This blog is in honor of our 3 year old son, Ellis, who was born congenitally, profoundly deaf. I've been blogging a bit about it here and there on my my personal blog. But as we have gotten to know more about Deaf culture and even CI culture, we've decided to create some space devoted to our experiences. All the previous blog entries have been imported here, so we are picking up where we left off with my former blog, "Moot Thoughts and Musings."

Briefly, Ellis was born in June 2005 and failed his newborn hearing screen. This came as a bit of a surprise, since we're a hearing family with no history of hearing loss. As soon as we realized what was going on and got hooked up with early intervention, we began to sign with him, to seek out Deaf adults to learn from, and to become involved in our local School for the Deaf. When Ellis was two we made the difficult decision to get him a CI. He has one CI in his right ear and does pretty well with it. He attends preschool at the local Deaf school, where he is part of a bilingual classroom. He gets instruction in spoken English and in ASL. He signs very well, if I do say so myself. He also gets weekly speech therapy sessions at our local children's hospital, and we totally heart our therapist.

We're still working out a few design aspects to this blog. But we're happy to have you begin reading!

Mommy's perspective: A staggering cascade of sprinkles, which sends the cookie decorating venture up to carnage status.

Ellis's perspective: SNOW!

See my boy's bright blue eyes? They're perfect. We had this confirmed today by an ophthamalogist. An appointment that I've been putting off for three years. When he was born deaf for no obvious reason (family history, illness, etc), there was a list of tests we were supposed to get done to rule out: an EKG, a urinalysis (for the kidneys), a MRI, an eye exam, genetic consultation. Well, we did it all except for the eye exam. There are some conditions that affect both sight and hearing. He never had trouble seeing, and I kept putting it off. I made the appt a few times, but had to cancel for some reason or other.

But then this little thing came my way that made it impossible for me to put off any longer: the school form. So we made the appointment and this morning traipsed on down to CHOP. Ellis did very well. He was a little nervous at first, but overall enjoyed getting his eyes examined by a cool light much more than, say, the hearing booth, for instance. And the dilation didn't seem to bother him too much either.

We are all tired, though, and came home a cranky lot. A few last minute things to do before we can enjoy the next couple of days. Some things will be put off until next week, like that trip to the post office that was scheduled for last week while I lay in bed with strep. *sigh* We're looking forward to a fun, relaxing time enjoying our families.

Some days I can't Ellis out the door fast enough. I hear the school van beep his arrival, and I am all about getting that three-year-old OUTTA here!!! They say he's much better behaved at school. I guess he knows who has to love him unconditionally.

There are other days, though, when it breaks my heart to say goodbye to my little boy. I felt like crying as I waved goodbye to him this morning. As much as he loves school, I think he was a little sad to go, too. I had kept him home yesterday, because I was hosting playgroup, and he had been kind of tired. So the combination of friends and extra rest won over. It was a glimpse into what our other life could've been. The life where Ellis didn't go to preschool fulltime when he turned three. I'll pick him up early today. We have speech therapy in the afternoon.

Ellis's ASL has been blossoming. I want to write a whole other post about it. For now, though, when the "bus" got here this morning, we peeked out the window at it and I signed that the bus was here and we better get our coats on fast! He looked at me and for the first time signed van instead of bus. Both van and bus are fingerspelled, so what he really signed was something-something-n, like with bus, it's b-something-s. With something equalling some kind of gibberish imitating the quick movements of fingerspelling.

It's been a busy week.

First, my good buddy who moved away came back for a visit. Yay!

Then, it seems that I must traverse all over the city and its environs this week.
On Wednesday I had a quick visit with the midwife (follow up on some birth control options, if you must know). I bother to even mention this little visit, because I met a new midwife at the birth center and she was so awesome that it made me want to have another baby just so I could see her again. In the afternoon, I went to my friend's house for playgroup. I've felt weird about going without Ellis who is in school. But Marlowe deserves to play with other babies, too. On Wednesday evening I went to CHOP for a presentation about bilateral cochlear implants (two implants--one for each ear). We're not interested in getting a second one, but the CI team had just been through a time of study, and i wanted to hear what they had to say. (So I've gone from Bryn Mawr to NW Philly to home to University City.)

On Thursday I went to a signing class at the school. The teacher was our first deaf mentor and is a really terrific ASL teacher. The material itself I already knew, but it is so helpful to actually practice conversation, because that is where I have trouble. I struggle with my ASL receptive skills. After class I tromped through the rain to the fabric store. Then there was speech therapy in the afternoon. After which my brother met us and we went to Target. (So I've gone from Germantown to University City to Jenkintown to home.)

Then on Friday, I kept Ellis home, so that we could go to Lancaster. We made a stop off to visit my grandma who is feeling very blah. The kids cheered her up a little, but it was kind of a difficult visit. I had a hard time thinking of what to say. We spent the rest of the day at my parents' house. My brother came over for a little bit and took Ellis to his house for a couple of hours. Ellis was over the moon with joy about driving away with Uncle Nick.

Today we had deep clean day. I wanted to have a huge deep clean, declutter day before the holidays. It's still not where I want it, but significant progress was made. I even got the kids clothing situation squared away, which is big when you have a baby who grows out of his clothes every few months. I really wanted to get ahold of the toy situation before Christmas and to reorganize stuff now that Marlowe is mobile.

Oh yea, did I mention Marlowe will be crawling any day now. He scooches very deftly and quickly wherever he wants to go, and then gets up on his hands and knees and rocks, with a determined look on his face that says "I WILL crawl!" Very comical on his tiny 5 mo face. Thankfully, he's still easy to pick up and redirect, because he can pretty much get into anything in his reach that he wants.

Speaking of Marlowe, the magical baby who can get by with very short increments of sleep is saying "mommy! mommy!" in that special baby kind of way, "waaah!". Sorry this is kind of a boring post. My blog mojo is kind of off these days.

...for every Phillies Tshirt I saw today...

Yay Phillies! I must admit, though, it didn't even occur to me to watch the game last night. I think I may have heard that it was going to be played on Wednesday, but it didn't really compute. I was too busy watching Gilmore Girls. I'm up to midway through Season 5. But it is fun to be living in the winning city and seeing everybody be so excited. So. Yay Phillies!!

We went down to CHOP. In addition to our regularly scheduled speech therapy, E had a CI mapping. The audiologist wants to see him a little bit more frequently, because, well, Ellis just doesn't do that great with him. The audiologist has yet to get a really good idea of what's going on in Ellis's head. Thank goodness the speech therapist works in the same office. We're all pretty confident that he's hearing fine, but E just doesn't really do hearing booth, shall we say. But then he had a very, very good speech therapy session. In fact, he knew he was doing well, because he kept beaming and we kept cheering. So he marches to his own beat. Full of surprises that kiddo.

And tomorrow is Costume and Candy Day (otherwise known as Halloween, but we're really just in it for the extra dressups and sugar rush). So a costume must be had. And it's the Rule that we make our costume. And since E doesn't really know what's up yet, we still get to choose his costume. Chris had the great idea of Airplane. arms as wings, a propeller attached to a Tshirt. Hat. Glasses. Voila. The key is Simple this year. Ellis painted the wings this afternoon, and I've been doing the rest this evening. I can't wait for him to try it on. They have a little parade at school, so I wanted it super simple, since the poor teachers are going to get all their kids into their costumes. I don't want to give it all away. So I'll probably download the gagillion number of pics on my camera tomorrow and post some already.

Hubby blogs----

Wow. What a week. Actually, it's been a week and a half. About the middle of last week, I was looking at a deadline. I knew I had to finish this particular project by the end of the week or so, though I did think I would have the weekend. But for the life of me, I could not get to that project. Whenever I tried, I would be interrupted by some new disaster at my other job. In fact, they owned me for about three days. So by the end of the week I turned to finish the other project.

I knew it would be a programming marathon, but I was determined to make it happen. After almost forty-eight hours without sleep, I had what I had. But I still was not where I needed to be, and my employer was -not- happy with my progress. I swear, thought I would lose my job.

So I worked through Sat. and Sun (I NEVER work on Sundays). And on Monday I was feeling comfortable that I could be done in reasonable time.

Then my other job called up. Disaster. Our client was -very- unhappy. Things had gone completely wrong over the weekend. And though it -really- wasn't our fault, we naturally had to share the blame. So it fell to me on Monday to be the one to offer a solution that would save not only the project but our relationship with the client.

In a moment of complete psychotic disassociation from reality I suggested it might be possible to put together a complete social networking environment in Drupal, within 24 hrs. We already had a template, which could easily be tweaked for the purpose. And once again, another forty-eight hour work marathon later, I was in the same situation as before: desperately trying to put something together in a pinch, hoping it would be good enough to buy more time to keep desperately trying to put something together in a pinch that would buy still more time. Only now I was doing it on two fronts, for two clients.

I don't have to tell you that as I sit here I feel like I've lived five years in two weeks. I'm just now remembering that I have a family, and I'm trying not to think about everything I have left to do. I'm trying to think of what to say to my wife to start getting to know her again. And I'm not sure that Ellis remembers who I am.

I did find out from talking to her today that Ellis had a rough speech therapy session, though not in the usual mode of rough. We've been struggling to keep him engaged during the sessions. The therapist thinks he should be making more progress than he is. So she asked a colleague to run this week's session, while she watched.

Second opinions can be just the thing for getting over a hump. Unfortunately, it seems that one of the reasons we are not seeing the progress we should may be that E has processing difficulties. He's struggling in ways he shouldn't, even given the challenges of being deaf. And maybe he is showing evidence of this processing problem in ASL, too. Only we would never have known it, because we could never get anyone to give us a proper ASL evaluation as part of our IEP.

So yea, we've pretty much had a normal week. What's new with you?

Yesterday Ellis went to the dentist for the first time. Can I tell you how much I have been dreading this? Putting it off until the very last minute? It takes two of us to pin him down for a haircut; I could only imagine the horror of the first dentist visit. But, to my utter surprise, Ellis was PERFECT!!! No fussing, no big weepy eyes, no squirming. He just hopped right up there and did exactly what he was supposed to do!

Today marks his First Day of Preschool. He is an official preschooler. There's more to write on that. He's in a new classroom with new teachers, though many of the same students. He hopped on the bus (really, a van) with no problem this morning. I wasn't sure what to expect. And off he goes!