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.

The Mind Boggles

Wednesday we got a phone call from our service coordinator at Somerset County Early Intervention letting us know that Micah's application for hearing aids was approved. Since the application went from the county to the state on the 10th, the turnaround time for this is supposedly quite fast (unless you're the parents of the child who needs the hearing aids who are looking at the calendar thinking it's THREE months since we got home from China, what is taking so long?). Yesterday the letter actually arrived from the SCHEIS (Special Child Health and Early Intervention Services - if you know German, you know what letter is missing to make it a very appropriate acronym) informing us that we could call the audiology department at JFK (another of the banes of my existence) to set up an appointment for a hearing aid fitting/distribution. So this morning, with one child occupied on the computer and the other destroying the living room, I got on the phone with JFK.

And the audiology department hasn't gotten its letter from the state yet, so no appointment. Once all of this fall into place and the hearing aids can be ordered, it's about two weeks until they come in, and then the wait for the appointment - so we'll have probably been home with Micah FOUR months by the time he's amplified. But it is boggling my teeny tiny brain that I have a letter telling me to get an appointment and cannot do so.

Then later this afternoon, there was a message in our voice mail for Steve, a woman named Debbie from Mercer County EIP stating that Micah had been enrolled with the state's birth defects registry and she wanted to discuss services available because she had received Micah's packet from the state. Huh? Services we've been receiving through Somerset County, where we live, for the past two months. Our mailing address is Princeton, but we're in this odd little corner of Montgomery Township that is in the southernmost part of Somerset County, so in the real world, the equivalent would be trying to convince people you live in Brigadoon. So whatever documents our Somerset County EIP service coordinator needs to do her part in the adventure of getting hearing aids are now languishing in a Mercer County EIP outbox waiting to be sent on to Jessica or into The Void. And the mind boggle rollercoaster rockets onward.

All of this once more proving that if I was going to be diagnosed with a cerebral aneurysm, it would have already happened because it would have blown wide open after the morning/afternoon I had.

Meanwhile and far away, it was a good day for the kids, other than Micah whacking his sister over the head with a toy wooden rolling pin. Thea survived, but with many tears and a nice goose egg - but the saving grace to pull us out of any post-whacking funk was that we met Steve at Panera's for lunch. Micah's ibuprofen dose kicked in; he's cutting at least four, possibly more, teeth so he's somewhat miserable in his cheerful Micah manner; Thea tried salmon from Steve's lunch. After eating, Thea was game to go to Snip-Its for a bang trim- which was a bonus for me because usually there is cajoling and bribing involved in the haircut process.

While Micah slept this afternoon, we tried on Thea's Halloween costume. She wants to be an international super spy, a la Pablo of The Backyardigans. We put together a child's white (polyester) dinner jacket, dress shirt, black bow tie with a pair of black stretch pants and black patent leather shoes. Add a pair of black glasses - and voila! She was quite pleased with the result. (Pictures to follow.)

Dinner tonight was courtesy of my new NP colleague, Karen. Her husband went tuna fishing and got two tuna so yesterday at work there was a nice chuck of tuna in an airtight, sealed freezer bag. And Thea loved the tuna - eating her entire piece and then some. Even Micah, who is trying out being an ovo-lacto vegetarian on for size, or so it seems, tried a bit.

Now it's 11:30 pm, our neighbors just called awhile ago and dropped off their Emily, one of Thea's absolute favorite friends, on the way to the ER in New Brunswick with their younger child who had a fall at daycare with a nice knot on his head and woke tonight throwing up. Emily scores huge points for her resilience - she just took her blanket and stuffed animal and climbed into Thea's bed. Thea's bed is in a state of shock that someone is actually sleeping in it - we're using it with Thea to read books, but she's still sleeping between us. Which was fine back in the days of a 25 to 30 pound two-year old but is not as wonderful now that she's a 50 pound boulder. Thea will be in for a surprise in the morning if Emily's still here.

So with all that going on, I won't bore you with details of Micah's and my trip up to the Parent-Infant Group at Summit Speech School. (Where, while Micah was engaged in productive activities geared toward enhancing his communication skills, I was sitting in a room of mommies discussing their cats and dogs and other stuff that might have been therapeutic for them, but was an hour or so of my life that I am not going to get back. When the facilitator tried to engage those of us who were reorganizing our mental sock drawers rather than talking about pets by asking, "Lydia, do you have pets at home?" I told her that yes we did, an almost seven year old guinea pig that I wish would die so I could reclaim that corner of the dining room and not have Micah trying to figure out whether he wants to put aspen chips with guinea pig feces in them into his mouth. Sort of a conversation killers, but it was too good to pass up.)

Socially Secure. . . .

Three days before the one month mark, Micah's Social Security card arrived, and it was correct - it didn't have the horrible "Valid for Employment Only with DHS Approval" printed on it (as Thea's first card did). So the score is tied, two trips to SSA for Thea, two for Micah. And now I can move on to his NJ birth certificate and U.S. passport.

We also got the medical clearance slip for the hearing aid, which should be the final piece of that puzzle, which puts us at the beginning of a two to three month wait to see what the state produces in the way of funding for Micah's hearing aid. (A bone-conduction soft-band hearing aid runs about $3,000 to $4,000.)

Tonight Thea and I have a date to assemble her party favors for Saturday's party - I'm hoping her excitement level doesn't burn itself out by the actual time of the party. Our oven is officially dead, so the cupcakes will be catered by ShopRite or Whole Foods - for both her party and for the school field trip to the Von Thun Farm. Micah is going to be doing time in the pre-toddlers room at Lawrence Day School so Thea and I can have a real Mommy-Thea morning.

Stupid is as stupid does. . . .

I got a phone call from our service coordinator at Somerset County's Early Intervention Program. JFK/Johnson Rehabilitation Institute, where Micah had his audiograms, will not release the audiogram reports to her without a signed release.

On the day of his first audiogram, when I checked us in for the appointment, I handed the clerk a sheet of paper with the names, addresses, phone numbers and fax numbers for Micah's primary care provider, Summit Speech School and the county EIP requesting that they be sent copies of any reports in addition to the ENT who ordered the test.

It has been like pulling teeth to get anything out of JFK. They wouldn't send the graph of the first audiogram to Summit Speech School (where Micah had his developmental evaluation) because he was having a second audiogram. They took their sweet time getting the report out and it was only a text report, the charts of the two audiograms were described but not included.

I am SICK of stupid, incompetent people who are delaying my kid from getting the help he needs and is entitled to - and this really makes me wonder what happens to kids whose parents just go with the flow and accept the idiocy.

Fortunately, Micah is a happy little clam who is blissfully unaware of all of this crap, and by the time he gets his hearing aids, I will be done with the screaming and cursing.

Brother Tiger stays home, Micah goes to school

This weekend we had an adventure with Thea's two stuffed white tigers, Regular Tiger and Brother Tiger. These guys have been with her since December 2004 or so, and we took (and returned with) both of them from our trip to China this summer. Thousands of miles, at least a half dozen airport security check points, bus and taxi rides, these guys were in the thick of it. Friday night all of us were going to Maryland to see my mother. My mother graduated from high school 60 years ago and I was escorting her to the reunion luncheon. Past 50 years after graduation, they lump all the alumni together into one large "Golden Techite" group. At this particular lunch classes from 1927 (yes, this is not a typographical error) through 1957 were represented. The group gathers at a luncheon each year, and approximately 600 to 700 people attend.

So we pack the car and head down to La Plata. The only time Thea's car door was open was at the rest stop on Route 301 on the Eastern Shore of Maryland. We arrive after 11:30 pm or so at the hotel - my aunt had the guest room at Mom's booked because she was also coming to the high school reunion luncheon. And the car is unloaded and no Brother Tiger. Anywhere. Regular Tiger made the trip in my suitcase, so I knew we had at least one of them. But one tiger and not two is a disaster of monumental proportions.

Fortunately all parties remained calm. The good thing is that we stopped there around 10 pm or so, so not much time had gone by. And through the auspices of Provigil, I drove back to the rest area to see if there was a tiger in the parking lot, inside (through the kindness of some stranger), on the picnic tables or in the trash cans (if someone decided to be a complete jerk). I got back to the hotel at around 3:30 am empty handed.

Thea passed the weekend in good spirits, not saying too much about Brother Tiger. While I was off at the reunion with Mom, Micah and Thea went to Oma's Special Park with Steve, and thanks to the late night on Friday, both of them took naps. Having had almost three hours retracing our footsteps and deconstructing the evenings events, my guess was that Brother Tiger was sitting at home, having never made it to the car because Thea was too busy minding everyone else's beeswax except her own.

Sunday we went to our cousin Elise's first birthday, and left for home just in time to contend with all the traffic from FedEx Field. Fortunately the back roads weren't too bad and we didn't lose much time. By the time we were about half way back to New Jersey, Thea finally asked, "But was if Brother Tiger isn't at home when we get back?"

But he was, much to everyone's relief. He spent the weekend sitting on the back of the sofa. And I felt like a dolt for driving almost 150 miles to/from the rest area.

Today was Micah's first day in the Parent-Infant Program at Summit Speech School. It's an hour's drive north of Princeton, and after a weekend of going to Maryland to visit Oma he was probably not thrilled at being strapped in his car seat yet again. I was hoping that because it was Columbus Day, the school would be closed. No such luck.

The program has about 30 minutes of playtime, then the children stay in the classroom and the parents (all moms today) went off to a conference room for group. The children rotate through various therapists and volunteers. At 11:40 am we got to go back in to the classroom. Micah did ok, but he did seem relieved to see me. Most of the children have cochlear implants or hearing aids. There is one baby with Down's and hearing impairment. Micah is the only child with atresia/microtia.

Book of the Week: The Unheard by Joshua Swiller. Thank you Janet for the link to his interview on NPR, and thank you half.com for the book for $1 plus media mail shipping.

Rant of the Week: I had to get a prescription for hearing aids for Micah, and got one from his ENT and one from his PCP due to my firm belief in overkill. The county's early intervention program also requires a note from the ENT stating that Micah is "medically cleared" for hearing aids. WHY WOULD HE BE GIVEN A PRESCRIPTION FOR HEARING AIDS IF HE WEREN'T MEDICALLY CLEARED? This is a perfect blend of stupidity and redundancy that has people like me taking medication to control blood pressure.

Previous Rant's Postscript: It is now almost a month since I applied for Micah's Social Security card. Nothing. I see another trip to Trenton in the offing. Ugh. Speaking of stupidity.