Lizzie meets her team at OHSU

Dr. Pinter is obviously passionate about his role and
the people he helps.

This was no ordinary six-month appointment. Of couse, Lizzie is no ordinary six-month-old. So it follows that this was an extraodinary experience, starting with the wonderful pediatric neurologist who directs the Down Syndrome Clinic at Oregon Health Sciences University - Dr. Joe Pinter.

The OHSU clinic is among a handful of its kind in the United States. How fortunate we are to have one in Portland. Such clinics are more costly to maintain. But the benefits for families are tremendous. The clinic concentrates teams of specialists in one place and provides comprehensive care.

Our five-hour appointment started at 12:30pm Friday with checks of Lizzie's weight, height, blood pressure and pulse. All checked out great - she falls in the 15th percentile for height and weight. Her blood pressure and pulse are a little higher than mine but nothing unusual.

Then we visited with two audiologists. Lizzie didn't enjoy this part but we learned a lot. The first test sent signals of varying frequency through her ears to gauge specifics about her hearing and the second was a simple test of ear drum activity. Lizzie's left ear continues to pass with flying colors; her right ear has a little fluid that will likely necessitate tubes in a couple years. We were reassured that she is hearing us and the fluid is not causing any hearing loss, just some muffling on one side.

Next... speech therapy. The common abilities for a six-month-old are imitating those around us, taking turns, and making consonant sounds like ba-ba-ba-ba and da-da-da-da. We have some work here. Lizzie makes vowel sounds and mimics you when you smack your lips together in a kiss. In the coming months, we will work harder on the consonants and games where you take turns.

Physical therapy followed with a team of four therapists.

Lizzie rolled front-to-back and back-to-front, showed off her neck strength and her tracking. She is excellent with following objects and turning towards people who enter the room.

While she tracks well, we are going to follow-up with Casey Eye Institute for further vision tests. Sometimes she appears to have a lazy eye, which is a result of her lower muscle tone.

I've listed many things here for us to follow, including tubes for Lizzie's ears and the lazy eye. These are common to people without Down syndrome, too.

I had tubes in my ears when I was 3 years old. I've known several people who have lazy eyes. One of the things we learned on Friday is that Lizzie is more like us than anything - she has our genes (just some extra genetic material).

The extra chromosome does cause a handful of differences. As a result, one of Dr. Pinter's objectives with the clinic is genetic research to understand the conditions that go along with Down syndrome and possibly work to proactively prevent and treat them. Lizzie's statistics will join his database of research. And the clinical and developmental data collected is intended to help professionals and parents get a better handle on what is normal for children with Down syndrome.

We spent the end of our afternoon with Dr. Pinter, learning more about what to expect from Lizzie, the resources in our community, and how we will be a part of the clinic in the coming years.

The fact is, we are living in a more enlightened time for Down syndrome and other genetic conditions. Children and adults with Down syndrome are accomplishing amazing feats and are becoming more accepted. I'm not going to be the one to force Lizzie into a classroom of peers if she isn't ready, or if she will hold the others back. At the same time, I'm learning about opportunities to integrate her into schools or activities that are "appropriate." She will have her unique place in this world that she carves out just like the rest of us.

California meets Portland

This post is so far-outdated.... I put it together after grandma's birthday in mid-March but never posted it because I thought I'd take time to write a story. Instead, I want to share these fun pictures so bad that I'm just going to make this a picture post!

Grandma Patti turned 70-something on March 11. I know the age, but I also know she doesn't
usually like to share it! Here she is at her birthday party at the Chart House with the grandkids.

Remember when our little family went down to California for Christmas and we were welcomed over, and over - for celebration after celebration. Well in March, California came to Portland! And everyone took advantage of what our beautiful northwest region has to offer.

To celebrate grandma's birthday, we got a giant room at the Chart House in the West Hills, with a gorgeous view of Portland and the Willamette River. Grandma's kids, grandkids, great grandkids and friends flew in - mostly from California. I can't recall the exact number... but I think we had about 30 people!

The family stayed for several days to soak up everything Portland.

My grandmother's oldest son - Uncle Butch - and his wife Dana took their kids to Voodoo Donuts in downtown before donning rain jackets to hike Multnomah Falls with coffee cups in hand.

My sisters Leslie and Jamey and her husband Adam (along with their two kids) stayed with us and the little cousins had too much fun! The morning after grandma's birthday, Jamey and Adam went to wine country to visit friends and Erath.

Cousins playing dress-up!

The night before grandma's birthday we did a first for everyone - Kava. Our dentist friend's son owns a Kava bar on SW Division. It's some sort of root that is said to create feelings of euphoria, relaxed muscles and sweet dreams. Oh yea, it also numbs your lips and gums because it is consumed by drinking an awful tasting potion.

Uncle Butch played bartender. The Kava came in these big bowls along with cups for each of us.

A few sips of Kava, and Uncle Chris (grandma's youngest son) found himself with a guitar.

Aunt Dana and Marci toast their Kava and down it quickly...

The night of grandma's birthday, we made sure to capture plenty of memories!





Just another manic Monday

The girls hanging with Uncle Chris at Grandma's

It was the wee hours of Wednesday when I wrote this, and I was still recovering from a true Manic Monday.

Nothing went right. Nothing went according to plan.

Let's rewind to Sunday evening.

I decided to spend the night at my grandmother's house to help with her meds, food and other care. Maddi was supposed to stay with me and we would have a slumber party. Instead, she opted to go home with dad while I stayed with grandma. (change #1)



Monday morning came, and Maddi needed to get to school. Originally, I planned to head home and get Maddi to school by 8am.  Instead, I stayed at grandma's to continue helping (change #2).  I texted Elliott about the change, asked him to pack a lunch and have Pam (aka Mary Poppins, our nanny) take Maddi to school. He never got the text.

At 8am, Elliott called me to check-in and then he realized he had missed the text. Maddi was already late to school. I asked him to call Pam. He misunderstood, and thought I was to call Pam (change #3).


Pam and Maddi (3 years ago)


At 9am, Pam called wondering what to do. Hmmm... I thought Elliott was going to call? By this time, we'd had so much miscommunication and confusion it was getting funny.

Pam hastely dressed Maddi only to find out her FAVORITE light-up shoes were at grandmas. We also had no bread to make her a sandwich for lunch. Yikes! Always thinking on her feet, Pam somehow convinced Maddi to wear sandals (Pam told her that if she found the light-up sneakers, she'd bring them to school. Bingo!). Then Pam texted me to see if a lunch-able at Fred Meyer would suffice since we had no food in the house.

Of course. But I warned her... just make sure you go to this particular Fred Meyer with an elevator in the parking garage, or else the 4-year-old will make sure you know that you're in the wrong place!

Once that was all settled, the day moved along fairly smooth -- for all of us. I got home at 4pm, checked in with my friend Kati about going to the gym, and Pam left for the afternoon.

But Manic Monday came zooming back. As I packed up Lizzie to get Maddi from school and head to the gym, I realized her carseat was nowhere to be found.

Uh-oh. Pam had left our house with the carseat still in her car. Well, forget going to the gym. Oh and how would I pickup Maddi from school. In comes our hero for the day, Sara Rose who kindly offered to bring Maddi home (her daughter also goes to Maddi's school).

It was just another Manic Monday.

It's a bright future, don't sigh for me

Snuggle-bunny

Please don't shake your head and say I'm sorry.

Save the sigh with a long harumph for someone else.

When I tell you that my 5-month-old daughter has Down syndrome, congratulate me.

Congratulate me for a healthy, beautiful baby who has a future as bright as the next child, who has huge opportunity on the path ahead, in a world that I know she will challenge to keep pace with her pursuits of a new norm. A norm where people are not judged or limited by a diagnosis but instead supported and championed for being unique.

This week, columnists filled our newspapers with stories of triumph. And I'm not talking about the NBA and Stanley Cup playoffs. It's closer to home, in many ways.

Two articles in the Oregonian showcased a young runner who won her race despite crossing the finish line dead last: http://www.oregonlive.com/sports/oregonian/john_canzano/index.ssf/2012/04/canzano_a_big_moment_at_a_yout.html and http://www.oregonlive.com/sports/oregonian/john_canzano/index.ssf/2012/04/canzano_story_of_the_girl_who.html.

Then, columnist George Will shared his 40-year-old son's "gift of serenity" with millions of readers. (http://www.dallasnews.com/opinion/latest-columns/20120503-george-will-the-gifts-of-jons-down-syndrome.ece).

Playful Lizzie reaching for toys

I know it's not all about triumph and serenity. Gosh, parenting is about so much more.

I also don't mean to put a blanket over all of those who respond positively when I share our news. In fact, most people are excited for us. They embrace us with such love. A previous co-worker who once worked for Oregon's state mental institutions (which were closed decades ago), met me for breakfast last week and said, "I don't think I'm going to have the response that many have had for you. I think you are going to have a wonderful journey and experience."

I couldn't agree more.
 

But before I met Elizabeth, I was one of those people who would have said, "I'm sorry," with a long sigh.

Lizzie is a sister, and much more



I was one of those people who thought having a special needs child would alter things for the worse, not the better. As I reflect on those early days, I blame the media, our society and our doctors for this because I was afraid. Would you believe that the popular http://www.babycenter.com/ calls Down syndrome a problem?

Here's a quote from the site: "Many parents-to-be worry that their developing baby may have Down syndrome or some other chromosomal abnormality. Screening tests help you assess your baby's chances of having this kind of problem." 

No wonder why we are so fearful. No wonder why I'm so anxious to brag about Lizzie to others, yet wonder whether I should tell this person that she has Downs. If I do, I am uber-quick to preface it by: "Lizzie is unique and we are thrilled to raise her. Lizzie has Downs." This is somewhat out of self-protection.

But sometimes I'm not quick enough, and then come the sighs and the apologies.

I get it. That was me in the early days. I was so fearful that I became depressed, suffered from post-traumatic stress, and simply had no will to move forward. Lizzie slept and slept, for days. I wish I could have enjoyed those days.

That was then, this is now.

 

Think about how fortunate we are to have Elizabeth, our little angel who doesn't have a "problem" (as http://www.babycenter.com/ calls it) nor is she "disabled" as others would label her. Instead, she is my daughter, Madeleine's sister, Samantha and Abigail's cousin, a niece, a granddaughter and a friend.

She is a little girl who started rice cereal today, just like other 5-month-olds. She sits up (propped against the couch), she loves tummy time far more than her big sis Maddi did, she tracks objects, turns her head when someone enters the room or calls to her, snuggles with a grip so hard that you never want to let go.

I understand when you say, "I'm sorry."

I was there. But I've learned, and I hope you will too. Don't be persuaded by the media or the doctors. Follow God. Follow your heart. I promise you will see the beauty in others that may not be exactly like you, and you will grow as I have.

Well hello old friend

Grandma Patti coloring with Maddi in March, just after ending
five weeks of radiation and chemo treatments

Last month, I barely posted a word on this blog.

It was a busy time.

The mix starts with being a CPA. It's my spring busy season. Then throw in a few emergency room trips for grandma, getting Maddi registered for nine summer camps (one per week), organizing three summer vacations, and comforting Lizzie through early teething.

It was a busy time.

I've missed you old friend. Three months ago, I found solace through writing this blog, spilling conflicted emotions and stories onto these pages as a way to remember, work through and share what I felt at the time was an overwhelming task. With Elizabeth's unexpected diagnosis of Down syndrome in November and grandma's diagnosis of primary brain cancer in January, I was dealt a hand that few receive in a lifetime.

My little sis, Lillian, with the girls

My blog was a way to find comfort. At the same time, it became my long-sought after means to document our life through words and pictures that I could leave behind for our kids. I plan to print out these pages and pictures into books every 6-12 months so that our experiences and feelings are not lost. Instead, the girls will have a way to understand just what mom was thinking when....

...Lizzie joined us amidst respiratory distress, low blood sugar and an unpredictable diagnosis of Down syndrome. In the early days, I wondered what this meant. Would she walk? Talk? Love us? Could we love her?

...Faith taught me that I'm not walking alone. Instead, God is by my side.

...Holidays brought our family together. At Christmas, we jumped from house to house, visiting dozens and dozens of relatives who welcomed us with open arms.

So I think I'm back. Back to documenting our life on these pages that I will eventually print into books for lasting memories of a remarkable experience - life!

I'm on your side

On a weeknight just less than a month ago, I packed my pillow and comfy quilt, headed up to Oregon Health Sciences University hospital and slept on a fold-out cot just inches from my grandmother's bedside.

She was hospitalized after a blood test showed her levels of white and red blood cell counts were dangerously low. This was an unexpected turn of events. Despite a diagnosis of brain cancer, we thought treatment with chemo and radition would improve her outcome. Instead, the chemo is attacking her bone marrow. A drug we thought would help is fighting us.

That night, grandma and I watched some TV, ate dinner, and drifted off to sleep.

At midnight, the alarms went off because her fluid bag was empty and needed to be switched. At 1am, they rolled her off to get a chest X-ray. And at 4am, I left my cot and crawled into her hospital bed. I wrapped my arms around her and we fell back asleep.

You would do that for your best friend, right? I would.

I did it because I couldn't bear to be away from her; I couldn't bear for her to be alone; I couldn't bear for her to feel she was missing something. Instead, she was the center of attraction in my life for several hours (even though a few of those were while we slept). I was by her side and I'm on her side.

Gosh, grandma... please, please snap out of this! It's not fair that you have brain cancer and that your physical body is fighting against you, against all of us who love you so much.

A night in the hospital turned into several days and turned into more than a week. It was a roller-coaster. Blood tests everyday to determine the next course of action. Rounds of doctors visiting in the morning and at night. Then came the hospital-induced delirium. In the morning, grandma was always asked her name, her location and the president of the U.S. As the days wore on, the answers became more and more difficult for her to find. In fact, those of us there started having a hard time finding the answers. Delirium set in for us, too... no surprise.

Finally a week and a half later (plus 2 transfusions), grandma was released to the Ritz Carlton of skilled nursing centers in the most beautiful area of Portland. Only she doesn't see it as the Ritz. She wants to go home, to her condo where her things are, where her memories are. As we enter this next phase, the most important thing to do is honor grandma's wishes. Do you want to go to the beach? OK. The mall? Sure. Eat candy and ice cream? No problem.

The doctors finally disclosed to grandma this week that she has a "limited" amount of time. We all do, in fact. What do you think topped her list? Going home. Seeing her great-granddaughters (Maddi and Lizzi). Getting to Hawaii. I think all that can be accomplished. At least I hope.

For a woman that stood by my side for 35 years, I want to help facilitate all of this. You see, this is a grandma who believed in me when I got suspended in high school for something I'll disclose another day. She talked to me from 1,000 miles away every day as a drove between Boulder and Denver to work the overnight shift at AP. It was 7am when I got off work, and she talked me all the way home to make sure I was safe. This is a role model who taught me about dining at the country club, writing thank you notes or any type of note for that matter, making sure I was well-kempt (all the time, regardless of the situation), wearing fine jewelry and using fine China instead of stashing it away for "special occasions." Every day is a special occasion. Live life to its fullest while you are here.

I will always be by her side, and on her side. Her wish is my command.

Pizza, toys, playdates - it's Friday!



Special Friday lunchable

“Is it special Friday, yet?” Maddi asks.

All week long, we talk about “Special Friday.” Think half-day preschool instead of all day, pizza for lunch, playdates with BFFs, family dinner and game night. As an added bonus because of all the fun: On Saturdays we sleep in (until gymnastics at 9am).

In a house where both parents work, it’s essential to find “special moments” to look forward to. All week long, we plan for Friday. While we’re getting dressed at 8am for school, rushing to make dinner and do the wash at all other times during our busy week… we talk about the upcoming Friday. What will make Friday special this week. Of course, “special” has evolved over time.

As an infant, dad created Maddi’s first special Fridays. He scheduled himself to go into work late on Fridays and spend the morning with Madeleine. They picked a different breakfast spots, such as the Pancake House or La Provence. Elliott gained tremendous confidence with our tiny infant as he learned to do the diaper bag and much more during those special Fridays. After a few months or more, he needed to spend more time at work.

Special Fridays took on a new form.

Grandma Patti with Maddi

Maddi and her friends meet at Park

In her 2’s, Maddi spent special Fridays all day at grandma Patti’s, tooling around Lake Oswego, walking the neighborhood to complete errands at the post office, the bank and finally a visit to the park where they would often run into friends, Kate and Carter. Each Friday in 2009-10, I would drop Maddi off at grandma’s apartment.

Grandma would get up early and place a teddy bear on her doorstep holding a napkin full of jelly beans (likely the cause of her first cavity that we learned of last week – the fun outweighs the cavity, though). Special Fridays at grandmas also meant a morning to relax, watch cartoons and cuddle with each other. Grandma made special soup and kept Maddi full with tons of fresh berries. They often visited Frog Pond toy store, also within walking distance of grandma’s apartment.

Now Maddi’s a preschooler, and Special Fridays continue with a new twist.

First day of preschool

Elliott started this one, too.

Together we decided to make Fridays only a half-day at preschool. Elliott drops off and I pick up. Since Elliott isn’t much into packing a preschool lunch, he started a new tradition. On Friday mornings before school, they swing by Fred Meyer and Maddi picks out a Lunchable Cheese Pizza. It’s the most unhealthy meal I’ve ever seen, filled with a pizza, a Capri-Sun and Laffy-Taffy. I guess not all lunches must have the balance of fruit, veggies and dairy – as they do Monday through Thursday. Splurging is fun – it makes Fridays special.

I pick up Maddi early from school, at noon. We find something fun to do like a playdate or a park visit or a project when it rains. On some Friday nights, we celebrate Shabbat because she goes to a Jewish school that sends home all the fixins’, including candles, challah and a Kiddush cup.

This week, I did Special Friday. Maddi, Lizzie and I started at Fred Meyer to pick-out pizza, grabbed rainbow of tulips, and of course had to buy one of those silly check-out stand must-haves at kid’s eye-level (this was a miniature Cinderella). We got to school, and we could already hear the Shabbat singing in the ballroom with about 80 toddlers and nearly as many parents. Rather than drop-off Maddi with a kiss and hug so that I could dash off to work, I made time to hear the music.

Lizzie and I took a seat with Maddi and her classmates and sang for about an hour. We sang the prayers and enjoyed a spontaneous moment.

Maddi with classmate, William, celebrating Shabbat last Friday

Work deadlines were looming. Those will always come and go, and I’ll meet most of them. It’s April 1st – my deadlines now are very tight as a CPA. However, Special Fridays will always remind us to slow down, listen to the music, and treat ourselves.