Sunday, December 8, 2013

A Gift of Possibility and an Ellie Update

This post is going to be a photo bombed update on Ellie, but first I wanted to write about a something very near and dear to my heart. 

A group of us mamas with babies with T21 have embarked on a journey together. Our mission is to help new or pregnant moms receive accurate and up-to-date information when receiving a Down syndrome diagnosis. My friend Jenny was able to explain it much more eloquently on her blog Blessings Beyond the Ordinary. The first step we are taking is sending out our personal Christmas cards to medical providers. Our hope is to give them a glimpse into what life looks like... and how it's just like any other family! If your child has Down syndrome, please join us and send your card to your medical community too! Our pediatrician, the Ds Clinic, and my OB will be receiving our card this year. This should be interesting as my relationship with my OB ended on an awkward note... more on that another time!

Our 2013 Card

I also wanted to update on what we've been doing the past couple of months.  Ellie is now 11 months old. We have had a really fun and crazy busy couple of months since my last post. Ellie has had her first Halloween, Thanksgiving, attended a fancy gala, met Santa Claus, met new friends named June and Katie, and is meeting milestones on Ellie time. 

Ellie's mentor Iris was featured on the cover of the 2013 Nike Special Olympics Youth Games Booklet. The Youth Games invited Iris and her mom to the Governor's Gold Awards. They were given the option of bringing a guest, and Ellie and I were invited to go to! All proceeds from the event benefit the Special Olympics. It was such an honor and a night I'll remember forever. We were served a nice fancy dinner and Ellie and Iris were the only children there from what I could tell. They were such good girls and sat patiently through the whole event and were adorable and smiling the whole time.  What an amazing opportunity!
Iris on the cover of the booklet, little rock star!
Our girls all dressed up!
Speaking of Iris, I have to share some fun things she has been up to lately. She had an opportunity to be in a new movie with Reese Witherspoon called "Wild" being filmed in Portland! I'm anxious to watch the movie to see if Iris makes the cut. And I am in love with this video of Iris busting a move in San Francisco a couple of months ago. Miss thang has some serious skills! It has been really great to have Iris as Ellie's mentor. I'm asking her mama questions daily and am learning so much. I am one lucky gal! 

Iris Breakdancing

Ellie is still getting bi-monthly Physical Therapy and Early Intervention. I'm lucky that my mom-in-law is here two days a week and my mom is here on Fridays with me. They help out a lot with her therapies, and it's nice to all be working on the same things with her. Ellie is working hard every day and can stand perfectly when you hold on to her hands, but isn't ready to stand on her own yet. The other night, however, Luke was playing with her, stood her on her feet, and let go. You should have seen the look of excitement on her face! She stood for a few seconds and as I was screaming for him to grab her, I snapped a picture (BAD MOM!) but she's fine, she didn't fall! Her crawling is not happening yet. She gets up to crawl and when she tries to take off she gets in skydiving mode. See below. She'll get it, it's just taking a little extra time and that's OK. She is also waving now, playing peek-a-boo, as well as "how big is Ellie" which is the cutest. Here is a video of some of her neat milestones the past couple months:

Ellie 10 Months Old

Look at me, I'm standing!
Getting ready to crawl!
Annnnd she flies instead.
Trying Cheerios for the first time. Hmm...
Family Halloween Pic!
Thanksgiving at our house was a blast. We had 20 people and our house is STILL UNDER CONSTRUCTION. The remodel started in August and it's looking like it won't be done until after Christmas. I've decided that prolonging it will just make me enjoy it more and be more grateful when it's done... (keep telling yourself that!!!) Here's a pic of our table. Luckily my mom set the table for us because I have no clue when it comes to this stuff. 
The long table(s)
Jesse smoked and cooked a 25 pound turkey on our traeger and it was AMAZZZIIINNG. Speaking of my talented hubby, he made me a barn wood wall too. I LOVE IT! And it works great for a photo backdrop. Ellie was snuggled and kissed and showed off her new skills all night long. All in all, it was a great day and our hearts and bellies were full! Here are a few photos from that day.

The wood wall, and beautiful kids.
With Uncle Kev and Grandma Barbara
Grammee calls this "getting the party started" and I am loving the coordinating outfits!
This is what she does when you say "how big is Ellie?" 
We finally met my friend Kim's sister June. Kim was my friend I talked about in my last post. Kim invited us to watch June perform in her Cheer Showcase. June is awesome, sassy, beautiful and has the best giggle I've ever heard. I loved talking to her and seeing a glimpse of what Ellie could become. I have to admit I teared up a couple times watching June's cheer performance at StyleShock Cheer and Dance.  And you best believe I will be signing Ellie up for the program when she's old enough! It was so inspiring to watch the performance and meeting June and her mom made my day. Thank you again Kim!
Ellie and June at the Cheer Showcase
While I was standing chatting after the performance I met a mom of an 11 year old little girl named Katie who has Down syndrome. This woman was a wealth of information. Her positive outlook was inspiring to me. Talking to Katie about the slumber party she had the night before with her BFF made my heart smile. She seemed like any other 11 year old to me. She is absolutely gorgeous and we talked for quite a while. She was wearing pretty green eye shadow and I couldn't help but think of our girl when she is her age. I swapped numbers with her mom and am looking forward to learning from her in the coming years. Here is a photo of beautiful Katie. I also want to share an uplifting and inspiring article that was written about her last year. Isn't she just wonderful??

Article about Katie

Katie at the Cheer Showcase
Yesterday we took the kids to see Santa. I loved when Luke nervously told Santa he wanted a purple Easy Bake Oven, and how Will told Santa he wanted Pokemon cards only to realize afterward that he forgot to tell him which ones. While no one was looking he whispered to Santa all the names of the cards he's hoping for. Ellie wasn't sure what to think, but she didn't cry so that was a plus! She just stared curiously at him, and at his beard. 
I think she's questioning the beard. I know we were!
We are really looking forward to Christmas this year. It is crazy to think that this time last year I was hugely pregnant and oblivious to the journey our life was about to take. We had no idea what 2013 had in store for us. I'm especially grateful this year for our family and friends because we couldn't have made it through this year without the constant love and support from them. I'm also amazed at the magic around meeting other families who are in the same shoes as us, it's almost impossible to explain. But what I do know is that it feels right and I know we are exactly where we are meant to be.

The song I chose for this post is one of my all time favorite Christmas songs. This part always gets me misty-eyed, and this year it means more than ever. 

I remember dreaming
Wishing hoping praying for this day
Now I sit and watch them
The little ones I love so excited by the wait 

Tuesday, November 12, 2013

The "R" Word

Back in July I shared the below on my Facebook page regarding the R-word. 

"Growing up, I used to use the word "retarded" to describe something that was stupid. I've removed this word from my vocabulary- and ask that next time you say it please think of this little face.  it's not funny, it's hurtful. Thanks my friends" 

I'm still new to this "advocating" business but was feeling pretty happy with the outcome. I was overwhelmed with the amount of love and support I received from this post. I had friends reaching out to me that I have not talked to since high school saying that they still say this word, and had never thought of it being offensive. But now they were "aware" and would think of Ellie first. I had other friends and family members who knew all along that it was offensive and it had never been a part of their vocabulary. It was the first step I had taken to stick up for my daughter. I felt good and like I was making a difference- even if it was baby steps. But I'm finding that there's still a lot of work to be done.

The very next day, I was in the office of someone in leadership function in my company, and at the end of our conversation he said "it's just so retarded!" referring to something work-related that was stupid. I was frozen. I didn't say anything, just smiled and walked out of his office. I had a moment where I wanted to smack myself in the forehead and say "IDIOT" like Chris Farley. I had an opportunity to stick up for Ellie and I didn't take it. I folded like a cheap suit (as Jesse would say).

My awareness of this word being inappropriate did not come to fruition with the birth of Ellie. About 4 years ago, I was in the lunch room at work chatting with a good friend and co-worker, Kim. We were talking about switching from a PC to a MAC. I had never used a MAC before and am not confident in my skills. As we were talking I said "I can't switch computers, I'm retarded as it is!" and at that moment, as I was looking at her, I thought of her sister. My friend has a sister with Down syndrome. We continued our conversation, her facial expression or demeanor didn't change at all but I walked away with a lump in my throat and my foot in my mouth. I felt like a complete jerk. Upon getting back to my desk I was almost in tears and sent her an apology email. Of all people, I should know better because I have my brother Danny. Why the hell did I JUST NOW realize this word is offensive!? What is wrong with me?! She was very sweet in her response back, but that experience has stuck with me since that day. And when Ellie was born, one of the first people I reached out to was Kim. She even joined us for our first Buddy Walk in Ellie's honor! Thank GOD she forgave me!

One afternoon when Ellie was around 6 months old, Will was playing video games with his buddy. This little boy said "Argh, the guy in this game is so retarded!" Immediately I heard Will say, "Hey! That's a bad word, you can't say that in our house!" I was so proud of him. I know lots of kids use that word and have no idea that it can be hurtful. He had no problem sticking up for her. Why can't I be more like him?

As time is ticking on, I have had some very candid conversations with family and friends about saying the R-word. Luckily I am comfortable enough to bust out our close friends when they say it, but I also am afraid of being that "overly-sensitive mom". I finally had a full blown open-hearted conversation one night over cocktails with my closest girlfriends. My friends were saying that when they say the word, they aren't talking about Ellie. They are just using it to describe something that was stupid. That it wasn't in reference to her, at all! As hard as I tried to explain that it's offensive and hurtful to me and to Ellie, they explained I need to focus on who is saying it and the intentions behind it. So with that, the conversation ended and we did not come to a truce. I was feeling like that overly sensitive new mom to a kid with special needs again. Over the past few days the conversation was sinking in and I decided to ask my brother Danny. I can't ask Ellie how she feels when people say the R-word, so I asked him. Here are his answers, from his point of view:

Me: "Danny what do you think of the word retarded?"
Danny: "I don't like it."

Me: "Have you ever been called retarded?" (I already knew the answer to this from stories I've heard about his childhood but wanted to see what he said)
Danny: "Oh yeah, all the time. People used to call me that in school."

Me: "How did it make you feel?"
Danny: "It was painful. Finally in 7th or 8th grade dad told me to stick up for myself. So one day a kid said I was retarded and punched me in the stomach, so I punched him back. I was suspended for 2 days, and it was a couple of the best days of my life! Then in high school, a kid called me retarded and I grabbed his shirt and I said "I just have a learning problem, I'm not retarded!" It got a lot better in high school. Some of the kids would stick up for me."
Side note.. my dad was a cop in Brooklyn, and a tough guy, I'm not condoning violence by any means! :)

Me: "What do you think of people saying something is "retarded" if they are talking about something being "dumb" or "stupid"?"
Danny: "It hurts my feelings and people make fun of me because I have a mental illness. I don't like the word, however it's used. It's painful to hear."

What I've learned from "the horses mouth" AKA my brother... is that yes, the word retarded is offensive to those with intellectual disabilities. I honestly feel a physical reaction in my gut when I hear this word now, just like I do when I hear the N-word or someone saying something is "Gay". I've had people say to me "geeze, pretty soon we won't be able to say ANYTHING without someone being offended!" Well I disagree, I think there are plenty of other words that can be used in place of "retarded". Like for instance, I like to use the following:

IDIOT (with forehead slap)

And I have a confession. This word has slipped out of my mouth a couple of times since Ellie was born.... I know, I felt horrible after I said it. And Jesse has said it too. But we are both trying, and that's all I'm asking our friends and family to do. Honestly, I'm writing this post because I'm driven by my fear of Ellie being called "retarded" someday. It was one of the first things Jesse and I talked about after she was born. We feel so protective over her and the thought of someone saying that to her literally feels like a knife in my heart. So please, please just think about it before you say it. That's all I'm asking. Thank you my friends.

My song for this post sums it all up pretty well. As usual, I was thinking about this topic and heard this on the radio. Love when that happens.

Tuesday, October 8, 2013

I Can Kick, Stretch, and Kick! I'm 9 Months Old!

This post is going to be all Ellie, all the time. I just wanted to post an update on how she's doing, what's been going on around here lately and of course lots and lots of pictures.

She turned 9 months old on the 4th of October. It has been the fastest yet craziest 9 months of my entire life! She had her picture in the newspaper, started saying "dada" and "hi", participated in her first Buddy Walk, punished me for going on a business trip (see videos below!) and had her 9 month check-up with her Pediatrician.

First, I have to share this funny photo of her doing toe-touches in her sleep. She loves to do this! I am thinking we have a future ballerina or gymnast on our hands! "I can kick, stretch, and kick... I'm 9 months old!" 

Doing her high kicks.
Secondly, the DSNO asked if I could send them a photo of Ellie, they wanted the one of her crying with her big brother Will.  It was going to be for an "ad" but in my mind I just figured it was some sort of internal email or something for the Down Syndrome Network. I received an email from my co-worker that said "is that Will or Luke in the picture with Ellie in the paper?!?" She emailed me a photo of the ad in the Portland Tribune. It was the cutest thing I had ever seen! I got a copy so that I could keep one for her baby book. Ugh darn it that just reminded me that I still haven't written anything in there yet. This blog will have to do!

Look at that face!

Leaving the kids for the first time during my work trip was hard because I was so worried about how they would do without me at home, and I also worried about how Jesse would handle everything by himself. Well Will and Luke did great with daddy, and they had a lot of fun "guy time". Jess was a rock star Mr. Mom, all the mom's at soccer were impressed with his skills of juggling the 3 kids at practice. I wasn't really worried about Ellie, I told myself "she's 8 months old, she won't even know I left!" Boy oh boy was I wrong. I underestimated her big time. She was so upset with me. It makes me feel like I can never leave her again! She couldn't even look at me without her bottom lip sticking out a mile. Check out the video here:

Ellie Mad at Mommy

It took her a few hours before she would smile at me again. Later that day she was jumping in her jumperoo and being her cute self, and I got her on video saying "hi", see if you can hear it! I felt like she grew up so much in the 8 days I was away! And please excuse the house, we are under construction :-/

Ellie Says Hi

Then she said "dada" on video, I couldn't believe it! Our little girl is growing up and meeting milestones. We are so proud of her.

Ellie Says Dada

Here are a few more of her milestones she's been reaching:

Holding her own bottle, she can only do it for a little bit but it's a start.
Sitting up unassisted and getting stronger every day. 
We walked in our first Buddy Walk, it was so much fun. When we arrived at the park, the first thing I noticed was "Somewhere Over the Rainbow/It's a Wonderful World" was playing over the speakers. I had instant tears (and goosebumps) as did my mom, mom-in-law and sis-in-law. This song reminds our family of mine and Jesse's wedding. If you know me, I'm always looking for "signs" and hearing this upon arrival was a good and happy one.

The date of the walk was postponed a week due to horrible Oregon rain, and the new date couldn't have been more perfect weather-wise. 10 or so of our walkers couldn't make it but we still had such a blast. I got to see a lot of my new friends from the Ds community and introduce them to our family and friends. Seeing our two worlds come together felt right, like puzzle pieces falling into place.  There was magic in the air that day, and I felt especially grateful for our support network. 

I had set a goal of $1,000 for our fund raising, thinking it was lofty, and was blown away that we ended up raising $2,900! My employer (Columbia Sportswear) matched employee's donations and it put us over the top. I was absolutely amazed by the love and support that poured out. Our hearts are so full.

Team Ells Bells!
Family picture :)

New but lifelong friends.
Famous Iris, Ellie's mentor!
Love this one of Grandma and Ellie
Ellie also had her 9 month doctor's appointment. Every time I take her in I brace myself... will there be something wrong? Why oh why do I do that to myself? The lady at the front desk gave me a "9 month milestones" questionnaire. I felt my heart sink. I wanted to say "is this for typical babies, or babies with Down syndrome?" Then I realized I was doing "it" again! Stopppp worrryyyinnnnnggg and stoppp doing THAT! I sat down and filled in the questions, and to my surprise Ellie is doing great. There weren't any questions about crawling (no she hasn't mastered that one yet!) but lots of questions about playing with her toys, saying "dada or lala" etc. And she's doing all of these things! Dr. Craft was awesome as always, he's so sweet with her and genuinely cares about her. He also told me that babies that are breech (and female) tend to have issues with hip dysplasia. She had an x-ray just to make sure all is well, and so far so good.

Those hips don't lie! :)
Oh and she continues to be a long string bean, I can't believe how tall she is. These percentiles are on the "typical" baby chart. I think she is as tall as the boys were at this age!!

Height: 29.5" (96th percentile!) 
Weight: 16lbs 6oz (10th percentile!) 
Overall doing amazing. I'm so so proud of you baby girl. Keep up the good work and happy 9 months!!!
Wearing my dad's boatin' hat!
You like my Halloween costume?
When choosing the song for this post, I asked my husband to come up with one... "what sums up this post, about life in general, and our awesome family and friends?" He wanted me to use "Family Tradition" and I thought it fit great. This is a song we put on our wedding CD that we handed out to our wedding guests (another wedding reference)! OK honey- that'll work!

Sunday, September 8, 2013

The "What If" Game

The "What If" Game. Do you ever play it? I do. As much as I try not to, I do. I tend to wonder "what if", even though I'm a true believer that life "happens the way it's meant to".

Sometimes on my drive in to work, my commute will take me up to an hour. This gives me a lot of time for my mind to wander. Too much time, really. I often play this game in my head. It's a mind bender, that's for sure. Growing up, my mom used to joke about how my dad dated Barbra Streisand. My mom used to say, "Barbra Streisand could have been your mom, I wonder what you would have looked like!" and we would all laugh. I still wonder about this story and would love to someday ask Barbra if she really dated my dad. Supposedly it was in Brooklyn, New York in the mid 1950's. Was this a tall tale, or did it really happen? My mom swears it's true, my dad did too. What if they would have stayed together? I love the mystery of it all.

My dad in Brooklyn in the 1950's
My mom and I were talking last week during my long commute into work, and she brought up how I was supposed to study art in Italy my freshman year in college. I didn't realize how pissed she was that I didn't do it. She reminded me how she begged me to go, how it was an amazing opportunity for me. I just didn't go. I totally wussed out. My mom paid the non-refundable deposit, and I boaged. I had a boyfriend at the time and didn't want to leave him. She told me again what a shame it was that I didn't go. How I could have grown, seen the world, and how opportunities like that were rare for an 18 year old. But I reminded her of something. I met Jesse that fall, 16 years ago, in a screen printing class. "What if I went to Italy, mom? Jesse and I never would have met." She agreed with me, "I didn't think of it like that! I guess you weren't meant to go to Italy!"

So young and fresh!
Since we've had Ellie this thought comes up a lot. More than it should, reallyWhat if Ellie didn't have Down syndrome? What would our life be like? I can't help it. I think it's a natural instinct to wonder. I have thought about it a lot and I've come to a conclusion and I would like to explain it here. If Ellie didn't have Down syndrome we would: go boating a ton, get an opportunity to take an "adult's only" trip to Ireland, have lots of parties at our house, go on a special family vacation where we fish every single day and drink cocktails by the sunset, go on a business trip to Asia, do a complete home remodel (including a new kitchen), have to deal with our family moving away to Vietnam for 3 years (which is devastating yet exciting all at once), decide to throw Thanksgiving at our house for the first time ever, and live life to the absolute fullest. But wait... we have done all these things. 
Boating and loving it.
Fishing off the dock
Ireland, July 2013
The cousins together for the last time, the day before the big move to Vietnam
Ellie has Down syndrome, and we have done everything we ever dreamed we would have done. I never thought this would be possible when she was born. I was so scared about the "what ifs"... but I'm finding that it's better than I could have imagined. The relationships with our friends and family has deepened. We have met families that we have a connection with that is indescribable. We never would have met them otherwise. I have met mommies online that I connect with on a level deeper than I've ever experienced. I have met mommies in real life who I already know will be lifelong friends. Our souls are connected, because of Ellie. I can be me, I can be real, and I can tell them my fears and hopes for Ellie and I am understood. I really feel that this is the way our life was meant to turn out. I am so grateful.

I leave Tuesday for a business trip to Asia. Jesse will be with all three kids by himself, and I know he will do great.  We are finishing up our remodel in the next month. We have gotten the OK from our families to throw Thanksgiving, a first for us. And it'll be both of our families combined so that'll be a first too! We have many more adventures ahead of us, and many more firsts.

So when I think about the "what if's" I will be reassured that I am exactly where I'm meant to be. I am grateful for the path my life has taken. I am excited for the challenges ahead and the joy that my three kids will bring me. I can't imagine my life any other way. I also think about that Italy trip, and how I never went. And how when Ellie was born the big talk was the "Welcome to Holland" story. About how raising a child with a disability is like thinking you are going on a magnificent trip to Italy, but instead you end up in Holland. Which is beautiful too, it's just different. Well I'm finding that having Ellie is an adventure far beyond any beautiful foreign country. And I can see us visiting Holland, Italy, Ireland and Vietnam together, as a family. Just the way we were meant to all along.

Loving the sun.
Our three.
I always like to link to a song with each post, and this time I was trying to come up with one that "fit". Well I was looking through my "shazamed" songs, and found that in the past year, I shazamed this song 4 times. Did I not realize I had already heard it before? It made me laugh that I made the effort to "tag" this song so many times without realizing I had already done it a few times before. So that is why I chose this song, because I love it, apparently!

Lost In My Mind - The Head and the Heart

Sunday, August 25, 2013

Our First Down Syndrome Event

The Down Syndrome Network of Oregon puts on a yearly event at Oaks Park for families who love someone with Down Syndrome. We haven't done anything "Down syndrome" related yet. I have met with other mama's on my own, but Jesse hasn't. I was nervous but excited and my boys were thrilled. When I told Jesse that I couldn't wait to go he hesitantly said "but aren't we already doing the Buddy Walk?" I was able to coax him into going by telling him that we will arrive late and leave early. Well guess who was the last to leave? We were just living up to our title of the "family of long goodbyes".

When we arrived, we were met by a group of families all with a common bond. The feeling of love that emanated from the group was powerful. We met children with Down syndrome that were around Ellie's age up to a senior in high school. I even had the opportunity to meet a beautiful lady who is 20 weeks pregnant with a baby girl with Down syndrome. I was so amazed by her and her husband and their courage to come out and embrace the Ds community. I overheard Jesse talking to the dad and offering his own advice. It was heart warming to hear him talk about Ellie in such a positive and uplifting way. I think we were meant to meet this couple that night. I think it was good for Jesse to be on the advice-giving end too, a new role for him.

The DSNO had a huge spread of food including desserts, drinks, t-shirts (which I wish I would have grabbed one!) and posters for us to put up at work for the Buddy Walk. There were a lot of teenage volunteers there helping all the kids as "ride buddies".  Many of these kids have a sibling with Down syndrome and were just awesome kids. It was very well organized and had such a welcoming vibe.

We spent the evening with our new friends, and mostly with my self-proclaimed new BFF (famous Iris's mom) see previous post about Iris, she is the coolest kid ever! Scroll to the center of that post and watch her dancing to "Thrift Shop" if you haven't yet. The boys and I have watched it at least 20 times! Will and Luke rode on as many rides as they could squeeze in with Eric their new buddy (famous Iris's big bro) and they are already planning the next time they can see Eric. I am looking forward to play dates with these moms and kids, I can already sense that lifelong friendships are being formed because of Down syndrome. I am continually telling myself I can't believe how this is all turning out. How scared I once was, and how now I can't imagine my life any other way. My heart is full.

Ellie and Iris smoochin!
Luke, Eric and Will
Speaking of the Buddy Walk and my heart being full, we have formed a team called Team Ells Bells. I am so excited to have our friends and family come out and walk with us to honor Ellie and others with Down syndrome! We are raising money for the DSNO and I had to choose a goal amount. I put $1000 down, unsure if that was too big of a goal but I thought it sounded good.  I posted Ellie's page on my Facebook and in 6 days we surpassed our goal. I am so grateful and humbled at the outpouring of love and support! I can't even explain how much this means to us. I contacted our PR group at my work and they added the DSNO to their list of charities, they will match employees donations dollar for dollar! Amazing!  Many of my co-workers, even those thousands of miles away have donated to Ellie's team. Our friends are surprising us left and right with their generous contributions. This money helps with programs, scholarships, and events like the Oaks Park family night! 

Here is Ellie's team page if you want to check it out: 

I can't wait to tell Ellie about her first Buddy Walk and how much her friends and family love her. Although, when seeing that scrunchy faced soulful grin, I think she already knows.

Love to you all.
My song choice for this post is Somewhere Over the Rainbow, What a Wonderful World by Iz. This is a song we played at our wedding and is one of my all time faves. At the Oaks Park event, the DSNO founder's daughter Megan (who is 15 and has Down syndrome and gorgeous red hair) signed the lyrics to this song as her mama sang it. I was in tears, it was beautiful and the perfect end to the evening.

Wednesday, August 14, 2013

They Are All So Happy

I have an announcement. Ellie, my sweet precious Ellie, is NOT always happy. She just isn't. In the 7 months that she's been on this earth, she has been everything. Happy, sad, frustrated, excited, curious, mad, stubborn, the list could go on. Name an emotion and she's probably experienced it. 

Pre-meltdown phase
Let the drama begin!
Will looks around like someone is going to help him!
Seriously mom, HELP ME! (says Will)
When I tell people my daughter has Down syndrome I almost always hear "oh, they are all so happy", or "they are all so sweet". I am trying to figure this phenomenon out because so far, Ellie is a lot like her big brothers. She spits up like them (rrr!), she giggles like them, she smirks like them, she cries like them. When people refer to her as "they" it feels like she's part of a whole different species, do you get what I'm saying?

There is a preconceived notion, myth, or stereotype about people with Down syndrome that "they" are always happy, or "they" are always sweet. Well Ellie wants me to tell you this.. "she" is just herself. It's just like saying "all gingers have no souls" when we know the truth, only some gingers have no souls. Hehe. 

So that is my PSA for the day. People with Down syndrome are each unique individuals just like you and I. They laugh, they cry, and sometimes, damn it, they have throw-down diva fits like it's their job!! 

My song of choice for this blog post is "You are so Beautiful" by Joe Cocker. I love this song, and it makes me think of our Ellie girl. BUT I also love that my dad once arrested Joe Cocker in Cali back in the early 70's. Famous family story right there! 

Saturday, July 20, 2013

Ellie's Big 6 Month Ds Clinic Appointment Update

Ellie had her much anticipated 6 month appointment at the Down Syndrome Clinic at OHSU - Doernbecher. It went AMAZINGLY WELL.  I am so grateful to have the Ds Clinic so close to our home. The appointment was 4 hours long and worth every minute. I was still jet lagged from coming back from Ireland the day before so my note-taking was not very good (OK I didn't take any notes!) They reassured me that they would mail me all of the recommendations from each specialist from the day (sweet!) My mom came with me and had great questions to ask, and was cracking everyone up along the way.

Show me what you got, docs! Let's do this thang!
The first person we met with was the Audiologist.  I had wondered if Ellie's hearing was OK.  She passed her newborn screening but I know that fluid can easily build up in her ears so I was anxious to know how she was doing.  She passed the hearing tests with flying colors, and it's recommended to have her hearing checked every 6 months.  I will be able to do this through Willamette ESD. The Audiologist was so nice and personable.  She even knew one of the Audiologists from Willamette ESD so I was given inside scoop on who to ask for when Ellie turns 1. She also mentioned that if Ellie gets sick with a cold or ear infection that the fluid can quickly build up, so to keep an eye on it and retest if necessary.

The next person we met with was the Speech-Language Pathologist.  She had some great pointers on engaging Ellie with mimicking sounds and facial expressions, and even having her copy us with sticking our tongues out. Jesse and Ellie do this ALL THE TIME and we always tell him to quit teaching her that- knowing that tongue thrust is already an issue we will face in the coming years. Well we were schooled on that, because the gal giving us all the tips reassured us that all babies stick their tongues out!!  She explained that when Ellie is bigger, we will work with her on keeping her mouth closed. If she keeps her mouth closed, her tongue can't stick out. Point was well taken (oops) and I told Jess he was right all along! 

Daddy, they told mom that our tongue game is totally fine, mommy is so neurotic!
The next person we met with was Dr. Pinter.  Talk about an awesome doctor! I was so encouraged and uplifted after meeting with him. He has such a positive view of Down syndrome and you can tell he genuinely loves his patients. He is a Pediatric Neurologist and is very brilliant. I was able to review Ellie's brain MRI with him. I wish I could have gotten a picture, it was wild seeing into my daughter's "normal" brain! I even saw her baby teeth and they looked cute already :)  Dr. Pinter was thorough and answered all of my questions before I even pulled out my giant list. I've been working on that list for the past 6 months! He was down to earth and I felt comfortable to ask him anything. I am so lucky to have him on Ellie's team. He told me more than once how beautiful Ellie was. He gave me links to some local kids/adults with Down syndrome's YouTube videos. One that really stuck out to me was of a little local girl with Ds dancing at her school talent show. Her name is Iris, she is the CUTEST LITTLE GIRL EVER! After some digging (OK, Facebook stalking) I found her mama. She gave me permission to post the video of her.  She is a 2nd grader and has some awesome moves.  Here's the link:

Iris - "Thrift Shop"

And in the usual Down syndrome "club" fashion, as I was writing back and forth to her mom I realized that the video Ellie was in called "I CAN" also had Iris in it! Iris was one of the kids that we noticed because she was so stinking adorable and her brother had a mo-hawk just like Will. We all thought those two reminded us of Will and Ellie someday. What a small world! I really am looking forward to meeting Iris and her mom soon. 

Dr. Pinter also provided a very easy to read guide for new and expectant parents from the The National Down Syndrome Society called  "A Promising Future Together".  I left my appointment with him with a list of what we talked about and list of Down Syndrome Health Care Guidelines Record Sheet. It lists everything to watch for over the next 12 years and is easy to follow. I felt much less overwhelmed by the medical "stuff" after meeting with him.

Lastly we met with Occupational Therapy and Physical Therapy.  There were four ladies and they sat around Ellie on a play mat. They gave me great ideas on keeping her arms forward (she likes to pull them back) and were encouraging about how she was doing so far. She was loving the attention, it was so cute! Our next milestone is getting her to sit unsupported and to start working on crawling.  She is also starting to lean to the left so we are also working on that so she doesn't develop torticollis. 

Oh, a quick update on Ellie's stats (this is her virtual baby book so I need to make sure to write this down!)  
Height: 27" (80th percentile)
Weight: 14lbs 9oz (70th percentile)
Dr. Pinter said she is "long and lean" and is happy with her growth.  The percentiles are based on the Down syndrome growth chart. 

Other miscellaneous things I learned: the jumperoo is fine in moderation (I had read it was bad for baby's hips), the bumbo baby chair should also be used in moderation as it can attribute to poor posture due to the shape of the seat, thyroid issues in babies (with or without Ds) can cause cognitive delays so it's important to have the thyroid checked, and brushfield spots do NOT cause issues with sight (heard this myth too!)

I love this thing!
Overall, I would say that the Ds Clinic is well worth it. It reconfirmed everything I have read and researched so far. I also was able to ask about the spendy supplements that I keep hearing about. It was bugging me that we weren't doing it because I've read a few testimonials on how it's a "miracle".  After speaking with Dr. Pinter I feel confident that it's not worth the $300 a month for us to do them (can't afford that anyhow.) I am going to keep taking my vitamins and supplements that she gets through my milk, as well as give her vitamin D drops. I'm finding with Ellie's care, listening to the doctors but also listening to my mama gut instinct is VERY important. Everyone at the Ds Clinic loved Ellie and she was so cute showing off her skills. I look forward to our next appointment when she's 1! 

I always end each post with a song, and this time I couldn't come up with one. I asked Jess and the boys what song they thought would work. Luke wanted me to post Beyonce's "Single Ladies" but it didn't quite fit (lol) and Jesse started singing "Haaaallelujah.. Haaaaalelluuujah... Hallelujah, Hallelujah, Halleeelllluuujaaaahh!" because we were so relieved to hear how well Ellie was doing. It made me think of this song, which I love, and it doesn't really go with this post but I'm adding it anyways.

Hallelujah - Rufus Wainwright

It was a fun day mom, I got lots of attention!