Filed Under (Year One (Daniel)) by Kel on 17-03-2009

Yep, that’s Danny – the big O-N-E. His birthday was almost a week ago already, and he loved it so much he was out cold by 6pm to sleep for a good 12 hours. He partied hard though, including a cupcake that he had absolutely zero interest in, and definitely needed the rest! Unfortunately, since then, he decided to get sick over the weekend; I’m glad to say he’s over it now, knock on wood, but he was throwing up for a weekend which is oh so enjoyable.

Gosh, how far he has come in a year. He’s doing things some CMV babies never do. He’s almost crawling, and definitely moving deliberately all over the room in a strange combination of rolls, army crawls, and the occasional lunge forward from hands and knees. He seems to be getting brighter every day, trying to figure things out and get them to go his way. He’s hearing – hearing! Words can’t describe the feeling.

Early AVT is proving not as hard as I’d feared. Of course, maybe we’re doing it wrong – ha! But it seems so natural, just talking to him and feeding him language. Of course, right now is the “easy” part, as he adjusted and learned what sound is. It’s amazing the discoveries I have made, personally, though while helping him discover sound. Stop for a moment and listen, just listen. What do you hear? A year ago, I would have said nothing, just the radio. Today? I hear the radio, I hear the hum of the lights overhead, the TV in the lunch room, the hum of the machinery on the roof…there are so many sounds everywhere that I’m becoming aware of.

And oh, the returns. Twice this week my throat caught. Once, Danny turned to a rather quiet toy of his when his daddy snuck up behind him and sounded it behind his head. And then the parade… See, shortly after Danny was diagnosed as deaf, we went to a parade. Eric loved it. Danny slept in his carrier the whole time, and I kept watching him as the music played and the car horns sounded, willing him to react. There was, of course, nothing. This weekend, we went to a St. Patrick’s Day parade, and shortly upon arrival Danny decided to fall asleep in his stroller. Well, his implants were on, and I believe in letting sleeping babies lie, so they stayed on instead of fighting with his hat, coat, etc to get them off. I didn’t even really think about it much, I was watching with Eric, but I couldn’t help noticing Danny startle a little in his sleep when the first horn blew. Oh gosh, I nearly burst into tears right there.

Of course, CMV sucks, and it isn’t all perfection. We’re talking possibly adding OT in a few months to his rounds of therapies; his fine motor skills have the same delay his gross ones do. It isn’t reason to be concerned yet, but he doesn’t tolerate any table food, it’s still all stage 2 and 3 purees. (I blame myself for that one, haha – all my saying he was eating so well there was no way he’s develop eating issues, so now he just wants to fake me out a little.) We aren’t sure yet, but his PT mentioned his feet turned in a little and she was going to keep an eye on him to see if he might not need inserts for his shoes. Really though, those are little things. He is doing so, so well.

Happy birthday, munchkin.

Oh, and the stats – he is darn near 20 pounds, 29.25″ tall, and a head circumference of 18 inches. His height and weight are both 30-35th percentile, gaining more ground on the charts, beautiful things! We also saw his ENT this week and he said everything looks great. There was a bit of fluid behind his ear drums, but he’s got a cold, and it wasn’t infected…so he is not really concerned at this point. We’ll go back in the summer though to take a look and see if we want to put his tubes back in.


Filed Under (Year One (Daniel)) by Kel on 03-03-2009

Things I didn’t know this time last year:

Even the most uncomplicated pregnancies end in tragedy. Stillbirth is not something that only happens early and to very sick babies or mothers…it can happen to anyone. Even the least deserving people on the face of the planet.

Nat is the strongest person I know. I had an idea…but not really.

What CMV is, and that something so devastating can happen without anyone having a clue.

The NICU sucks – and is so amazing. NICU nurses are true angels, and the miracles that happen every single day are incredible.

There are thousands upon thousands of deaf children, and that hearing loss isn’t just something seniors have to deal with. I had no idea kids wore hearing aids, had progressive losses – really, I knew nothing about hearing loss other than it existed.

What a speech banana is.

What a cochlear implant is.

There is so much love on the Internet, and so many incredible people that rise up when the need is there. Again, I had an idea…but not really.

Having a special needs child is not the end of the world. In fact, there are some pretty amazing things about it, no matter how much it can suck sometimes.


Filed Under (Cochlear Implants, Year One (Daniel)) by Kel on 06-02-2009

Danny’s activation is in a little more than a week, and he’s a little more than a week out from surgery. He has been having a phenomenal recovery, other than a virus he picked up and caused a short fever (and plenty of worry). It was something shared by John and some of the kids and teachers at daycare, and lasted barely at all, so I am celebrating its leave!

I find myself becoming increasingly emotional as activation day comes. There is a lot going on right now! Of course, it is a big day we are coming up on; I know to keep my expectations of the actual activation low, as there is no way to know how he will respond, but it is an exciting day in our journey all the same! To think, after that day, he will hear when I talk to him, hear the stories and the songs… OK, so in the beginning all he will hear will probably be beeping, but he’ll (hopefully) get the idea quickly enough. Wow! I can’t wait.

We’re also coming up on the anniversaries of a lot of craziness. I realized the other day that is has been almost exactly one year since I came down with CMV and, unbeknownst to me, our lives changed so dramatically. Activation day, February 16, is the same date as Nat’s baby shower, when I was visiting her and we were so happy and excited and clueless to the bizarre and tragic fates awaiting our babies. Then, of course, will come the second week of March and the boys’ birthdays. There are a million different emotions all lumped together in one there.

Amazing, how far we have come, what all we have learned in just one year… and what all Danny will begin to learn in just one week.


Filed Under (Year One (Daniel)) by Kel on 05-01-2009

Random note for today: Danny’s new babbling is “buh buh buh” – his first consonant!


Filed Under (Year One (Daniel)) by Kel on 24-12-2008

I noticed, today, that I have been doing a horrible job of tracking the normal appointments Danny has. Of course, there are therapy sessions galore that I tend not to detail, but how can I forget things like his well checkups?? Shame on me.

Danny had his 9 month checkup – yes, 9 months! We won’t see his pediatrician again until after his birthday! (Unless he gets sick, of course, but with surgery in the coming months that is not allowed.) Have I mentioned how fond I am of the boys’ doctor? That guy is awesome. He made me feel much better about Danny’s development as we went through what he is currently doing. He is of the mind that Danny’s right on track and doing great, and in such a matter of fact way that I have a hard time denying it. Being a second time mom, he didn’t do too much on the food end of things – he asked what Danny’s eating and then just nodded, no mention of where to next, just affirmation that yep, I still know what I’m doing. I feel a lot more like a partner than a follower with this doctor compared to Eric’s old pediatrician, probably in part the doctor and in part simply that I’ve been here before.

He’s up to 18lb 7oz, with a length of 28″. Both are now in the 10-25th percentile, just like Eric always is! He’s certainly caught up there. His head circumference is 17.5″, again 10-25th percentile, up from 5-10th at his 6 month checkup. Considering the concern with CMV and restricted brain growth, that’s pretty excellent news. His growth curve along all 3 is beautiful.

There was only one vaccination – wow! – and we had the joy of bagging him for urine. Yes, bagging him, as in I was sent home with a little sterile cup and instructions to bring back some pee. The reason is to test to see if he is still shedding CMV. It’s been 9 months, and it’s possible, though not all that likely. It’s something that’s very good to know, though! We’ll find out … sometime. I’m not sure how long it will take to get back the results with the holidays.

Another way he’s just like big brother is that he is getting his first teeth for Christmas! Yep, Eric got his two first front teeth right around Christmas, and now Danny has his first tooth poking through his bottom gums. All they want for Chrsitmas… Yep yep yep.


Filed Under (Year One (Daniel)) by Kel on 03-12-2008

Just in time for Christmas, Danny’s hit a growth spurt that has shot him up into 9-12 month clothes. He seems a wee bit tall for the 6-9 month all of a sudden. So if anyone is wondering for Christmas, 9-12 month long sleeved onesies would be fabulous.