The Eyes Have It. . . .

Today was ophthalmologist appointment day for the kids. This was on the To-Do list from Micah's ENT, but was a lower priority than the audiograms, the renal ultrasound, EIP evaluation, etc. Thea's got included in the field trip because Steve thought she was having a problem with distance vision because she couldn't (wouldn't?) read a speed limit sign while out on a walk on Thanksgiving. So on Monday, while driving home from Summit Speech School, I called South Jersey Eye Physicians - and got appointments for today. Sort of amazing. . .

And. . . .both of them check out just fine. Thea did well on all parts of the exam, except the second eye drop - the first one didn't thrill her, and she was not pleased about having the process repeated. But Dr. Wexler seems to have a particular talent for prying open small eyelids and getting the job done - and then the whole process was repeated on Micah, except he had to have two drops because of his age. Not quite the meltdown of the ER visit, but he was not pleased at being placed in his second headlock of the week. Then we got to go out to the waiting room to leave another trail of mayhem and destruction while the eye drops worked their magic.

Anyway, Micah's exam was normal and Thea has 20/20 vision and does not need glasses - and she did the "big girl" test with the letters and not the shapes, so she's quite proud of herself.

One more thing crossed off the list, leaving just bloodwork left for Micah. (The ENT also recommended genetic counseling, but I don't really see the point if all his other exams are normal and he's developmentally on track. It wouldn't change what we're doing or plan to do, so why bother just for the privilege of paying another co-pay and seeing another specialist.)

Next week on December 5th we have yet another audiogram at JFK, the second one with the BAHA, then I probably should make another appointment with the ENT to check in with him.

Monday night I went back to Summit School for the reading and book signing. Josh Swiller is even better in person than on the NPR interview. I got my copy of his book signed for Micah. I highly, highly recommend his book The Unheard.

More later.

Baby's 1st ER Visit

We've always told Thea no ER visits until after you're five years old. Somehow I missed out on conveying that important piece of information to Micah - and tonight we went to the ER for the first time and he got a few stitches in his forehead. It all started with his standing on the sofa and trying to jump or walk, and going off the edge and right into the edge of the coffee table - not the first time this has happened, but this time he conked his head just right and there was a little gash on his forehead. It looked tiny enough, but since it kept oozing, I wanted to have it checked out, especially since it was on an area on the forehead where his BAHA band sits.

Fortunately tonight was a quiet night at the University Medical Center ER (I've always hated that name, it's like the hospital is trying to capitalize on a non-existent relationship with Princeton University). No sooner than giving Micah's information to the receptionist and getting an ID bracelet slapped on his ankle were we taken into the triage area, and no sooner did the triage nurse tell us to go out and wait did the trauma tech come along and take us back.

The tech took off Micah's bandaid, told me that it was going to need stitches and went away. Phooey, I was hoping that someone would glue Humpty Dumpty back together and we could get out of there quickly, but it was not to be. And a big fat non-thank you to that trauma tech for not giving me a tissue or a gauze to catch the blood that started to seep out and run down Micah's forehhead yet again after yanking at the bandaid. Fortunately I felt ballsy enough to rummage for what I needed (I really like the vest I had on and didn't feel like getting blood on it).

The rest of the staff we dealt with (Dr. Lee, Nurse Jacqueline, Cecil) was very nice. The doctor and nurse got him numbed up, and then Cecil came in to wrap Micah in a sheet and then put him on the papoose board. Micah had a little snooze after the local anesthetic went in, so he came back full throttle with the wailing and wiggling for Act II. I held his head for the first set of stitches, then the nurse took over for round two - it's hard work to hold a little body still for more than a few minutes and Micah's determination to fight and let us know how pissed off he was did not flag for one single second until he was released from the Velcro.

All in all, with his bonking his head at 7:05, getting to the ER at 8:00, we were home by 9:15 pm which has to be some sort of record. Micah should sleep like a rock after this - but he's fooled us many other times.

Hearing Test w/the BAHA, etc.

Today was going to be a good day; I actually wasn't dreading having to spend 90 minutes in group while Micah was doing his thing at Summit School. Then we spent time in traffic, driving in what Steve said would be 'flurries' and what I would term big, fat, fluffy flakes that were coming down at an amazing rate. The landscape went from just wet in Princeton to something out of a Currier & Ives print up in New Providence. First snow of the season so it completely stymied most of the drivers on I-287 and I-78, making the trek up to Union County that much more pleasant. I chugged most of my coffee en route, which was a bit of a mistake and miscalculation on my part: when the roads are iffy and one is not familier with the choke points, don't opt for the extra large cup at Dunkin Donuts.

Micah is teething, still - more teeth than I care to think about. If I were him, I'd be chugging a Percocet smoothie or two, but he's having to get by on infant Motrin or Tylenol. There are at least five or six bottom teeth emerging, and yesterday when I got a finger in to rub his gums while trying to get a visual, I swear there is an upper molar or two also coming in. He's a little whinier, a little clingier, but still being a trooper through it all.

His trooperishness flagged when I handed him over to the therapist before trotting out to the mommies group. He was ticked, and one starts crying, the whole group usually chimes in. Which makes me feel like crap just walking out of the room.

Then while cleaning my mental sock drawer in group, I realized that instead of accomplishing all the wonderful things I put on the list for today, I would be driving from New Providence to Edison because Micah had another round of audiological testing at JFK Medical Center. And my folder of all information pertinent to Micah, Summit School, JFK, etc. - including directions - was at home.

There were only two other children there this morning, Cormac (bilateral cochlear implants) and Connor (hearing aids) - and the discussion this morning was centered on plans for Thanksgiving and that most families all have their quirky, dysfunctional aspects. Personally, I'd have rather been painting the fingerprint turkey and coloring the acorn (a study in brown Crayola) with Micah. They also brought snow in to the classroom in buckets so the children got to scoop it and mush it.

Micah slept on the way to Edison, which I got to via I-78 and the Garden State, rather than the windy back roads way that http://www.randmcnally.com/ spewed out. He did pretty well on his testing - with a little adjustment of the volume on his BAHA, which was sent between 1 and 2 to closer to the 2, his hearing came in at the 30 dB range. And we have to go back in two weeks for a retest to duplicate the results to make sure they are accurate. Then if all goes well, the next follow-up at JFK will be in three to four months.

Next week, I'm bagging Parent-Infant Group because there is going to be book reading that evening at Summit School by two hearing impaired authors : Josh Swiller, whose book The Unheard I just read about three weeks ago, and Michael Chorost who wrote Rebuilt about his experience getting cochlear implants as an adult. I heard Josh Swiller's interview on NPR, thanks to Janet, bought the book and read it in about two days (a minor miracle given that most of my reading is accomplished while blow-drying my hair or in the middle of the night if I wake up and can't get back to sleep). The Unheard is one of the best books I've read this year so I want Micah to have this as a part of his future library, once he's done with Dr. Seuss and Curious George.

Yesterday Thea and I went out to lunch, Tiger Noodles, again and then did our grocery shopping and shopping shopping. The project for the past few days has been get ready to do holiday cards. I bought photo cards at the bargain price of eight for $1 at Target, labels and stationery, so now we just needed a picture to put in the cards. Thea was lured into putting on a dress, tights and patent leather shoes; Micah got thrown into a little button down shirt, vest and corduroy pants. I'm glad we didn't take them to The Picture People or whatever, getting one shot of both of them looking decent (smiling would be bonus), Thea not yanking her dress up showing off her pink underwear with the hearts and glow in the dark skulls, and Micah not stuffing two fingers into his mouth while putting a headlock on his rhinoceros would have taken intervention from a higher power.

Then Thea decided that she wanted to put the address labels that we had purchased that afternoon on the envelopes (all 144 of them) so that meant going to the manufacturer's web page and finding the template and printing them. Something I had planned to do in the peace and solitude that comes after both are asleep, but was not to be. She did not tire of this task, but thought she was the most fabulous az-IST-ent (her pronounciation) in the world, standing at my elbow, handing me labels, wearing only the aforementioned pink underwear with red hearts and glow in the dark skulls for that warm, fuzzy love, death and fluorescence look (purchased from Gymboree, not some baby biker shop.)

All I wanted to do was get the cards ready for the eight or nine relatives who live overseas so I could finally, for the first year ever, get them on their way well in advance of Christmas. So Thea's determination to do the whole lot turned a fifteen minute task into a two hour long project. Then she wanted to sign all the cards - which was negotiated down to the nine overseas cards, which she diligently attacked with her blue magic marker, printing a giant T H E A on most of them.

Micah's iPod

On Wednesday Micah and I dropped Thea off at school and made a quick stop to pick up drycleaning and get a cup of coffee (for me,he has plenty of energy w/o caffeine) before heading home for oursession with Ela, his teacher from Summit Speech School. We were in line at Dunkin Donuts with two people behind us, a lady behind me and a man behind her. The guy starts talking to the lady, commenting on it's a shame that children are using iPods that young.

It absolutely floored me that he was within four or five feet of me and felt it was appropriate to make comments, not to me, but to some random person in line - and all within my hearing, and before I got my coffee which would greatly enhance my ability to answer civilly. Instead of verbally eviscerating this twit, I screwed on my best smile and turned to him and said that the band on Micah's head was NOT an iPod, it was a hearing aid and if he looked just a little closer he could see that Micah's ears are not quite normal and thereis no ear canal. Then I turned back and placed my coffee order. I could have almost steamed my own latte.

What annoyed me is that if he would have spoken to me directly instead of just running off at the mouth, I would have been more than happy to explain. Why couldn't he just wait and talk behind my back and beyond the range of my hearing like a civilized person? Who in the world would think a parent would put an iPod-like device on a 20-month old anyway? What did he think Micah was listening to? Baby Mozart? Pink? Yanni? No apology offered by the motor mouth, BTW.

Still no photos of Micah with his BAHA, the one I took last weekend was a little blurred. Eventually. . .


Lydia

The trip to BAHA. . . .

We have arrived, at long last, in the land of BAHA, Micah's soft-band, bone-oscillating hearing aid. Two weeks short of four months home.

Last night, Micah had a horrible night: up several times at midnight, 3:00 am, and 5:45 am. I was up late getting stuff organized, a once every few weeks task, so I answered the 3:00 am wail, changed him and after not getting him on his way back to sleep, I just threw him in bed between me and Thea, figuring he'd either fall asleep or get smothered by one of us, and at that point, either was a viable option in my book. Only to be woken at 5:45 by the sensation of a twenty-plus pound someone crawling around on my side of the bed. Steve drew that one, and finally resorted to putting him in his crib and letting him voice his annoyance for a half hour. Our day was not off to a good start.

After taking Thea to school, Micah and I went to the post office and then raced home to be back in time for Ela, Micah's teacher from Summit School who comes to the house 10:00 am to 12 noon every Wednesday. He always seems to enjoy her activities, but started flaking out around 11:15 or so. Right after Ela left he had a bottle and took a two-hour nap.

JFK's Audiology Department confirmed our appointment yesterday, so I took that as a positive sign that the BAHA that the audiologist had ordered for Micah had arrived from Cochlear (which is located in Colorado). Micah had a good time in the waiting area, playing with his firetruck and rearranging furniture; he made friends with a gentleman who had a family member who adopted from China, so that helped kill some time explaining microtia/atresia to him and that Micah was a boy. (He was a nice man, but he also had the overly simplistic view of adoption from China: "they don't want girls there, right?" Fortunately Dr. Toth came out to get us before having to get too deep into that whole discussion.)

For the technically un-savvy (me), the BAHA seems surprisingly easy to use. There is an elastic band with Velcro, and on the band is a plastic square that the digital sound amplifier snaps onto. This has to be seated on any of Micah's skull bones; we tried out the mastoid bone (behind the ear) and his temple. When it was first put on and turned on, my boy was not happy and wailed for a few minutes - and it was definitely not the actual headband that was bothering him, it was the sounds he was hearing. After several minutes of displeasure, he settled down and didn't bother with the headband or the processor. Which is good, because it costs $3,000, so imagine what it's like strapping a tiny piece of equipment, about the size of your thumb from the knuckle to the tip, onto a toddler's head and saying, "Go forth, play."

It does have a tiny lanyard that goes through the unit with a clip that can be attached to the neck of Micah's shirt. Even though I'm not really worried about it in the house or in the car, we're using it for now because it may give us the three or four seconds needed to save it from going in the toilet or bathtub. On children older than age four or so, this device is snapped onto a pin that is implanted in the bone behind the ear area. Surgery to implant the pins isn't done on younger children because the bone isn't strong enough, hence the softband holding it onto the child's head.

I'll post pictures later, he looks a little like a hippie or a pirate. After getting home tonight, the most I could manage was getting cleaned up after dinner and getting Thea off to bed. I am happy that the biggest item on our Micah to-do list is checked off. We have to go back to JFK on the 19th for testing in the sound booth - for now we're rotating locations on his head to see where he seems to get the best reception. Testing in the sound booth will check on this.

My only (minor) worries now are that people will think that he's a girl because of the headband or that they will talk to him in that "I must speak slowly because he's mentally impaired" voice. This child is sharp as a tack. I need to get a couple of t-shirts made up for him: I AM NOT A GIRL, and if you don't believe me, feel free to change my diaper, and I HAVE A HEARING IMPAIRMENT, my IQ is probably higher than yours.

Halloween, etc.

This is Thea, International Super Spy with her friend Emily, Super Girl as they were about to start trick-or-treating. This year Thea stayed out much longer and even had to come home to empty her small treat bag. Micah went out in the stroller, but seemed enjoy being part of the fun. He wore his cousin Willi's pumpkin sweatshirt and pumpkin socks. We got a lot of kids - and got rid of about eight or nine bags of candy in the process. By nine o'clock, things had wound down and we closed up shop and pulled in all the decorations and candles. Thea pretty much ignored her candy; she's not quite at that age where every piece must be sorted - I could offer her a Kinder Schokolade bar for the whole bowl and she'd probably trade.


Micah, without even leaving the house, scored big on Halloween by receiving a nap quilt from Eleanor, who gave a similar one to Thea three years ago and who made the quilt for Thea's bed (and the pillow cases, and a doll's quilt and pillow from the same fabric, and a nap quilt, too.) It is perfect because Micah's teacher has been working on using animals to make sounds and his Baby Signs class taught the signs for horse, cow, pig, etc. So I can probably start passing on some of the pink or pastel baby blankets we've recycled from Thea so Micah won't be scarred for life. . . .

We're still in the seemingly endless wait for Micah's hearing aid. I did get a call from the audiologist at JFK - after we had gotten a message that it was now ok to set up an appointment. She said that she didn't know if the hearing aid would arrive in time - and she wanted to check on what type of band: pastel blue or navy with sailboats. WHO GIVES A FIG ABOUT WHAT COLOR BAND? If Micah had a vote, he'd probably pick something in the fuschia with rhinestones category, but since he doesn't I went with the navy.

Then I spoke with the audiologist at Summit Speech School, who seems to have much more experience with bone-conduction hearing aids than the audiologist at JFK. It seems that all soft bands have just one hearing aid, not two, but if Micah were eventually to have a bone-anchored hearing aid then it could be bilateral. Bone-anchoring is not on our agenda until the issue of whether or not surgery is possible to construct ear canal and ear drums is settled. And she said that Cochlear, the company in Colorado who makes this type of hearing aid could definitely get the hearing aid to JFK in time for our appointment on November 7th. And the next time we're up in Summit for Parent-Infant Group, she could take a look at it to check it out.

On Halloween, Micah and I went to Larchmont Imaging for his renal ultrasound. Because the ears and kidneys evolve at about the same time in utero, the ENT recommended getting this done. From watching the screen, I know that Micah has two kidneys, and they seem to have the basic anatomy that is supposed to be there. The technician also checked his bladder as well, which was full - so we had to hang around until he emptied it so it could be rechecked in its post-void state. Fortunately the bladder cooperated pretty quickly. One more thing checked off the list, now onto getting his bloodwork done and getting him to the ophthalmologist (another of the ENT's recommendations.)

Today Micah is 20 months old, four more months until the big 2.0.