Thank you!

I'm feeling pretty thankful at the end of this four-day weekend; for my parents, my husband, my extended family, my friends, my home and my health; but most of all for Paige and Skylar, who teach me something profound each and every day. Paige, for reminding me how joyous it is just to be in the world learning new things, and Skylar, for impressing me more each day with her maturity and attitude - living life with gusto. Man, I love these girls.


Skylar's hearing test last Friday (the 19th) went very well. After speaking with various doctors including a radiologist, we decided to postpone the CT scan and just do the fancy hearing test, (ABR), which still required sedation, so it was an early morning affair that took all day from which to recuperate (us, not her). She was amazing, as usual. I was pretty much a wreck, but the staff were so caring and helpful, I actually felt fine about the procedure itself. We didn't learn much new information, but her audiogram was confirmed and refined, enabling Doctor Katharine to program her hearing aids more accurately. Her most severe hearing loss is in her right ear at the 4000 hz frequency. She can only hear sounds in that frequency at 90 decibels. With that severe a loss, hearing aids can't amplify the sound enough to enable her to hear it. So high frequency sounds like sh, f, ch, and s will take a lot of work to produce. It's much better in her left ear, so that should allow her to compensate for the right ear. Her speech sounds continue to improve daily. Awesome progress; I'm so proud of her.

Paige sang me this little song the other day. What a sweetheart. She continues to show love and support for her sister in a way that is nothing short of amazing. She also really enjoys her one-on-one time with me, and I have a pretty good time with her, too. :-)

Visit to Danville

Skylar and I traveled down to see my brother's family for the weekend - a special trip for just the two of us. At the Portland airport, in between our two home bound flights, she told me "Just Mommy and Skylar went on an airplane. Just us." And the previous night, getting ready for bed: "I had a good day," followed by a satisfied sigh. After taking most of the car ride to warm up to her cousins, Sky started talking and laughing more than ever as K & A played with her and showed her their things. They really had a great time. And I must say, traveling with one kid is so nice! The multiplier effect takes hold of the four of us sometimes, and it is really good to get some quality one on one time.

The car ride home to K & A's















Playing with Polly Pockets with Katie



















Oak Hill Park Slide with Anika















Walking back home



















Paige is really looking forward to her turn to visit in the spring, but she had some fun over the weekend herself!

Paige-a-met-aige

Paige often says and does hilarious and adorable things, and I haven't documented some of her quotes or crazy outfits here for a while, so here's a taste of recent Paige-isms and photos for your enjoyment.

"I'm gonna be four when I get so big and eat this cookie."

"I just love you so much mommy. I just do. So much."

"I ate so much dinner and I'm gonna be so big. I'm gonna grow and grow and grow and be four. "

"Mommy, I crack you up."



and a recent Skylar-ism, just cuz it's cute: "Mommy, don't talk to me. Talk to me tomorrow."

We had photos taken with Livia recently, on a chilly early fall morning at Tugman Park. Preview a few here: http://www.fremouwphotography.com/blog/ and scroll down to October 17.
We have had photos taken at 6 mos., 1, 2, and 3 with Livia. It's wonderful to have the same look captured each year...I'll be working on trio displays of each girl at 1, 2, and 3 for our living room wall.

Advocacy Update

So, back when I blogged about being Skylar's Advocates, I mentioned we were going to get a home visit from Trish Orr, her DHH teacher. Trish is in her early 50s I would guess, a child of deaf parents and aunts and uncles, whose introduction to me went like this: "In my family, it's a disappointment if a child isn't born deaf." Whoa. Try to process that statement for a minute. It really demonstrates how deaf culture works. When everyone in the family is deaf, the hearing child is the different one. So began an intense conversation with Trish, who Skylar immediately loved; she even gave her a Skylar-special full body hug within a half hour of meeting her. Trish did a lot of listening, and a fair amount of opining, which we soaked up since hey, we are all new to this and could really use experienced people's opinions. In addition to growing up in a deaf family, Trish has worked with deaf and hard of hearing kids in Lane County since 1993.

One of her pieces of advice was to go visit the DHH preschool classroom at Bertha Holt Elementary School on the north side of town, as soon as possible. It's free, runs M-F 9-12, has an unbelievable staff to child ratio and focuses entirely on communication and language development. The teacher, Annie, is awesome, and calls parents DAILY to report on words and concepts being worked on at school so that parents can reinforce them at home. Too good to be true? Or too much separate time focusing on the hearing loss? We didn't know. So we went to check it out, thinking, okay, we could make this work, if it's what Sky needs, we can get her over to the other side of town each morning, and they can transport her (free) via bus to her community preschool each afternoon. If it's the best thing, we could make it work.

We observed the classroom for about 40 minutes. The kids (all three of them) seemed to like the teachers and were comfortable there. It's outfitted with all kinds of toys, tools, equipment, and your standard preschool paraphernalia. But the class is not right for Skylar. The three students (two are deaf, one is hard of hearing) are not talking much, if at all. One of them is signing quite proficiently for a 4 year old. Given that Skylar actually has a ton of oral language, and really likes to talk and sing, our assessment is that she would be bored there.

It was a relief to discover that the DHH classroom is not right for Sky right now, although knowing it is there is very comforting, should her situation change. I continue to be amazed by the services available for kids with hearing loss in our community.

One of the other amazing local resources is the network of parents of DHH children. We've been connected with another Annie, the mother of Boris, a 6 year old with cochlear implants and Zara, a soon-to-be 4 year old who previously went to school with P & S at Olum center on campus. We were invited for brunch with their family this past weekend, and it was really wonderful to hear their stories and advice. Annie is a strong advocate for sign language to augment oral communication, and I can see how much of an asset this would be for Sky particularly when she doesn't have her hearing aids in - in the bath tub, after she gets into bed, and swimming/boating. So we borrowed a stack of Signing Time DVD's from the family and the girls already are completely entranced with them. Should be fun and educational for all of us.

Next Tuesday we are getting the CT scan recommended by our Ear Nose and Throat doctor to get a look at the anatomy of Sky's inner ear. Wish us luck that Miss S. can hold still for the picture so we can avoid having to use anesthesia. If it doesn't work, we will do it while she's under for the fancy hearing test (sedated ABR) we have scheduled for November 19.

Sleepy Child

I tuck her in, kiss her hair, and whisper, "night night. Love you. See you in the morning."

She's quiet, hugging her bear and snuggling her blanket.

About 5 minutes after I leave her room, I hear, "mommy, I need go potty." Once every 30 seconds or so, with increasing forcefulness.

She doesn't need to go potty. We both know this, but it's easier to indulge her little ritual than to dig in my heels. I go in, and wordlessly lift her sleepy body out of her bed and into my arms. I carry her soft, warm 3 year old heft to the door, careful to open and close it quietly so as not to disturb her sister. I'm aware of how far down my leg her foot reaches - she's getting so big. Her head is on my shoulder.

She lets me set her on the potty and sit there with her, waiting. Our foreheads are touching. After a while, when she doesn't pee, I gently lift her up, dress her and carry her back to bed. She snuggles under her blanket in the blue night-light, breathes a satisfied sigh, and drifts off to sleep.

The innocence of sleeping children
Dressed in white and slowly dreaming
Stops all time
-the cure, "primary"

Skylar's Advocates

Jim and I are Skylar's advocates in this new world where she has hearing loss. We read up on the issues, get connected with the local DHH (Deaf and Hard of Hearing) community, organize appointments, clean her equipment, contemplate the merits of special vs. mainstream schools, write up communication tips for her teachers, answer other kids' questions if needed, etc. Basically, we're her parents, and we care about her well-being more than just about anything else on the planet (except for Paige). So of course, we advocate for her, we cheer her on, we pay attention, we do what needs to be done.

But I'm still figuring out how much to advocate/separate/specialize, and how much to let her just integrate hearing loss into her already very normal life. Since she got her hearing aids, her communication skills have improved drastically. We held a video chat with gramma and grandpa E. today and Skylar carried on a pretty good conversation with them; you know, they ask a question and she answers with something intelligible that makes sense. How freaking cool is that? I mean...how normal is that? You can see what I'm getting at.

Some DHH parents have recommended doubling up on speech classes, and adding UO Speech and Language clinic classes as well, to really pour on the learning services during this critical stage of language acquisition. On the other hand, after her first speech appointment, her therapist Mindy told me Sky speaks really well and she had expected, based on her charts, for her speech problems to be much more severe. She also clearly passes all her developmental milestones on the zillions of forms and tests I have filled out in the past two months, with the exception of speech and language milestones, for which she scores slightly sub-par. A lot of kids with hearing loss have other issues that compound the problem, but for my sweet girl, it's just her ears. "Why does she need hearing aids?" is the most common question from other children. "You know how some people need glasses to see well?" I ask them. "Skylar needs hearing aids to hear well." They accept that.

And away they go, playing like the carefree three year olds they are.

Next up: we get a home visit from our new DHH teacher, Trish. And if you want to see some of the stuff I am reading related to hearing loss, check out the John Tracy Clinic and Speak Up! blogs I posted in the My Blog List section at right.

Paige is doing great - funny as ever and rolling with all the recent transitions. She was a little apprehensive about starting her new preschool, so she told me she would hold Skylar's hand to make her feel better. And she did. Look at this drawing of a person she did today! A recognizable, crooked-smiling person! It came out of basically nowhere and made Jim and me smile, widely if not crookedly :-) In the next pic, she munches a bagel, not caring to pause long enough for me to take a decent picture.

First Day of Preschool