daily journaling

We all have them. The ornaments we made in school when we were little kids. I think mine was made of pipe cleaners and beads; it was supposed to be a wreath.

Ellis came home with probably the best school ornament ever. The ILY glove--a little handing signing "i love you." Yes, it is proudly displayed on my tree!

Yesterday was the first day of the new school year for Ellis. Since we've been involved with school since his first year (early intervention), it seems old hat to us now, even though he is only four. But he moves up to a new classroom. He's in the class with the kids with the most auditory access. And yesterday he came home signing so much. I think we all missed school.

I'll admit, it's been a rough couple of weeks. Not always knowing what to do with my super creative, active boys. I feel the language gap so strongly sometimes. My ASL can barely keep up with my parenting needs. School gives all a little more structure to our day, outlet for creativity, satisfies Ellis's social needs that I can't satisfy, and a few hours of peace at home. I actually *gasp* got the living room clean with no other major household disasters yesterday. It was awesome.

And so my brilliant, confidant, sweet boy ventures forth on another year!

Ellis's birthday was yesterday, but basically he's been celebrating his birthday for the past three weeks. I explained to him that first, it was Marlowe's birthday, then his, then Daddy's (whose bday is in a couple of weeks). As soon as M's birthday was over three weeks ago (they are exactly three weeks apart), it has been E's birthday. This past weekend was the real party, though.

Saturday was birhtday party day. This is the first year that Ellis has truly grasped the anticipation of his birthday. After he went to bed on Friday night, I decorated the kitchen and set the table for his birthday breakfast. Marlowe woke me with plenty of time to prepare his chocolate chip pancakes before he woke up. So everything was perfect when he came out of his bedroom. Candles. Pancakes. Smoothies. It was like Christmas.

I found an album of his baby pictures and set that out for him. He loved looking at it. Pointing out all the pictures of baby Ellis. Finding the album was sort of an afterthought, but I thought it might be a fun tradition: birthday breakfast and looking at the baby pictures.

After breakfast we went over to the arboretum to say hello to the trains.

Then we went to Grammy's house for the big birthday. Grammy and Poppy gave Ellis his presents in the afternoon so that he could enjoy them for a little while. A watch and a bike. He looks so grown up!

We planned a fun party outdoors, but about 10 mins before the guests were due to arrive the low rumbling of thunder told us that it was time to move indoors. My optimism ran out. Thus began the most chaotic hour of my life. Kids. Screaming. Running. Inside. I suppose if I had had a clearer head, I could've done more constructive activities. But to be honest, I had been concentrating on optimism that it wouldn't rain. But then we ate and let them watch Tom and Jerry. Which turned out to be a good move, because then the adults could enjoy each other's company more. And the kids had a great time despite it all.

We had a few church friends over, kids Ellis has grown up with. But this year we invited a couple of school friends that he gets along well with. Both of these boys come from Deaf families, so we had a lot of fun hosting our first mixed Deaf/hearing party. As Ellis has gotten older, sometimes big parties overwhelm and he retreats to the basement. But with his Deaf friends, he was so much more vibrant. It's been amazing to watch him develop socially like this. How, at four years old, sharing a common bond of language is already so important.

On Monday, his actual birthday, I sent brownies to school. He came home wearing a Happy Birthday sticker on his shirt. And we took him out to eat for dinner. I am ready for birthday to be over. I think it'll take a little while for him to ease out of it. We may just end up with a summer of birthday.

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.

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.

The last few weeks have been so busy.

* The last three weeks, Chris and I took an intensive ASL class that met three nights a week. Babysitting feat performed by my motherinlaw and a few great friends. It was a great class with just the right amount of what we needed to know at just the right level. Trying to write more on that in another post....

* Last Monday we spent the entire day with a researcher and two dissertators from Gallaudet University (the liberal arts univ for the Deaf in Wash., DC). The focus of their topic was newborn hearing screens. They interviewed us about our experience with discovering Ellis's deafness so early and how we've been proceeding since, interested in some of the choices we've made and motivations for decision making. They also videotaped Ellis doing various communicative play things. The people were very nice. We met at the Pennsylvania School for the Deaf (PSD), where we go often anyway, so that was fine. It was a good day of self-reflection.

* On Wednesdays we've been going to PSD for parent-kid play/support/information time. The kids play and have a great time, and they have someone spend some time with parents with lots of helpful issues and topics to discuss...like how to manage reading a book to a deaf kid. It's more complicated then you think. Visions of snuggling together and having the shared experience of reading a book are out the window. (But maybe because I also have the Wiggliest One-Year Old in the World.) I have to figure how to hold the book, sign, indicate to Ellis what I'm signing, get his attention to move from my hands to the book and back, somehow connect what my hands are doing to the printed word. Phew! I'm sure as he gets older, it will get easier. We do little bits right now. Mostly just labelling. Forget the story...that is a cow. What? you want to flip three pages? ok. Look there's a chicken. *sign "cow" sign "chicken"*

* Last Friday we went to IKEA. Again! Hey, we just moved. We needed a couple more hooks, a lamp, and picked up Ellis's birthday gift from C's g'ma, a little table and chairs with paper roll attached. Ellis is beginning his early forays into the world of Crayon.

* Chris started his new job at UPS last week. It's a parttime job from 4-9 AM! Aack. After he's been there the requisite amount of months, though, the benefits are amazing. Really great insurance. He's holding on to this job and trying to find a full time day job. So this past week we've had to restructure a few things. Definitely earlier bed times! (Well, E stays pretty much the same there) But I think we could both use earlier bed times. And now I lose his help at night. Bah. Especially since Ellis has been having really awful nights lately. He slept through the night a week ago Sunday night and again last Saturday night. It would've been great if we already weren't so sleep-deprived. I can't decide if he has a cold or if he's teething. Either way it's keeping us up, and it takes about 2 hours to get him settled back to sleep after that 2 or 3 or 4 am wakeup. Not. Been. Fun!

* Saturday Ellis and I zoomed off to Lancaster. We first went to visit my grandma, newly interned at a very nice retirement/assisted living facility in the southern part of the county in Quarryville. This necessitated finding a new route for my Lancaster trek. Google maps gave me TWO PAGES of directions for a 60 mile trip. Freaked me out a bit, but it ended up being straightforward, and after I got off the Route 30 expressway, it was a beautiful drive through the country, winding along streams, through the sentinel rows of tall corn fields tassels waving proudly, past bright green fields of tabacco. Gorgeous! Will enjoy future visits to Grandma.

After visiting the Aged Grandparent, I drove into Lancaster city (with it's delicious gas prices of 30-40 cents cheaper than Philly prices) to see my brother in his new house that he just bought. It's a great place. Totally the Bachelor Pad.

I took Nick and Mom to Costco, now that I'm on my MIL's family plan. Nick was after a dehumidifier. I got cute pinkness from Carter's for my new baby niece and snacks for my college-bound sister.

It's been so hot! We washed the day's sticky sweatiness off in our cousin's pool with a pre-dinner dip. I dragged Ellis around the pool on a kickboard. He wiggled his legs and grinned proudly.

There's always a cool breeze in my parent's backyard. My dad exchanged the weed whacker for tongs and grilled us up yummy steaks.

* Sunday we spontaneously invited seven people over for lunch. Amazed I had enough food, since I haven't been grocery shopping in two weeks. I love summer. Zucchini, eggplant, chicken, and tomatoes over pasta. It proved to be a very yummy dinner indeed. Our first full-fledged company in our apartment!

* Today.... I found a new produce stand--we passed it on our way to the DMV last week. We got frames at Target to hang a couple of pictures. Ellis screamed at his green balloon from Trader Joe's. I got a voter's registration card that says Democrat. It's hot, but could be worse, and we have window AC units that work.

Don't you think Ellis looks like a Calhoun in that last pic?

Thursday and Friday I packed up Ellis in the backpack carrier, packed up my bookbag, parked my car, and boarded the train. We were going to Children's Hospital of Philadelphia (CHOP) for more hearing tests. He hasn't had any tests since late August when he was two and a half months old, and those tests were at Temple Univ Children's Hospital. The next appointment I could get for Ellis is in February, and feeling the need to get a clearer diagnosis and to get him into hearing aids, as we have now entered the phase of critical language development time, we decided to turn elsewhere. CHOP is run by a private university, and it shows. I had a much better experience with them than at Temple, run by the state-funded university. Sad, but true. I called CHOP for an appointment and got one a week later.

So Thursday we went for a Behavioural Hearing Test. Ellis sat on my lap in a booth. They played sounds and tried to condition him to associate sounds with a chicken that lit up and moved when they pressed a button. They first started by playing sounds over the big speakers in the booth, but then moved to putting a little microphone sort of thing behind his ear and later, little headphones that inserted into his ear. The audiologist on the other side of the glass played sounds and the audiologist in with us reported: "eye shift", "slight eye shift", "no response", "eye shift". It was amazing to me that she could tell which eye shifts were response to sound. The result of this test is that Ellis has some residual hearing in his left ear. He could hear sounds at about 90 decibels--about the sound of a jackhammer. So even though there didn't seem to be response in his right ear, we are so thankful that there's something!

The next step was to get an ABR (auditory brainstem response) test. Normally you have to schedule this weeks in advance, because it is kind of an involved test. When we went to schedule one, they had an opening the next day! Yay. ABR's need to be done when the person is at rest. Ellis had one done this summer, and I just nursed him to sleep and that was fine. Now he is too old for that and needed to be sedated. It turned out that this was the most difficult part of the whole test, because he could not eat for 6 hours before the sedation.

Our appointment was at 11 am, and they said that the last time he could eat was 4am. Even though he wakes up a lot at night to nurse, I set the alarm to make sure he could get a good feeding at the latest possible moment. Ellis and I boarded the 8.59 R1 and got off at University City. We arrived at CHOP around 10, and knowing that he hadn't eaten, they processed fairly quickly, but it was still involved. We had to be cleared by an ENT (ear nose throat doctor), which was no problem. And then we went over to the sedation unit. Everyone was really nice and helped me carry my things and cooed at the baby. Unfortunately Daddy couldn't be with us, because of the last minute appointment, and his being a teacher means that he just can't take off, you know? So I was really grateful that everyone was so nice and helpful.

By this time it was nearly noon. Ellis hadn't eaten since 4 am, and he hadn't slept since he woke up around 6.30 except for a fifteen min snooze on the train. I can't imagine how miserable he must've felt. And I was so stinkin' proud of my kid, because he barely fussed!!! He could take his mind off how he was feeling by playing with the couple of toys I brought along or playing with my face. By the very end, I could tell it was getting harder and harder. All I could do was just hold him and coax him to suck his pacifier. Then they gave him the sedation liquid orally (thankfully didn't have to use an IV), and he drifted off into blessed sleep.

During an ABR they attached electrode thingys around the head, play varying levels of frequencies, and monitor the brain's response. In short, they are testing how well the ear talks to the brain.

There are different kinds of hearing loss. A conductive loss is hearing loss caused by something (like fluid) that stops sounds from getting through the outer or middle ear. A sensorineural loss is hearing loss that occurs when there is a problem in the way the inner ear or hearing nerve works.

There are also different levels of hearing loss. I asked the audiologist how they quantified hearing loss. She said it's more like catgorizing the loss on a spectrum than actual percentages. The spectrum goes from mild to moderate to severe to profound.

The ABR took almost an hour, and afterwards while Ellis slept off his sedation, she went over her observations with me. Finally, we have answers, something tangible. She was able to diagnose his hearing loss as severe to profound, finding some response in the left ear at around 85 to 90 decibels, adding the caveat that the ABR can only go up to 90 decibels, perhaps the right ear could pick up sounds much louder than they were able to test, but for all intents and purpose in the moment, the right ear gave no response. She was also able to confirm that his loss was sensorineural, which is permanent.

The audiologist was eager to get him into hearing aids as soon as possible, so while he was still asleep, she took ear molds, squirting this soft substance that quickly hardened into his ear. In a couple of weeks, we can go back and get him set up with loaner aids, while we figure out insurance in order to buy some. The state has medical assistance that will cover what our insurance doesn't cover for the aids; so even though it's complicated, I think it'll work out fine.

Because his loss is so great, he may also be a candidate for cochlear implants, providing that other conditions are met (e.g. that the auditory nerve is there or that the cochlea is shaped right). So we'll set up informational meetings to proceed in that direction, too.

A children's hospital is not a happy place. Walking through the halls, I passed parents with worry lines etched into their faces, children in strollers clutching blankets breathing through a tube. Stars in the floor tiles and rainbows painted on the wall try to comfort the passers-by, but it is a place full of kids with really big boo-boos. Though I was sad for the kids who face such huge physical challenges and pain, I walked out of there feeling so thankful that the only thing wrong with Ellis is his hearing, and we can work with it! He is happy and healthy, bright, responsive, and expressive. We just can't believe how much we love him!

Ellis recently discovered the joy of watching the tube. I can plop him in the exersaucer, turn it on, and have 20 glorious minutes. At least it's educational! The only thing I have to put on for him are these brilliant DVDs teaching kids sign language: Signing Time. They're lowkey, have cute fun little songs, and lots of visual reinforcement of the words. Each volume focuses on a different set of vocabulary. Each time a word is introduced the two main kids sign it, an adult signs it, there's pictures of it (like "apple"), lots of other kids sign it, and they display the written word, too. I love it! We've borrowed vols 2 and 3 from the Early Intervention lady, but I've already ordered vols 1 and 2 for Ellis from Amazon.

It's very easy to learn the signs, because there's so much repetition, so we're picking up the words, too. It makes me feel good that I string a whole bunch of words together to form a concept. I will say that the only thing that really bugs me about ASL is the lack of nuance in verbs. Subjunctive? Gerunds? Future perfect? The only thing left for me to do there is to spell out the word. Hmmm. Right now we're sort of viewing sign language as a starting point, anyway, so we'll see.

At almost 7 months, Ellis is a bit young to sign back yet, but he definitely is clued into the fact that we're doing something important with our hands. He watches keenly, shifting his gaze from hand to hand to our face. I can't wait 'til he starts to try, too.