really a drop in the bucket. Knowing how smart, curious, and active my little guy is I'm confident he'll be fine. At this point I can't wait to see him fly as he is finally able figure out what we've been saying to him and he learns to speak.  I'm taking things step by step and right now I am so looking forward to this.