The first step - The Doctor's visit.

We have this funny spinning pie chart thing for the developmental stages on our fridge I got while I was pregnant with Tiny. It had "typical milestones" and also a section letting you know that some kids develop faster and might be doing such and such and some kids were slower to do things and that was okay to.

I would walk by it almost daily and fix the part that spins to be on the wedge of Tiny's age because Bug liked to sit and spin it. Every time I would walk by it in the first months, I'd notice where she was right on track and where she was a little slower. First I worried about crawling and walking, because she did those a little later, but then things seemed to be on track for a wedge or two. Then I started to notice that while she was right on track with the physical milestones, she was slipping farther and farther behind with verbal skills.

So, around about the time Tiny turned 2, I turned the wedge to see where she should be at and my heart sank. She did not have even close to the number of words she was supposed to have by her age, she didn't even really have all the sounds and words from the wedge before it.

Not long after this realization, I made an appointment with the pediatrician.

When I called to make the appointment I was informed our pediatrician had moved and was asked if I'd like to see the recommended pediatrician instead. I really liked the doctors in the office I had seen myself so I said sure.

The day of the appointment came and I loaded my two girls up, let them play with the toys in the office with a cringe, honestly wondering what other germs we might be picking up from them, and filled out the forms. We waited, were taken back to get the pre-evaluation by the nurse so she could sum up my concerns to the new doctor and we waited some more, my girls getting more restless by the minute and me more nervous.

I kept wondering if I should even really be here, or if this "new guy" was going to think I was over reacting, that everything was fine. Another part of me was quietly sure he was going to deliver bad news.

It turns out I knew the new doctor, Dr. P, or of him, since I taught his son in church. He was often on call, so I really only knew his name and face. He came in, reviewed the chart, shared pleasantries, asked a few of the standard first visit questions and then asked me what my concerns were. I managed not to be irritated that I had just told the nurse and while I talked, he started to check Tiny out while she squirmed on my lap.

The conversation went something like this:

Dr. P is checking her heart, looking in her ears etc and nodding as he listens to me spill my guts.
"Well, she isn't talking... really. I'm just concerned. Her sister was a really big jabber box, and I've tried really hard not to compare them, because I know you're not supposed to but I just feel like there is something going on. People in our family said not to worry because we have a history of late talking on both sides, but both of those were boys and I know boys tend to talk later. I've also tried to not let her sister talk for her, because she does quite a bit, so I'm concerned it's a habit of not talking because she's used to having her sister do it. She's also really sassy, and a big tease so I've wondered if it's just an attitude thing, because if we shout her name or clap loud she'll turn so I'm not sure it's her ears but.... I think it might be her ears. We do have a nephew who had ear infections so bad his eardrums burst, but his parents didn't know because he was older but never complained. He seemed to have some of the same things with ignoring his parents so they took him in and it turned out he had extra skin grow over top of his eardrums so he had to have them burst and the skin removed, but he's been fine since and I don't know if that's genetic, but like I said, I'm just worried there's something wrong with her ears."

More nodding as my keys fall out of my lap and Tiny goes for them.


"Well her eardrums are clearly visible, there isn't a lot of buildup in there, and they don't look inflamed or damaged in anyway. Has she had a lot of ear infections that you'd be concerned about that?"

Tiny making a lot of noise while shaking the keys around and smacking them on the leg of the metal chair and me getting out a snack for her and Bug, who is tugging at my arm telling me she's hungry while I'm trying to keep my thoughts in order.

"Not that we know of. She had one that was treated here by Dr. (Old Pediatrician) with antibiotics when she was between three and six months, but other than that, just usual kid stuff a runny nose occasionally and she had croup a couple of times, but she's never really tugged at her ears or seemed to be bothered by them."

Dr.P nods some more and tries a few things.

"Well, I can't say for sure, but her ears look clear. There isn't any scar tissue I can see, but I can't test her ears here to see how they are working or for fluid behind her eardrums, but from all you've told me, it sounds like an attitude problem to me. I recommend we get her into early intervention and speech therapy."


Now I'm the one nodding, trying to feel relieved by the news as he gets a card out with the early intervention people's number on it while he tells me about how great they are and the success other patients have had over there. I take the card and thank him for seeing us.

I let his opinion reassure me, he knows what he's talking about, I'm just a worry wort! Thank goodness!

But then even as I'm leaving and loading my kids up, I can't completely shake the feeling that he's wrong. I tell myself it's just me, and even now I feel regret at letting myself be lulled into a false sense of ease for a few more months, even if they might not have made a difference.

I do not blame Dr. P for all that came after this. He is still a really nice doctor and we've seen him since, but Doctors are busy and even if they see you regularly, they aren't going to know or remember everything from visit to visit. I believe he honestly felt there was nothing wrong with my Daughter, but I wish when he told me he couldn't run further tests I would have requested he refer us to someone who could. I will be honest and say I know a part of me wanted nothing to be wrong, to just be the overprotective and worry wort mom and for him to be right.

He just wasn't.

I wish I wouldn't have had to learn these lessons with my child, but I have learned that I am the only one that can, and will, and has to advocate for more for her. She can't advocate for herself at this young age, and in general, the Doctors aren't going to. If you feel they've missed something, ask questions, explain your concerns again, and do not be afraid to ask for referrals. I've learned to take questions in with me, to ask them. Then to ask at the end of every appointment if there is anything else I should be looking into and researching, or if there is anyone that they can refer us to that could answer any lingering questions. If the doctor you are seeing doesn't help, get a second opinion, or a third if you need to. You know your child, you have been given instincts.

I was with Tiny almost every minute of every day. I knew her. I knew what I was feeling and even when I tried to ignore it as an attitude problem for awhile longer, I knew it wasn't. I knew what I needed to do to have real peace of mind, but I was oh so scared.

An Introduction ((And a preface))

It took me a long time to come to the decision to share our journey, but in the last few weeks I've felt a really strong need to unburden myself through writing. I know it's for me, but part of me hopes that if someone stumbles across this blog, or is referred to it during a similar journey, that they can find answers or comfort or just a feeling of camaraderie.

A little background. I have two beautiful daughters and a easy going husband who I love and who make my life full with adventures. I'll refer to my girls as Bug(5) and Tiny(3) as those are their nicknames around here. Tiny is the main reason I'm writing this blog, as at the age of 2 1/4 she was diagnosed with severe to profound hearing loss.

I'll give you a little background.

Tiny wasn't a surprise baby, but she was a difficult pregnancy for me. I was sick 24 hours a day for about 6 months, and on top of it, her dad was gearing up to deploy and then did, just as I started feeling better. She was actually born while he was gone and he saw her for the first time via Skype and he met her for the first time at 3 days shy of 2 months of age. She wrapped him up just as thoroughly as her big sister before her.

She was a full term baby with no complications and and "uneventful birth." She passed her initial Otoacoustic Emissions (OAE) test- which is the hearing screening for newborns, and grew and developed normally, though on the petite side. She wasn't super interested in crawling and walking since she loved to be held, and still does to this day. Becoming mobile was motivated by realizing she could get to the things she wanted to climb, which she did on the highest places she could get while my back was turned.

We realized pretty quickly that she was also a lot quieter than her big sister when it came to talking, though she did babble and would frequently force you to pay attention to her so she could shake a finger at you and make faces or put her hands on her hips or just make us watch her pretend to talk on the phone. She's all sorts of sass with the right amount of sugar most of the time.

When she did start to say things at around a year they were always surprising, and rarely repeated. She told me "Shoe's on" and her Dad "Go fishin" one time and one time only. She would say "I didit" on occasion, Ma and Da frequently, and make other sounds or random words frequently, but it was like pulling teeth to get her to say things.

We had done some baby sign with her, but she would shrug us off most of the time and point and throw a fit until we understood what she wanted.

At 16 months, I started to really be concerned and finally started to voice my concern to a few family members. "She won't turn unless I get loud. She doesn't really talk. I can clap my hands and she only looks at me and turns away most of the time."

The answers I got back were things like, "I wouldn't worry too much, she's a second child and Bug is a big personality and talks for her all the time, make her talk and tell her sister not to talk for her and she will." "Oh, don't worry about that, we have a history of late talking in our family."(From both sides there were brothers that didn't talk until a later age.) "She's just sassy and likes to ignore you because she can see she's getting a reaction out of you. Don't react and she'll learn to listen." And many other things that were meant to be reassuring, but only left me doubting my sanity about it all.

I tried to listen to all of the "don't worries" and the "she's fine's" but something kept nagging me in my gut, telling me there was something wrong. Had she been sick and we didn't know? Had my Tiny been hurt because I had been ignorant of signs I should have looked for? Had she bumped her head? Had I done something to her unintentionally hurt her while we were playing? Had she eaten something that had somehow messed up her brain? Was I not trying hard enough?

At 18 months I noticed she had pretty much stopped saying new things and just before her second birthday I finally decided I was done listening to other people, no matter how well intentioned, and have her go in and be checked out and that is when this journey really began.

((Preface: Some of you may be asking yourselves, Why didn't you voice your concerns to your pediatrician? At the time, the pediatrician we had started with had left the doctors office we were used to going to and I admit, I didn't look into who replaced him right away. We also didn't have great insurance at this point and my husband was still working on a degree and didn't have a great job so we couldn't afford doctor visits when for all intents and purposes our daughter appeared healthy.We also try to deal with things naturally at home if we can, and in general we are healthy folks who only go to the doctor when we really feel the need. This is our choice and I recognize it is not the choice a lot of people make. I hope you can respect that people have different ways of going about things. I respect your choice to do what you want with your kids and hope you can do the same. As it turns out, going to the pediatrician didn't really help us in the grand scheme of things, but I'll talk about that more in my next post.))