Holiday Card 2011

Pictures Galore Christmas

Shutterfly Christmas cards.

View the entire collection of cards.

Song and Dance

Holiday Concert 2011 - two very happy little performers!!!

Santa: Bring pink sparkly shoes and a rainbow teddy bear.

MyAlbumPics.com - Check out my Photo

Bounce into Action

Skylar and Paige bounce and flip while the circus arts class dangles in the background.

Wildlife Safari & Nora's Birthday

Wildlife Safari is a drive-through animal park where you get really close to the animals.  This ostrich played the role of street guard.  He seriously stood right in front of our car for 10 minutes, and made it clear we were not welcome. Then he went and did it to the next car.  Nutso!

Grandma Mary sharing a moment of quiet time with P & S in front of the fish pond. On our way home in the car we learned that Cousin Cooper had been born that morning, 11-11-11!  Happy Birthday Cooper!  The girls can't wait to meet you.

 Nora turned 5 in mid-November, and her family threw her a great birthday party at Dorris Ranch.  Below, the kids are taking part in a scavenger hunt, collecting goodies by running between landmarks after viewing photo clues.  It was so fun!

Running for a clue!

Last weekend Skylar and I paid a visit to Jen, Zero and Molly in Portland (and had a fabulous time!). This weekend we had a wonderful Thanksgiving at Rebecca and Tim's, got and decorated a Christmas tree, and attended the girls' first ballet - Sleeping Beauty. Nora was a bluebird.  She did great! Tomorrow is the girls' four and a half birthday.  We're going to celebrate at the Divine Cupcake.

Holiday cards, calendars, and gifts galore await my attention.  They'll have to wait a little longer!

New Bed!

We love our new bed Gramma Rotzie and Papa Tom!  Grandma Mary and Papa Mike helped the delivery guys put it together and got us a mattress to fit in the trundle!  We are so big  :-)

It is so nice to be able to stretch out.  We even both fit in one bed together!  We read our books here tonight.  Merry early Christmas to us!

A few more little updates:

Evidence of child brilliance

Tonight before dinner, we were counting eight of something abstract, and when we got to six (with no visual cues), Paige said "two more to go!"

Skylar is achieving her language goals as fast as they can set them at the UO speech clinic  :-)  She gets new clear ear molds with pink sparkles soon.

What we're looking forward to

Both girls can't wait for baby cousin Cooper to be born around Thanksgiving.  We hope to plan a trip to meet him soon!

Tomorrow we head down to Wildlife Safari to see the animals. That should be exciting, and the weather should be fair.

November 27 is our half birthday.  4.5!

Our winter concert is December 7.  There will be singing and dancing, and videos are sure to be posted on this blog.

Ob la dee, Ob la da

The weather has turned cool, the days are getting shorter, and all of a sudden it seems like we're entering the holiday season.  Already?  Sheesh!  This post is dedicated to memorializing the little things my kids do nowadays, so I don't forget someday what four was like.

My Skylar, concentrating on drawing a kitty face on a mini-pumpkin.  She takes her artwork very seriously, and produces volumes of it weekly at school and home.  One of her best drawings is posted on the door to her classroom at school right now, showing herself, Paige, and four friends in a row, under the sun.  Once I get it home, I'll post a picture.  She always draws herself with lots of curly hair.

Paige and Skylar posing with the pumpkins they designed and assisted with carving.  To avoid the frozen cheesy smile they both have perfected, I had them look "scared" at each other.   Paige came up with the toothpick kitty ears, and then all four mini-pumpkins had to have them, of course.

They really wanted to hold the carved pumpkins, and these were the lightest/least likely to impale them with sharp points.  Note their same-but-different outfits.  They do this a lot lately - find similar outfits in different patterns so they coordinate.  They love each other dearly.  

Posing with some of our Goodwill Halloween decorations and my birthday bench from Gramma Mary on the front porch.  My first self timer picture with my new camera.  Not too bad.  

Behold, Her Majesties the Cupcake Fairy and Bee Princess.  Outfits are store bought and enhanced with accessories - wings and wands, and a fairy princess hat - handed down by cousins K & A.  We got all spiffed up and went to a Halloween Party with some of our original Birth to Three friends.  I'll spare you the pictures of Jim as Steve Jobs and me as an iPhone.  I did have fun joking that he invented me to please him.

My Paige, peeking up over the bus seat on the shuttle back to the car at the Mt Pisgah Mushroom Festival.  You can just barely see the Cinderalla face painting she requested.  She's holding her sparkly spider ring from Gramma Rotzie.  She's loving gymnastics class (particularly the trampoline and the swing) and has finally passed the 30 pound mark.  She can hold her weight up pretty well on the bars, and was doing very speedy somersaults with no hands last week.

The FM system continues to be a real asset for Skylar in the classroom.  Check out this link to an amazing video demonstrating the benefits of FM, and thanks to Annie Z for sending the link.

We've also started a weekly language class at the U of O, where S is the only hard-of-hearing child in a class of three with various language delays.  But the class offers two graduate students per family plus a program supervisor, speech assessment, activities, and reports, all the while supporting her IFSP goals and coordinating themes and sounds with her speech therapy appointments.  With this and gymnastics our schedule is full, but as someone recently commented, the kids have their whole lives to be over scheduled.  :-)

Rainy Day at Mt Pisgah Mushroom Festival

First Hike to Mt. Pisgah Swing

Another beautiful October Saturday. :-)

Mobile Blogging

Trying posting from my phone. Today we trekked out to Detering Orchards with the Gerblacks for some apple pickin'. Good times!

Lone Pine Farm

What a day on Saturday! Perfect weather, and lots of fun at Lone Pine Farm north of Eugene.  Enjoy!

A New School Year

Excuse my 2 week absence, for much has been happening on the home front! First and foremost, we are in the full swing of things for the new school year. Skylar's school schedule was up in the air, even after the official start of the year, because we had to have our annual meeting with her educational team before deciding on services. The big decision was whether to try a specialized classroom, with other deaf and hard of hearing kids, for part of the week, or stick with Montessori, enhanced with consultation services, speech therapy, and new technology.

Over the course of two 2+ hour team meetings, we settled on the latter. The tradeoffs are significant: DHH classroom is free (state funded), the ratio is about 2:1 (kids:teachers), the room is ideally set up for acoustics and technology (hearing aids, CI's, FM systems, and sound field amplification), total language-focused curriculum, and a wonderful teacher. And, importantly, the other kids share something very significant with Skylar - they are deaf or hard of hearing.

The benefits of Montessori that made us choose to stay there: an established community that Skylar loves and which includes her twin sister; her language progress there over the past 13 months has been impressive; the location and outdoor garden playground are superior; we appreciate and have seen the benefits of the Montessori method in both Skylar and Paige; and, we could switch DHH teachers to the one who actually teaches the DHH class, she would just work with Skylar and her teachers outside the hours her class meets. This last benefit was ultimately the thing that swung me to staying with Montessori.

Since making the switch, it has become obvious that the last 6 months or so have been difficult because we had the wrong match in a DHH teacher. Our new teacher is kicking *ss and making changes in a friendly, diplomatic way that was impossible to get from our old assigned teacher.

Nothing against her - in fact she was exactly what we needed when we first received S's diagnosis. A fierce advocate, a righteous deaf culture CODA (child of deaf adults), she understood the emotional whammy we were dealing with and helped us know it would be okay. Some of the things she taught us in the first few months, in fact, were re-emphasized in the JTC summer program - we just weren't ready to learn them in the beginning.

The new team is excited to do everything possible to help Skylar succeed. Even the previously-unwilling-to-make-special-accommodations Montessori teacher is wearing a boom microphone that transmits her voice directly to Skylar's hearing aids via tiny snap-on receivers. This FM system is the bomb chicken of hard of hearing technology - it elevates spoken instructions above background noise (a bugger of a problem in her classroom) and overcomes distance from the teacher (Skylar's optimum hearing range is 0-6 feet).

The teacher simply wears the headset microphone (there's nothing to it - Vogue!), and attaches the transmitter, which is the size of a flip phone, to her pocket or belt, and mutes it when she isn't speaking to Skylar individually or in a group. The team has even used it in the huge multi-purpose room during music class, and in both settings report immediate improved response from Miss Skylar. She is attentive, razor-sharp, eager to learn, and quite compliant - when she can hear you!! I'm very optimistic about the school year.

In other news, both girls had dentist appointments last week, and did phenomenally well. Paige sat through a full cleaning and fluoride treatment, then doctor check, including air being blown on a suspicious spot - with patience and grace. Her whole body fit on the upper portion of the dental chair when reclined. Hee hee.

Sky sat through four fillings, poor girl - she has extra-deep grooves in her teeth, making nice little holes for the sugar bugs. She did it with no anesthetic - just a little nitrous gas. The dentist was super quick with the drill, and they have a strict no pressure policy - they will not cajole or force a child to lie down or do anything else. She got through it on her second visit following the consultation. Phew!

So, happy fall to everyone. We're off to a great start!

Walking for Skylar's JTC Family

Walk4Hearing was a success! We raised over $700 for the Hearing Loss Association of America. THANK YOU SUPPORTERS!!!! It was all for the families we met at JTC, and it touched my heart that so many people from near and far donated to this great cause in honor of you all. You were with us on our shirts. And I can't wait for our first JTC reunion.

AVT

Hey! Video functionality is back on Blogger!

On Our Path

It's good to have a twin on your path in life.

Walk4Hearing

Donations are pouring in to support our family walk in the Portland Walk4Hearing! We will be walking in honor of all of the wonderful families we met at John Tracy Clinic.

I will add the names of all of the kids in Julie's class to Skylar's shirt. Paige will sport the names of the kids in Betty's class, and Jim and I will wear shirts with our supporters' names on them. I am getting all teary thinking about how good it will feel to walk for JTC and our new found friends.

Here is a link to Skylar's fundraising page. I invite you all to be a part of the walk to raise money for hearing loss awareness and advocacy.

Christmas Card Shot?

Four Going on Seven

So we've been at Lake Tahoe for the past week, which has been incredible, and I promise to post pictures soon. In the meantime, enjoy this little taste of my never ending wonder at my girls' brilliance.

The scene: Sitting at the table in the morning, playing with some matching cards with P and S. The first set matches opposites, like wet and dry, up and down, etc. The girls put these together with a little help identifying the words that go with the pictures.

The second set of cards is more advanced. These match consonant blends with pictures of things that start with those letters...so, SL matches with a picture of a slide, etc. We complete these with a little help, and then there are a few blends leftover that have lost their picture matches. One is CL and one is TH. To Paige, "what starts with CL? It sounds like CL...". Paige: "Clarence"!!!!

Clarence is one of the siblings she attended the sibling program with at JTC. She pulled both the sound and the memory out of her brain to make the correct association. (side note: Pam thought she said "clearance" and immediately declared a desire to go back to school to keep up with her granddaughters)

To Skylar: "what starts with TH? It sounds like TH..." Remember, this is one of the hardest sounds for Skylar to hear and discriminate. Words like "there" usually come out with a d sound (dare) and words like "thing" come out with a t sound (ting) or p (someping).

Her word? "thumb!". Showing me a thumbs up. Almost immediately. Is she really hearing the TH clearly enough to produce it correctly? Or is she reading it? Seeing the letters TH and knowing they start words like thumb that sound different than t or p?

I gotta get these girls reading.

New Camera!

I've been limping along taking iPhone photos for years now, since our point and shoot started eating up the battery juice in a matter of minutes. I know, I could have replaced the battery pack, but I was holding out for a digital SLR and Jim got me one for my birthday! I. LOVE. THIS.CAMERA!

Happy birthday to me!

Jim and me at King Estate Winery, S and P with best pals E and N, and my awesome cupcake-plate presents

School starts two weeks later here than most of the rest of the country, it turns out. So, next week we are off to loll about Lake Tahoe with Papa and Gramma Engelhardt, then Labor Day weekend, school starts the 8th, and my parents arrive that day as well! Can't wait to hear more about their Norway trip.

Happy end of summer to all.

Settling In

I still don't feel like we're back to normal life yet, after returning from JTC. Part of it is that it's summer, and things are slow and lazy with people being all over the place on vacation.

Most of our team members are on summer break now too, so I've given myself permission to take some time to mull things over, like exactly what to put in the PowerPoint for Skylar's teachers, etc. That being said, we have accomplished many small things since coming home, and that feels good.

1. Made an experience book from Skylar's class pictures. She sings the songs constantly. Tonight we had a nice chat about a few of her friends with CI's - specifically, Rebekah, Briele, and London. Then she said "but Raina doesn't have a CI..." Miss you Raina!

2. Watched the videos given to us on a DVD by the folks at JTC - including an 18 minute video of Skylar being given the PLS-5 language test. Our SLP is grateful to have access to these videos as demonstrations of AVT methods. You rock, JTC.

3. Met with Annie, another parent, and talked service options, school experiences, etc...she is a wealth of knowledge and a real fireball of passion about her son. She inspired me to be BOLD in advocating for Skylar!

4. Took the girls to swimming lessons daily for 2 weeks. They got pretty comfortable playing around, but don't want to put their heads under water yet. Paige did it yesterday at a pool party when I bribed her with 2 extra times down the big water slide ;-)

5. Got the stairway wall fixed and textured, ready for paint. The dust this job created inspired the deepest cleaning our living room has ever seen - which was strangely satisfying.

6. Ordered "Rebuilt," a memoir by a guy who gets implants as an adult, recommended by Annie. Arrived today - does it count as pleasure reading?

7. On my first day back to work, secured approval to reduce hours to 32, effective immediately. Very grateful for supportive peeps in the workplace.

8. A play date here and there...ice cream, swinging, sliding, park.

9. My b-day is Saturday, and I'm looking forward to my "secret" present from Jim and whatever the girls cooked up for me, plus a fun dinner out with our dear friends Tim and Rebecca and family, then cake and ice cream on the new deck we are still paying off. :-) Night before, I'm getting a massage and Jim is taking me to King Estate for fancy wine and dinner.

10. When we venture to Tahoe in two weeks, we will camp on the way down and on the way back up, thusly getting some campout time in this summer, by the skin of our teeth!

jTC Reflections - Letter to Paige

On the next to last day of the program at JTC, the parents joined the siblings for a picnic on the lawn. After we ate a delicious lunch of Freebirds burritos and quesadillas that Paige and Grandma Rotzie picked up, Jim and I read Paige letters we had written her a few days before. Here is my letter.

Dear Paige,

I love and adore every inch of you. Your bright smile lights up my day. When you were born, my life changed forever - I became a Mommy. Now I see the world through your eyes - observant, curious, thoughtful Paige.

I remember your first words, your "toast in the tummy" video, our trip to see Katie and Anika. Mommy-Paige time is very special to me.

Always believe in yourself, Paige - because you can do anything. Just don't grow up too fast. Four is a wonderful age, full of wonder and excitement about all the things you are learning and doing.

Daddy and I will always be there for you when you need something - advice, support, a shoulder to cry on - and to watch you do amazing things. I love you with all my heart.

Mommy

JTC Week 3

Top 10 Reasons I Don't Want to Leave JTC:

1. We have learned more in the three weeks we have been here than we did in the whole year we have known about Skylar's hearing loss.
2. The other parents and kids are such an inspiration. Today's mom n' kids hangout time on the lawn while the dads went to a Dodgers game was...blissful. Just having a good time, sharing stories with people who understand what we are dealing with.
3. Skylar's Audiologist tested MY hearing today, for free, after I told her I still have the plugged up feeling in my ear (day 8). Get this - I have a sudden SENSORI NEURAL (inner ear) hearing loss of 20-40 dB in my right ear - mild hearing loss. Don't know yet if it's permanent - visiting House Ear Institute on Thursday.
4. I have had time to reflect on our lives in Eugene. There will be changes when we get home. Things on my list include reducing my hours at work; visiting Tucker-Maxon Oral Deaf School in Portland; learning about available Audio-Verbal Therapy in and around Eugene; buying a round table for our dining room (better acoustics/access to visual cues); and bringing an advocate (likely another parent - Annie Z, you're at the top of my list!) to our annual IEP meeting in late August.
5. Deaf Adult and Deaf School-Age Panels. These sessions were so informational, reassuring, and inspirational. I am PUMPED UP to volunteer in the classroom, make a book with Skylar's picture on it to show all of her professionals and teachers, and tackle sibling one-on-one time and jealousy issues head on. Watch out. I'm turning into a giant Mama Bear (if I'm not already one).
6. Julie - Skylar's teacher - is such a talented, natural teacher who meets kids where they are, challenges them to reach their potential, and helps parents understand how they can best help and advocate for their children. I'm putting her in my suitcase.
7. Charissa - Skylar's Speech and Language Teacher - patient, knowledgable, strategic. She has instant rapport with all of the kids she works with. Is there room in the suitcase for her, too?
8. We have future vacation/JTC reunion options around the world! London! Paris! Nova Scotia! DC! Alberta!
9. The environment here is so supportive (thank you Mary Beth, thank you Angie, really thank you all of the staff at JTC) that I know it will be so much harder to make progress back home. We will be "on our own" again.
10. Cochlear implants are normal here. They are on almost every kid. I am not scared of them anymore. The adult panel especially, showed my how powerful a tool self confidence is. If Skylar needs them in the future, that's what we will do - and she will do great with them. The technology is such a gift.

Throughout the list is embedded the theme of the wonderful relationships we are forming here. They will last a lifetime.

Mom's Night Out

Popsicle Girls Avery, Briele, and Skylar

Ava, Skylar, and Paige at Disneyland

JTC - Halfway Point

Daddy and Skylar doing Audio Verbal Therapy

I can't believe it, but we're more than halfway through our JTC experience. This week has really flown by. We had a fun pizza night on the lawn with almost all the families on Wednesday, and today Paige and I toured the LA fashion district - oo la la! Actually it was mostly cheap stuff but we had a good time strolling and perusing all the fabric and clothing booths, especially along Santee Alley. This evening we ended up back at The Grove for some food, shopping, music, and people watching. Favorite moment: trying to find local produce at the "original farmer's market"...there was ONE produce stand, the rest were various food and gifty items, although the layout was typical of the indoor markets I've seen back east and there were several institutional eating establishments, like the ice cream place that has been there since the 40s. Anyway, "farmer's market" means something different in Oregon. The blueberries I sought out turned out to be from Fairview, Oregon (about 70 miles from our house). We are so spoiled in Eugene.

Chocolate Shake

New friends at the picnic/pizza night

A Four Year Old Moment

The scene: outside BJ's Pizza on El Toro Road, Orange County, waiting for our table. I am explaining to Skylar about making a wish and throwing a penny in the fountain.

Me: so you can wish for anything you want, like world peace, or a pony, or whatever you want.

Skylar: a pony, a pony!

Me: ok, throw your penny in and make your wish! (we throw the penny in together)

Skylar: (immediately) where's my pony?

JTC Week 2

The weekend following Week 1 was full of fun adventures including the afore-blogged-about aquarium trip, a huggy-sendoff for Gramma M. at LAX (we miss you already), an afternoon at the beach with Gramma R and Papa T, an over-nighter at their house, and the annual JTC picnic. I don't know how my brain will be able to retain all of the fun stuff we are doing along with the academic learning - but maybe this blog will help me categorize, look back, and remember. Speaking of this blog....just how many of you are out there reading anyway? Could you do me a favor and either comment on or check a reaction box to this post? Thanks.

Gramma R took some really wonderful photos of the four of us on the beach. Here is one of my favorites, and I'll get the rest up in a web folder sometime soon and let you all know when I do. Thanks Gramma for these images; they are priceless!

I was fighting a throat and ear bug over the weekend, and it continued to drag me down through today - poor Paige had to accompany me to urgent care and then the pharmacy this morning so I could finally treat my ear infection. Yep...MY ear got infected. Plugged up. Couldn't hear a thing. Now on amoxicillin and things are looking up.

The first two days this week have featured some extreme highs and lows in the hearing loss information arena. On Monday, Sky had her first full audiological evaluation at JTC. The team is VERY good, reports Jim, who was observing Sky in the booth. She did awesome, powering through an expanded range of frequency testing for both ears without getting tired or frustrated. It helped that it was 9 am and she got princess stickers AND nail polish.

The low came when we saw the results; there has been a 20 dB drop in some frequencies of Skylar's hearing since her ABR last November. This means her hearing loss is progressing, as we feared it would, leading to all kinds of questions and emotions about what to prepare for, how to prepare, and what to do. Could she lose the rest of her hearing soon? How low will it get? Will she need CI's? Do we want them for her? The amazing thing about JTC is that the very next day, today, the director and surgeon from House Ear Institute came to lecture on that very topic. Jim recorded the audio for me since I was with Paige. But first things first: the JTC audiologist turned up the power on her HA's and Sky appears to be noticing more quiet and distinct sounds as a result. We will need to monitor the new settings and ask her about what she's hearing over the next several days.

The high came today, when we met with Charissa, the AVT/Speech therapist. Charissa has been doing language assessments with Skylar, and is not done yet, but shared some initial results with us today. On the preschool language scale test (PLS-5), Skylar answered a series of questions related to auditory comprehension and scored above her chronological age as compared to her hearing peers. More specifically, she scored at the 57th percentile for kids her age (4 yrs 1 mo), putting her age equivalency at 4 yrs 3 mos. This bit of news validates the rapid progress we all know she has been making since she received her hearing aids last August. If she had taken this test back then I know she would have scored well below kids her age in comprehension. To see that she is not only caught up in this area, but slightly above average as compared to her *hearing* peers almost made me burst into tears.

Another good thing, and this one is growing in its goodness, is that through all of the new information, a-ha moments, and scary tests, there are inspirational stories and really good new friends. JTC does a fabulous job of helping the summer session families create a community. Tomorrow I'm looking forward to hearing from a panel of deaf adults. In the evening, all of the families are meeting for pizza night in the lounge. Yes, I helped organize it. :-)