Three. Tres. Ba. Trois. My Baby!

Three! What a magical but not too strange trip it has been! I can't believe our little girl is three today. It's been a while so I thought it was the perfect time for a blog update. 

I haven't been good about blogging lately and I'll try to explain why. When I started this blogging journey I saw it as a virtual baby book; a great way to keep Ellie's milestones in one place, to have a place to look back at how she's growing through pictures, and to keep friends and family updated. But in all honesty the online blogging world is tough. Her info is out there for the world to see. There's a lot of talk about sharing our children's stories, because her story is HER story, it's not my story. Is it fair to Ellie? Will she look back and want to slap me? 

So in other words, I started second guessing what I was sharing. I don't ever want to do Ellie a disservice by sharing our family's experiences. But I also still feel that sharing is important for those newly on this journey, our life is pretty normal (normal? like a setting on a washing machine?) No seriously, our life is great and we have a kid with Down syndrome.  So with that out of the way, I wanted to do a little recap of the past year now that my baby girl is three. 

2015 was SO FUN and SO BUSY. And Ellie's birthday is TODAY! 

Ellie had an epic year. I can't imagine that 2016 could top it. She was in the paper a few times, and even on the news! She was also in Times Square on the big screen, TWICE! She's reading like a champ!! She is even starting preschool in a month! I'll recap her 2015 in pictures, because that is how I roll (and I love going back and looking at them as the years quickly pass by) :)

My last post was my pissed off letter to the editor, and the one before that was the amazing Down Syndrome convention. So I'll rewind to summer. Let's start there.

Our 4th of July party was the best one ever, there were lots of people and fun was had by all.  I also got to meet my friend Jisun for the first time. We met online in the original  Rockin' Moms group. She stayed the night at our house with her family in a tent! Yes it was that kind of party! She has a blog called kimchilatkes. She is a very gifted writer, if you haven't already you really should check her out. She's also now an Oregonian, woo hooo! Ellie and Caj are so cute together. I'll talk about them more later. 

Every year our family gets together and we stay at Sun River. It is SO FUN, so relaxing, and just wonderful. Jesse's sis and family live in Vietnam so we always love to have them home. The cousins act like no time has passed. We look forward to this getaway every single year. 

Our besties from Texas came and stayed with us too, it was such a fun few weeks!! I didn't know that I wanted a Sister Wife until Kelly came and stayed with me. She would have dinner ready when I got home from work, and laundry done as well. Our house never looked so good. Kel, when are you coming back again?? Ah we love you guys so much, and miss you terribly!

We tried to get as much time on the boat as possible. Ellie LOVES it. We are looking at getting her and Luke into swim lessons before summer so they are more confident in the water. This is my favorite part of summer.

We also go on an annual beach trip with my side of the family. My brother and sis-in-law came from Texas and my niece Presley stayed for 2 weeks. It was so wonderful having them home!! The boys get along so good with their cousin Pres. The family genetics are almost creepy sometimes! They are all so much alike, and my niece is my mini-me!

We also spent a lot of time with my BFF Jos and her family. We are so lucky to have them in our lives. 

September came, and so did our annual DSNO Buddy Walk! Ellie's team raised almost 2K- we are beyond grateful. We also had our biggest group yet!

Another event in September is the National Down Syndrome Society Buddy Walk. They have a jumbo-tron in Times Square that plays a video showcasing people with Down syndrome. I've entered Ellie's picture every year since she was born. She's never made it in until this year. To me this was the "big one"... New York, baby, where my daddy was born. Oh he would've loved to have seen her in Times Square! And you know what? Somehow Ellie made it in twice this year. The paper even did a little story about it. She was in once with her buddy Caj (mentioned above) and again with her Great Grandma Margaret. Our sweet Grandma passed away in October. She got to see the photo of her and her Great Granddaughter on the big screen. She and Ellie had a special bond that's for sure. We sure miss her.

Another fun event in September was my "Rockin' Mom" get together. My house was full of beautiful babies and big kids too. Watching the friendships develop before my eyes was too much. There's something to this little Ds family I belong to, it's hard to put into words. But what I do know is that I'm grateful for each and every one of my Rockin' Moms, near and far.

October! October is my handsome hubby's b-day, as well as Down Syndrome Awareness Month! I warned my Facebook friends that I would be annoying for the whole month of October. But what I found was that my friends are amazing. They actually shared my photos of Ellie and are spreading awareness (acceptance) too. Here are a couple of photos I shared in the month of October:

So let's talk about Ellie's modeling for a minute. This whole thing was CRAZY to Jess and I. I'll try to explain it all as quickly as possible. Ellie was signed to Puddletown Talent in March of 2015. She had her first modeling gig in August for Hooray Haroo (seriously adorable clothing, made in Portland, OR!).. the Statesman Journal did an article about her modeling job. They had told me the article would be in the Sunday paper. I had my sweet mama-in-law and brother John running around to find the paper for me, to see if she was in it! She wasn't and I figured maybe they decided not to run the story. As Jesse said "it was only one ad she was in- what's the big deal?!"

The next morning I woke up early and was waiting for my coffee to brew. I jumped on Facebook to check in on my friends. My friend Lisa (in TEXAS) yes we love our Texas peeps... messaged me saying that she saw Ellie on her news-feed in USA Today. Wait, WHAT!?!?! I'm pretty sure I ran in and woke Jesse up to tell him. 

I went in to work like any other day, and around 9am my mama-in-law sent me a picture, our girl on the cover of the Statesman Journal. Then around 10am Ellie's agent (that feels so funny to say) texted me and said that Channel 8 wants to interview us. WHAT?!?!? So I called Jess and he said "Cool, you should do it." So I talked to my boss, took PTO, and rushed home. I had no time to clean my house. My amazing mama-in-law came over to help me hide clutter and fake like my house was clean. It went really good and Ellie was a total ham for the camera. So then The Mighty posted an article about Ellie. Then I got a call from a sweet reporter from Upworthy. She loved Ellie's story and wanted to do an article. She said "we only have 8 million followers on Facebook" Oh my gosh! I couldn't believe all of this was happening.

             

  

            

So since that one crazy modeling job went viral, Ellie has had two more modeling jobs. One for Fred Meyer (thank you to her stage Grammee for taking her!) and one for Matilda Jane. The Fred Meyer ad is supposed to be out in February and I'm not sure when the Matilda Jane photos will be live. It's been a whirlwind and so much fun. The best part for me is talking to other parents about Changing the Face of Beauty. It's an amazing and important campaign and is really changing the way people view those who are differently-abled. I'm so grateful. So here's my advice to parents: if your child loves the camera and is comfortable having their photo taken, get that kid an agent! Contact your local agencies with your child's photos and explain CTFOB's mission. It's really an amazing thing.

The Statesman Journal also did a follow-up on Ellie that you can read about here. It sums up all the craziness in a nice neat package, much more eloquently than I could!

An update on our girl as of today. Ellie is reading like crazy, she loves her flashcards and her books. Jesse and I did a count the other night and she has 130 sight words. It's so amazing! She is just starting to take more and more steps and we are really proud of her. She has a new Minnie Mouse backpack to start school in February! Health-wise she is doing awesome with the occasional sniffle and she seems to be growing out of her croup-there-it-is problems! She is on meds for hypothyroid and I also give her a handful of supplements (Nutrivene, zinc, folinic acid, and fish oil) which are all approved through her Pediatrician and Naturopath. We are lucky that we have Dr. Peirson local to us, she has helped Ellie SO much! She has her 3 year check-up this month at her Ped and the DS Clinic at OHSU. 

Lastly are some more recent photos from Thanksgiving and Christmas. Mostly Ellie doing her signature hard hugs that everyone looks forward to! Overall 2015 was amazing and fun and I don't know where the years have gone. Our baby is a big girl now and it happened in the blink of an eye! We love you Ellie Lehne, Happy birthday sweet pea!

For this post's song we are sharing Ellie's current favorite jam (besides Let it Go, of course)...

WTF - Missy Elliott

Don't Poke the Mama Bear - My First Letter to the Editor

Last Friday we had Ellie's planning meeting with her whole team; Early Intervention, Physical Therapy, Occupational Therapy and Speech Therapy. We were discussing what will happen when Ellie turns three in January. Thinking of school, learning, bus rides, and making friends makes me sweat and want to stress eat. I went into the meeting feeling nervous and unsure, but by the end of it we had a wonderful plan in place for Ellie and I felt lighter, hopeful even. The positive feedback I received about how she's doing was so reassuring. Her team believes in her and they truly think she will to rock it when it's time to go to school! WHEW!

But this leads me to a letter to the editor that I read the week before Ellie's big meeting. My good friend and fellow Rockin' Mom Jenny shared it with me. Jenny lives in Pennsylvania and this article was published in Grants Pass, Oregon. The post was titled “Special needs kids don't need to be in classroom” and it was written by a woman named Betty. I doubt Betty expected her letter to go viral, but it did. Below you can see the newspaper clipping for yourself, please read it and let it soak in for a minute.

"Ride the small buses?" As you can imagine, I was disturbed by Betty’s letter. Actually disturbed isn’t the right word, I was just plain pissed. Just when I feel like we are getting somewhere with inclusion and acceptance, something like this has to come along and punch me in the gut. I decided to contact the editor of the Grants Pass paper with my rebuttal. My fingers were typing faster than my brain could even work and I quickly sent off an email to him. Soon after I received a reply stating that their letters have a 250 word limit, and my letter was 483 words. Oops. The editor said he would like to share my opinion but I would need to refine my letter, which I did.

I also explained to him that I thought Betty’s letter should not have been published in the first place. I think it's discriminatory. He confirmed that he agreed that it showed this woman’s ignorance but that her opinion was still just that, her opinion. I strongly believe that had Betty singled out any other race or group of people that the letter would not have been published. I checked in on the paper's Facebook page and found that the visitor posts have been blocked. There were many insightful and some angry posts from across the world, all aimed at Betty. I think it became too much for them to manage. I'm curious to see if the paper has any follow-up on this, such as an apology.

Below is my letter to Betty. I sure hope she had a chance to read it and that she reads the other letters that have come in. I also have to give a shout out to my friends Andrea and Lisa who found me a copy of the paper- this particular newspaper is only readable online if you have a subscription. So thank you my friends for getting it for me!

I realize this is just the beginning of the adventures and hurdles I'll face while raising Ellie. Seeing the responses from fellow Rockin' Moms and other parents of kids with special needs makes me realize how lucky we are. We are so blessed to have our kids in this generation, and not in the generations before it. I have a sneaking suspicion Betty grew up in a time when those who were different were either institutionalized or hidden away. I truly hope she has a change of heart. 

For this post's song, I chose an absolutely beautiful one by the band Gungor. If you have a child with special needs I urge you to listen to it. Michael and Lisa Gungor have a gorgeous little girl with DS named Lucette, which means "light". When I first watched the video it brought tears to my eyes and a flood of memories back to the day of Ellie's birth. The emotion in Michael and Lisa's faces is so familiar to me. I can see the fierce protective love, mixed with a fear of the unknown. After reading their blog I found out they also had a birth diagnosis. Their birth story is worth the read, and it'll surely make you cry. Ahh, it's just amazing.

And Betty, I doubt you will ever read this but I think you should listen to this song too. All children are amazing gifts who deserve only the best in life. 


And the blind gained sight
As we met our light
Oh the joy and fight
The gift of life

Your hands, the creases
Your feet, your breathing
You're mine, you're perfect light

Light - Gungor

The Best Advice I've Received

It's been two years already since we welcomed Ellie into our lives, with her little extra somethin' somethin'. And in these two years I have received some amazing advice; "be kind to yourself", "don't project into the future, enjoy each day", "milestones, schmilestones", "don't compare", "don't limit her", "admit when you need a break", and "follow your gut". The last one has proven to be an important one. But the one that has really stayed with me was given to me less than a month after Ellie was born. Let me explain how it all happened.

Somehow, the Down Syndrome Network of Oregon heard about Ellie's birth diagnosis and they wanted to give me a Basket of Hope. I had no idea what this meant, and I hesitantly agreed to meet a local mom. We chatted over email and I found out she had a son named Jacob with Down syndrome, he was 13 at the time. They planned on coming over to meet Ellie, and so I could meet Jacob.

Meeting Jacob would be the first time I had actually talked to someone with Down syndrome. I was nervous and I asked my mom come over to meet them with me. Come to find out, in a fateful sort of way, this mother lived a couple doors down in our neighborhood just a few years before! And now they live only a couple of miles away, I love when this stuff happens! She and Jacob and his older sister arrived and were so welcoming and sweet. Jacob was tall and lanky, considerate and well spoken. I'm ashamed to say it now, but upon meeting him I realized I had some serious misconceptions about what the diagnosis meant, and I had a lot to learn. He was so sweet with Ellie. He held her carefully and he brought tears to our eyes when he said quietly "you're like me". 

Jacob's mom was laid back and easy to talk to. I felt like I had known her my whole life. She asked me what we liked to do for fun, and I told her our favorite things were entertaining and going boating. This was when she said "so, you like to throw parties? Keep doing it. You like to go boating? Keep going boating." It was as simple as that. It was a defining moment for me. It's hard for me to explain but I felt lighter, like a weight had lifted off of my shoulders. I kept thinking our lives were forever changed when we found out about Ellie's Down syndrome. She went on to explain how therapy is important, but to not let it rule your life. Real life, Ellie being home with her brothers, going on the boat, spending time with family and friends doing regular things is just as important as therapy. 

Since meeting her that day I think about her words often. I get caught up (a lot) in wondering if I'm doing the right things. The list of therapies available is as long as my arm, and the list of vitamins and supplements she could be taking is huge. She doesn't just get a gummy vitamin like her bros, I'll admit that, but I really have to take a step back quite a bit to make sure I'm not spinning out of control with the research. We have a smart happy little girl who is a complete riot, who loves partying and she absolutely loves boating. Our life as we know it is pretty dang good, and I'm so glad I had this seasoned mom to remind me that things only would change for us if I let them.

Next weekend I get to deliver a Basket of Hope to a new local mom. I have to mention how grateful I am to the Down Syndrome Network of Oregon to give me this opportunity. Receiving that basket two years ago meant the world to me. I am so giddy to be able to meet this mom and her beautiful new baby boy. We have been in touch over the last few months and I feel like I know her already. Actually, there were two new babies born in the area on the same exact day, how awesome is that!? I just have to say it, welcome to the club new mama's!

This week's song is just a random one I love, and below is a photo of our big 2 year old. I will do a 2 year Ellie update post soon. :)

Where Do the Children Play - Cat Stevens

It's Time to Try Something New

I would like to start off by explaining why I decided investigate some alternative medical treatment for Ellie. By no means am I unhappy with her Pediatrician, it's just that my instincts were telling me to dig a little deeper. Something just isn't right with her and it's time for a change. 

It started when I took her in for her 18 month appointment. Ellie had always been close to the 90% for height, and in the time between her 1 year appointment and 18 month appointment she only grew 1/4". She dropped to the 57th percentile, and it happened so fast.

I started researching, asking questions online, and paying close attention to her symptoms. I started hearing more and more about Dr. Erica Peirson. She is a Naturopath who is known across the world for her work with children who have Down syndrome. I even have friends in Australia who use her services. The amazing thing is, she's right here in Portland! How lucky are we? Anytime I hear about something more than 2 or 3 times I always take it as a sign to investigate it further. I knew it was time to set up an appointment. You can find her website here, it's full of great information:

Peirson Center for Children

Yesterday my mom and I took Ellie to see her. We were welcomed with open arms. She is absolutely awesome. She was so great with Ellie and I came prepared with a giant list of questions. She answered all of them before I even had a chance to go down my list. I used every second of our 2 hour appointment. And she is smart, I mean SMART! She knows the ins and outs of what that extra chromosome means for our children. Some of the info she explained went right over my head but one thing that was absolutely clear to me is that she is the right person to treat Ellie. 

Dr. Peirson believes many people with Down syndrome have thyroid issues. I have thyroid issues, my Grandmother had thyroid issues, so poor Ellie is stuck with my genes. Thyroid problems can be genetic. I had Ellie's blood work ran before the appointment and according to typical lab results Ellie's numbers were "within range" but with a TSH of 4.4 and some other borderline numbers, she is definitely treatable. Here are some of the symptoms I've noticed with Ellie. I'm hoping some of them are improved with thyroid medication:

• She stopped growing
• Mottled skin
• Cold hands and feet
• Constipation
• Tongue protrusion
• Swollen belly
• Yellowish skin
• Tiny feet!
• Delayed tooth eruption (5 teeth at 20 mos)
• Dry skin
• Puffy eyes
• Low iron levels
• Low muscle tone
• Reflux (she is a spitter-upper, still!)
• Family history of thyroid issues
• Delayed fontanel closure (still has a soft spot)

I reviewed our current list of supplements with Dr. Peirson and she was fine with what we were doing so far: Nutrivene at a half dose (a good multivitamin is a good idea!), Raw Probiotic, DHA with D3, Choline, Ginkgo Biloba and Acetyl L-Carntinine, these last two I'm not totally sold on yet, so I'm still only giving her a sprinkle for now.

Dr. Peirson feels it would benefit Ellie to be on a natural desiccated thyroid pill for hypothyroidism. We will be picking up her prescription today and starting her on a low dose. Additionally, Dr. Peirson felt treating her low iron was crucial and that we should add Folinic Acid, Vitamin C, and Vitamin E. I will be adding these after Ellie's thyroid #'s are looking better. We will be reevaluating her bloodwork in 4 weeks. I always slowly introduce any new vitamin or supplement to make sure there are no adverse side effects and so I can be sure each one works for her.

I will be updating this blog with the results once we've given the thyroid medication a try. Some other moms who have worked with Dr. Peirson found that their child did so much better when their thyroid was treated. One mom had marked results in 3 weeks in her son's physical development; he went from being wobbly and barely walking, to getting up and walking across the floor like a boss. His mom has video to prove it! His speech improved too. Another mom shared that her daughter grew 2" and gained 3 pounds in a little over 2 months. This is so reassuring to hear! Below is a link to the really informative article that Dr. Peirson wrote regarding Ds and Thyroid:

Thyroid Hormone Metabolism in Down Syndrome

Another really useful article I found was by Down Syndrome: A Day To Day Guide, it was the original post that opened my eyes to possible thyroid issues. I appreciate how she explains how to read thyroid results in the section titled "Confused About Lab Results?" I will post it here for reference:

Thyroid and DS Go Hand In Hand

I want to mention again how I believe every child is different. What Ellie needs isn't necessarily what the next child needs. I rely heavily on my gut instinct when it comes to giving Ellie vitamins and supplements. Some kids may not need anything, their thyroid may be fine and they may be better at eating more nutrient dense food. Ellie is still eating baby food and is so picky, so I feel good about giving her some extra help with vitamins. Also, finding a doctor who is like-minded is huge. Dr. Peirson wants our kids to be the absolute best they can be, and I am so grateful I found her. 

Ellie's team is rockin', we now have Dr. Peirson on our side (thank goodness), we have Ellie's wonderful Pediatrician Dr. Craft who is so supportive of my crazy ideas, her Early Interventionist Diana who has been a constant support and has been with us since Ellie was 6 weeks old, our PT Elizabeth who is absolutely amazing, and our new OT Susan who is coming to the plate with some really awesome tips. I truly feel like Ellie is going to shine even brighter than she already is. Oh and I can't forget to mention Dr. Pinter at OHSU's Down Syndrome Clinic. He is a rock star! I am grateful for the team we have built for our girl. Watch out world!!

UPDATE 2017: Ellie is now 4 years old. We have since taken her off supplements for now and she is only on thyroid medication. We are in the process of reviewing blood work with her team of doctors to confirm if there is anything she is lacking. She is now eating more nutrient rich foods and is gluten and dairy-free (cow's milk) and still eats cheese and yogurt sometimes. She is in preschool and will be starting pre-k at her big brother's school in the fall! 

So for this week's song I'm actually going to post a video. This video was released when Ellie was around 9 months old and it made me bawl big ole' ugly tears but they were happy tears. And now whenever I hear this song I think of this video, and of our Ellie, and how I was a cheerleader and how she could someday be one too, but only if she wants to... of course! :) 

Roar - Verrado High School

My Daughter With Down Syndrome Has Changed Me

When Ellie was born I knew my life was forever changed. I felt it, not in my heart but in the pit of my stomach. It was a fear that I would not be the same person from that day forward. A fear that my life would be filled with doctor's appointments, therapies, and research. That my duties as mother to my two older boys would be sacrificed. I worried for how my marriage would suffer because of this new journey I was about to take. I loved this tiny being with my whole soul but I worried that fighting for her would take away a part of who I was.

Those feelings in the pit of my stomach have since faded. The fear has grown into hope, and now I feel it in my heart. I now have a full, grateful, bursting with joy heart and it's hard for me to even put into words. I would like to try and share with you how Ellie has changed me. She has changed me in ways I never could have imagined.

1. Stopping to Smell the Roses. I remember wishing away the days with my oldest son Will, pushing him to get to that next milestone and stressing that he wasn't getting there fast enough. With Luke it got a little better, as my second baby I found that life was flying by faster than I expected. I wanted to soak in every phase with Luke. Ellie has helped me back up the truck, slow down, and enjoy every minute. She takes longer to accomplish her milestones and being the third child I can't tell you how much I'm enjoying this time with her. I remember feeling offended when someone said "you are lucky because you will have a baby longer", but I get that now. And to be honest at 18 months she's already moving into toddler-hood and has the sassy attitude to go with it!

2. Human Rights. I have never in my life felt so passionate before for all people; race, religion, sexual orientation or being differently abled, I will fight for the equality that every person on this earth deserves. I lived in a naive bubble before Ellie, I cared about human rights but never at this level.  I am now aware. How lucky am I to have a daughter who at 18 months old has already taught me this important life lesson.

3. Nutrition. As silly as this one sounds, I have to bring it up. I have learned so much about nutrition because of Ellie. I have learned that some children with Down syndrome do better when they are dairy free, or gluten free. These are ways of eating that I never would have explored if it weren't for her. I know more about supplementation as well and am even taking some of the vitamins myself. I am excited to learn more about healthy eating as Ellie grows up, and the rest of our family will benefit from it as well. 

4. Understanding Work/Life Balance. I am a career mom, and with being a career mom comes a lot of working mom's guilt. Once Ellie arrived and rounded out our family of five, I was able to take a step back and look at what is important. "Things" are not as important to me now. I am not feeling the constant push to rise to the top of the corporate ladder. It is an amazing feeling to get my priorities in order! If Ellie wasn't here I don't know if that would have happened. She took me down a notch and brought me back to reality. I am lucky to have an amazing boss who gets it, to work for a company that is flexible and understanding, and to have the security in knowing I'm building toward a future for my family.

5. The Importance of Connections and Support. Where would I be if it weren't for the internet? I have mentioned this before, but the connection I feel to other families who have children with Down syndrome is magical. There is no better way to put it. Having the support of other moms gives me such reassurance for Ellie's future. I have these women to lean on for the rest of my life. We will have each other's backs through it all, the hard times, the joyful times, the scream at the sky and cry times. I make new connections constantly and when you are on the journey of raising a child with Down syndrome, to know you are never alone is so comforting.

*If you are pregnant with a child with Down syndrome or have a child with Down syndrome birth to age three and you are not in a Rockin' Mom's (or Dad's) group, please go to our DSDN link and click"connect". You won't regret it, I promise!

6. Being Different Is Awesome. This to me is the most important lesson Ellie has taught me. As soon as Ellie was born we talked to the boys about Down syndrome and what it meant. Even before she was in our lives we always reiterated that "if everyone in the world was the same, what a boring place that would be!"  Because kids ask questions and they notice people who aren't like them, and even say awkward things out loud sometimes. I'll never forget the day Will asked me "mommy what is wrong with Uncle Danny?" I took a deep breath and started to try to explain his story and why he has an intellectual disability. I barely got out a "Well honey.." when Will said "He's just so shaky!" He wasn't even asking about his disability. He didn't see it at all as a matter of fact, he was noticing how my brother shakes. It brought a huge smile to my face and I was able to explain that he is shaky because of the medicine he is on. 

I hear my boys educating their friends about Down syndrome. I hear them being more accepting and loving because of their sister. Now if we are out and about and they see someone who is differently abled, they will wave and say hello. This to me is the biggest part of how Ellie has changed not only me but all of us. Our hearts are bigger because of her. I also see her changing the hearts of our friends and family.

Yes Ellie, you have sure changed your mama. And I am so glad you have. You are the little gift my soul needed. Thank you for opening my eyes to some of the biggest lessons I will ever learn in this lifetime. I am eternally grateful that you are mine. I can't wait to see what else you can teach me.

You Belong To Me - Bob Dylan