It’s been 6 months and 1 day since Devin was born. Nat has some beautiful pictures up on her blog from the day. The ones in the entry captured me, and the entry is so beautifully written. What really caught me, though, is the new avatar picture in the menu of her website.

The pain in her eyes makes me cry. It makes me angry. I can’t think of anyone who deserves this less than she.

Happy half birthday, little guy. Thanks for the help watching over your mama. I wish you were here.

So earlier this morning, I was at the computer playing around and eating a quick breakfast. Eric was sitting at his table coloring, and Danny was on the floor reaching up and playing with his lion on his baby gym. Eric finished coloring (he only colored on the paper - nothing else) and put the lids on his pens, then brought them to me before going to play with a puzzle. Danny rolled to his tummy and started doing some awesome tummy time.

I thought to myself - wow, my boys are unreal.

An hour later, Danny’s asleep in my arms, and Eric comes over, rips his diaper off, and announces, “New diaper!” He drops the diaper to the floor, says “Ewww,” and runs off. I have to put Danny down, which wakes him up. Suddenly, he’s screaming and crying, Eric’s running around naked with poop smeared all over his butt laughing at the top of his lungs, there’s toys everywhere, and I don’t even know where to start.

Guess my boys are real, after all!

Danny’s starting to make new noises! This is a great step forward as far as his cognitive development goes, which is something always to watch with his medical history. However, they have very little to do with hearing. A month or two ago, one of my chats with the ladies at CID was about how all babies instinctively coo, and then deaf babies move to more guttural noises because they give more physical feedback than just “goo” and “ah” does. Well, Danny’s there - it’ll start with “goo” and then transform into a “ggggggg” noise in his throat. It’s hard to translate into text, but it’s definitely what she was referring to, absolutely something that’s giving him a new feeling. It’s kind of cute.

Of course, this comes at a time when I find myself needing to retract a little from my April due date mommies group again. The reason? Again, baby sounds. Hearing-baby sounds. Now, I’m going to say this as an aside. I am honestly in a pretty good spot with Danny’s hearing loss. I feel about as positive as one can, I think, in this situation. I know there are fabulous resources available to us. I know we’re doing the right thing with the right people. I know, years from now, we’ll look back at everything we’re doing now and be glad for it. That does not, however, mean that it is easy 100% of the time. I open up the forum, or the blogs of the ladies on the forum, and am starting to get little reminders. “He said MAMA!” “I’m trying to get her to say mama first. My husband is trying to get her to say dada first. We’ll see who wins.” “When I sing this song, my baby tries to ’sing’ along!”

A part of me gets very excited for when we get there - and I know it won’t be for a while yet, but I know it will happen, and that alone is such a miracle. But a tiny part of me just sighs. That should be me too.

And it should be Nat, too. 6 months tomorrow. That’s just crazy. Any time I start to feel down, I think of Devin, and realize how blessed I am that Daniel somehow pulled through the incredible illness he faced and did not suffer the same fate.

In other news, we get new molds again next week, and I’m looking forward to it. One of them is starting to whistle again. Also, I got an email yesterday from the audiologists at CID saying they have decided what kind of hearing aid will be best for Danny and are getting ready to hook him up with his personal ones! She wanted to know what color we wanted. Exciting stuff!

So, cochlear implants. It isn’t somewhere we’re going with Daniel yet, but we’ve been told from the start that it’s a possibility, maybe even a probability, that he will need them to reach his full potential hearing due to the severity of his loss. There are always those children that surprise you and do better with hearing aids than you think they will. We don’t know, yet, if Danny is one of those.

Anyway, cochlear implants don’t pick up music the same way a normal ear does. They only have so much range of frequency that they can pick up, and it is much less than a normal hearing ear can. There’s a storm in the world of CI blogging right now about a non-profit organization that is in a contest hoping to win a grant to help them compose and create music specifically for those with implants. You can vote for them here.

As someone who is so absolutely in love with music, and in love with my son with a profound hearing loss, this is pretty darn cool. Here it is in their own words:

Cochlear implants are surgically implanted electronic devices that provide a sense of sound to people with profound deafness. However, many aspects of sound, including pitch and timbre, are almost entirely lost in the process, making it difficult for cochlear implant users to enjoy music.

Music For New Ears is a non-profit collaboration between composers, hearing scientists, and cochlear implant users. We identify sounds that C.I. users can hear with the most clarity and use these sounds to compose new music.

Our mission is to help cochlear implant users better enjoy music by creating music specifically for them and the unique way in which they hear.
What will you do if you win $10,000 for this idea?

1) Pay our primary composer to create full-length music compositions for cochlear implant users.

2) Recruit C.I. users to provide us with valuable input during the composition process.

3) Arrange live performances for audiences of C.I. users in Boston, MA and surrounding areas.

4) Organize a national contest for composers unaffiliated with our organization to create their own pieces of music for C.I. users, with a grand prize of $1,000.

We have everything in place and we are eager to begin working. We simply need the funds to get started.

Sound cool? I think so. Votes can be placed here!

Eric has been getting more and more interested in what I’m doing in the kitchen. Any time I’m in there cooking, he is right at my side. “Cooking! Hot!” “Don’t touch, Mommy - hot!” “Waffle? Cook waffle?” I’ve started giving him his own bowl and mixing spoon, plus a measuring cup or two, and it pacifies him a little but not a whole lot. He wants in on the action! Of course, a lot of the cooking I do is skillet stuff on the stove top, which isn’t a very toddler friendly zone. Something about open flames and little hands doesn’t mix well.

I went shopping the other day after work and picked up a few things for him to help keep him busy in the kitchen while I make supper. Monday morning, Danny went down for his early morning nap (the kid takes one at 7am pretty much like clock work when we’re home), so inspired by a few other ladies on my mommy message board, we went to work!

Eric presents: How to Cook “Waffles” (Muffins)

First, because Mommy is too lazy to make muffins from scratch and babies only nap so long, you have to put the mix in the bowl. You might spill some onto the table. That’s OK. In fact, that’s kind of fun.

Next, you pour in the milk! Don’t try to take a sip - Mommy doesn’t like that very much. It’s pretty cool to see it go into the bowl anyway.

Stir it all up! Refuse all help; you can do it all by yourself. Even if Mommy thinks it needs a bit more stirring, refuse to give up the spoon at all costs. It’s a trick!

You can finally give up the big spoon when Mommy gives you a little one. This is the tricky part: you need to use this little spoon to put all this stuff into tiny little bowls. Why doesn’t matter, because it sure is fun!

It’s always important to clean up after yourself. You get lots of cheers and claps from Mommy when you do this, and sometimes even a cookie.

Now they go into the hot! Any time you deal with the hot, you have to wear your mitts. No matter how much you tell Mommy “don’t touch,” though, she’s going to do this part for you.

Waiting is hard, so make sure you find something really fun to do while you wait. Bubbles are a good choice! Books, trucks, or kitty chasing is also acceptable.

Finally, it’s time to take them out of the hot! By now, you’ve probably lost interest in your special cooking clothes. That’s OK - Mommy’s slippers make good mitts. Again, you tell Mommy “don’t touch,” and again she doesn’t listen.

After even more waiting, it’s finally time for the most important step: you have to taste them!

They sure are good!

Actual age: 5.5 months
Corrected age: 4.5 months (1 month premature)
Hearing age: 2 weeks (since he got his hearing aids)

Yeah. Is it any wonder I have no idea how to judge his development?

I think I’ll just stick to Daniel age. He is what he is. Get back to me a couple years from now and I might be able to tell if he’s on track or not.

Eric absolutely loves music. He tries to sing often, which is adorable considering the kid doesn’t have the words and can’t carry a tune. “ee ee ee ee, up ah ah ah” is the itsy bitsy spider. “bus wheels” is the wheels on the bus. He makes requests. Or sometimes, I’ll start to sing, and it’ll be a very critical “no sing song!”

As much as he loves to sing and be sang to, though, he loves to dance. He still does the toddler dance - butt out, arms out, it’s truly hilarious. I try to get a video but, of course, the second I get the camera out he stops and won’t start up again. We dance together sometimes, crank up the tunes and get silly. It truly is a “dance like no one is watching” moment, though really who cares who’s watching, I’m dancing with my toddler.

Eric doesn’t need help dancing, though! John was playing some music on the computer the other day, and Eric ran over, put his hands on the arm of John’s chair, and started to dance. The music ended and it was “more! more!” More music, more dancing. I got in on the action and it was all silliness. We cranked it. I grabbed Danny, and we three danced, much as I danced with Eric when he was a wee one. One of those totally silly, endless memory moments.

It didn’t hit me until later that this was one of the moments I feared missing with Danny. We have a lot of listening moments together, especially on the weekend, but some of the ones I enjoy the most are in our best time, that one-on-one time when Eric and Daddy are upstairs napping. We play, we talk, we read. I turn the music up loud, loud enough I’m pretty sure he hears it, and we dance.

I love it.

This website is pretty darn awesome. There’s a lot to it, but it’s all very interesting, at least to me.

I’m really not sure what to make of Danny’s hearing aids some days. They have been doing great lately - we kept the old mold on the right ear and have a new mold on the left, and with enough goop (technically oto-ferm, we call it goop) they’re doing quite well now for feedback. John and I were talking last night, though, and we both feel like we aren’t really seeing anything. I know, on paper, he is hearing and reacting within the banana - but we really don’t see him reacting at home. The aids are on and working, I check them, they do squeal when we take them out … but every time either of us are asked how he’s doing and how he’s reacting, we both come up blank. Yes, he startled at a slammed car door the one day. He hasn’t done it since, though, and I’ve been testing though I know I shouldn’t. I can’t really say he’s engaging any more than he used to when spoken to. Maybe we just don’t know what to look for?

The only thing that comes to mind is that I do think he’s babbling a little more than he used to. But then I think, well, he’s getting older. Maybe that’s just normal. We are fortunate that he’s remained vocal, and I think it’s because we both make a point of visibly and strongly responding when he does talk to us. So he knows it gets attention, and he does it more. Is it because he hears? Don’t know. Just don’t know.

It all brings me around to wonder if I’m doing enough. I’m trying to build up some time at work so that I can leave early Friday and visit with our hearing lady when she comes to the house - a monumentous task considering I spent all Monday morning at audiology. But I think I’ll pull it off. I want to ask … how much time should I be spending actively with him? I mean, of course, he’s always surrounded by sound. I talk to him all through the day about what we’re doing. That sort of thing. But should I be spending every waking moment of his talking directly to him, pointing things out, reading books, singing songs? Am I hindering him by taking a few hours in the evening to watch TV or play a game or read online and just keep him with me, pausing to talk to him or play with him a little? We spend time actively together in the evenings too, it’s not like I get home and ignore him all night long, but you know what I mean. On the weekends, we play together and do things together of course, but there is also a lot of time where we do our own thing, and Danny will be either on the floor or sitting in my lap just chilling with me. Both of my kids have shown preference to being alone at times, and I think it’s healthy for them and for us to encourage independent time. But is it hurting him to not have that stimulation during the independent times?

I sometimes think I think too much.

I know I’ve mentioned it, and if I haven’t, I’m bound to: the one, the only, speech banana.

I first met the speech banana sitting in St. John’s audiology when they told me he was deaf. At the time, it went right over my head, to be quite honest; I was processing a lot of things at the time, and the least of those things was produce. I have since run into it many times on my wanderings through the Internet world of the deaf and hard of hearing.

What’s so great about this sound fruit? It’s the range of frequencies that make up human speech. Left to right is frequencies low to high, top to bottom is decibels, and the funky banana in the middle is where talking happens.

I’ve often mentioned where Danny’s loss falls - the 90dB range, changing slightly depending on how awake and alert he is (he tested around 85dB two weeks ago, around 110dB today, but it was at the end of a lot of testing and he was super tired). This diagram gives that a bit of meaning. His loss is, obviously, well beyond the range of speech. Lawn mowers are about the best he can hope for on a good day.

The stars on the chart are my own addition, and they are where he tested today with his hearing aids on. We didn’t test the highest frequencies (4000+) as we have dampened those for the moment to reduce the feedback he’s been getting; it doesn’t hinder his hearing speech much, and it’s a lot better than just not having the aids on because of constant feedback.

Those aren’t bad stars at all for only having the hearing aids 2 weeks! He is definitely hearing speech, maybe not every little consonent and maybe not as loudly as we want him to, but he hears it. Even a whisper is better than nothing at all. It’s common to see the higher frequencies drop, because it’s harder to amplify them and harder for the ear to pick them up, so that’s normal.

Of course, there is still a long way to go, too. Even with the hearing aids on he is classified as a moderate to severe loss. (Compared to profound with them off.) She did broach with me today that there is a possibility we may “top out” on the benefit hearing aids will have for him, leading to a need to look at “other alternatives.” She said we aren’t there yet, though, he is still learning how to use them and we’re still refining them with everything that is changing. We want him at least around the 20dB level - you aim to be above the banana.

In other news, we got new molds today. The new right one didn’t work so great, so we’re keeping the old right one and the new left one, and we’ll see if it’s any better for feedback, combined with the dampening of the high end frequencies.