This Is How We Do It - Down Syndrome Awareness Month

I am not sure why, but every aspect of my life is ruled by song. Today, like many many other days, I was singing Montell Jordan's "This is How We Do It". Because I can't say those words without singing them just like Montell. I wanted to share how we do Down Syndrome Awareness Month, which if you are my friend you are fully aware what Down syndrome is! So I like to call it Down Syndrome "Celebration" Month. Because I'm annoying like that, and we have a lot to celebrate.

Every year as October approaches I try to come up with fun ways to celebrate. In the past I have inundated friends and family on Facebook with various facts about Ds and too many Ellie pics. I've visited the boy's school and read books. Our favorite one to give to the class is 47 Strings. Some other great choices are The Courage to Be Kind and We'll Paint the Octopus Red. We always wear our cute advocacy shirts. There are a ton of wonderful businesses who make Down syndrome awareness shirts, I'll list a few here (please note I am not getting free stuff for saying this!) 
Reeve's Tees (Homies Shirts!)
Gabe the Babe & Co (Advocate, Educate, Celebrate Shirts, 47>46)
Littlest Warrior (Be Kind ASL Shirt, The Lucky Few)

This year I decided it would be fun to do a school visit for all three kids now that Ellie is a Husky like her big bros! And I wanted to show a video in each class instead of reading a book.

First stop was supposed to be Ellie's preschool class, but she was sick! So instead I sent in a copy of 47 Strings as well as the adorable cartoon called Everyone Counts: My Friend Isabelle which I thought helped explain Down syndrome in an easy way for 3 and 4 year olds. It's so cute! I had planned on giving out multi-colored goldfish, reiterating how the fish are all shaped the same but are all beautiful different colors. Just like us, although we are all different, we are still all the same. Those are still sitting in my kitchen, I plan on making a class visit in November.

My friend Cathleen who blogs over at Foursmalls used the concept from the One Page Profile and made an awesome info sheet about her cutie Sam for school! I loved it so much so I decided to make one for Ellie too. Her teacher will send a copy home with each child so their parents can also talk to them about Ellie. Here it is, and below I'll share the template for anyone who would like to use it! If it seems odd that I'm sharing the template, it's because the One Pager received a lot of attention and I have spent the past few months walking people through making their own. I finally figured out an easy way to share the template, as you can see below. I have also updated the One Pager post with the same, if you need a template for that for your IEP, IFSP, Transition Meetings, etc.

Here's the link to the template (save yourself a copy in order to edit, instructions below!)

DS Awareness Month Poster Template

And instructions to save your own copy:

Our first stop was Luke's 3rd Grade class with Ellie in tow. A friend of mine said "so in other words you brought her in like show and tell?" And yes, I did, and it was very impactful for the kids to meet her in person, play with her, read with her, and get to know her. I have one word for this experience... tears. I decided to let my boys choose what we would show to the class, and Luke chose the video "True Colors" by Matty B. His class had already read 47 Strings, so I started off by telling them how Matty B has a sis with Down syndrome just like Luke. Many of the kids knew of Matty B, and were excited to watch the video. Once the video stopped and I turned on the lights, over half of the class was in tears. They were so touched by the message. They ended the visit by singing "If your happy and you know it" and Ellie lead the class. I teared up too many times to count.

In Will's 5th grade class, he asked that we show the video "Just Like You". This one is a longer video but was great for this age group. I started off this presentation by explaining who I was, that it was DS Awareness Month and I introduced Ellie as Will's little sis. I let them watch the video first, and told them they could ask me anything about Down syndrome and that there were no bad questions. These kids could have asked me questions all day, and they had some great thought-provoking questions. For example, one boy asked if Ellie had a baby, if the baby would have Down syndrome. I told them it's a 50/50 chance. Another boy raised his hand and said "so if her baby has Down syndrome and it has a baby, what are it's chances of having Down syndrome?" I probably looked like a deer in the headlights, and Will's teacher joked "that would make you a great grandma!". The kids loved asking "what is a chromosome?", "what is the r-word?", "is Down syndrome contagious?". 

Last year the boys gave their friends something that reminded them of their sis, so Will chose "Extra" gum to represent the extra chromosome and Luke chose "Sweettarts" to represent Ellie. That one makes me giggle because I always say Ellie is like a Sour Patch Kid, first she's sour then she's sweet. Boy is that the truth! So this year I asked again, and they said "something sweet!!!", so we picked Hostess cupcakes and twinkies. Costco has a box of 32 for $6.99 and they are Halloween themed so the kids were totally excited! Sorry teachers.

What I have come to realize in the almost 5 years I've been Ellie's mom, is that Down syndrome is something that you don't understand until you do. Sounds silly, right? But when I first started talking to the kid's classes when Ellie was just a tiny baby, they had no idea what it meant to have Down syndrome. I'm watching first-hand as the kids are growing up, how they now "get it". I walked through that school that day and kids from other classes were yelling "hi Ellie!!" and wanting to talk to her and high five her. Down syndrome isn't scary and these kids love her for who she is. As she enters this school in the future, the kids will all know her already. They will understand why low tone makes it harder for her to hold her pencil, or talk clearly to her friends. But they will also understand that Down syndrome is a part of her and that she is awesome just the way she is.

As I was writing this post Jesse walked by and read the title and sang it just like Montell. So you guessed it, I have to add the song to this post for your listening pleasure, and sorry if it's in your head now! 

This Is How We Do It - Montell Jordan

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

What is Your Super Power? My First DS Convention

My mom, my BFF Jos and I had the wonderful opportunity to attend my first ever Down Syndrome convention, thanks to our amazing local group, the Down Syndrome Network of Oregon!!!! The National Down Syndrome Congress was holding it's 43'rd annual meeting and I have only three words to describe what it was like...

IT. WAS. AWESOME!! And the best part? The people. Let me explain.

My first goal of the weekend was get a hug and a selfie with the famous Tim Harris, owner of Tim's Place. If you haven't watched this video yet, you really should. Tim is a rock star, owns his own restaurant, started his own foundation and could literally quit his day job to be a motivational speaker. I remember shortly after Ellie was born my whole family huddled around my phone and we watched his video with tears in our eyes. Tim is a true inspiration. He was a keynote speaker Friday night (making everyone cry tears of joy, of course) and we learned so much from him. These are Tim's Tips for an Awesome Life, take note, they are really great:

1. Love people
2. Work hard
3. Believe in yourself
4. Believe in others
5. Be happy and show it
6. Use your super power

So that first evening, as we headed back to our hotel with our hearts full, we met him! My goal was accomplished- I was giddy can you tell?

I also had the absolute pleasure of meeting some of my Rockin' Moms in REAL LIFE. These gals have been there since our girl was born and I owe so much to them. We have been through thick and thin together, and I am so looking forward to meeting more of our Rockin' Moms in September at our first retreat. Here's a group picture from the dance on Saturday night, along with some of my dead relatives (orbs) haha, roll your eyes it's OK.



During the convention I sat in many sessions that were informative and eye opening. I learned about apps that are helpful as well as Speech therapy tips from Libby Kumin, who is wonderful. I already own her book and seeing her in action was awesome. She genuinely loves the kids she works with and she had some great tips for working in speech therapy tricks during everyday life.

Lastly, I have share with you about my new friend Casey. As we were waiting in between sessions, us girls decided we should sneak in a cocktail. As we sat at the bar a handsome guy with Down syndrome sat down and ordered a Bud Light. Jos immediately sparked up a conversation with him. We learned that he has a girlfriend who he is planning on proposing to, he is a proud uncle of his nieces and he was going to have a new nephew any day. Jos asked him to describe what a typical night would be like after he's married. He said he would come in and ask his wife to get him a beer. We all giggled but then he started talking about dinnertime. He said he would turn the music on while they made dinner, and twirl his wife in the kitchen, just like his dad did to his mom. Jos and I lost it and had huge tears in our eyes. So then we asked him for a picture and were laughing at how his debit card, Bud Light and his shirt all matched!

I ended up finding Casey's mom on Facebook and had to share the story of how he was the highlight of our whole trip. She is an awesome lady! And now I'm friends with Casey on Facebook too! Casey's mom has a company called Wordy Worm Reading. With our girl being such a book lover I am looking forward to learning more about this program! It's amazing to me how life connects us to others, I truly believe all of us were meant to skip our 3:30 session that day! 

Being in a place with hundreds of people with Down syndrome was unlike anything I have ever experienced. It was inspiring, exciting, and gave me hope.I am so grateful to the DSNO for the scholarship to attend this year. I look forward to sharing everything I learned at a mom's cocktail hour at my house! :)  I look forward to being able to attend another convention someday, Florida in 2016? We will see!

No other song could sum up last weekend like this one can, so here it is:

Happy - Pharrell Williams

Fate Smiled

Oooh, I believe, fate smiled
And destiny laughed as you came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She'll make her way...

I will never forget the day Natalie Merchant's song "Wonder" played in my kitchen. It had only been a week or so since Ellie was born when I really heard this song for the first time, with new ears. I almost fell to my knees listening to the lyrics and I truly believed that I was meant to hear that song, at that very moment. 

Today as I was brushing Ellie's hair into two little pig tails I couldn't help but think back to a little over 6 years ago. I was pregnant with Luke and it was when Jesse and I both had the dreams. The dreams about the little girl who was ours, with almond eyes and an extra chromosome. I will never forget those two pig tails and sweet smile. I can't believe that because of these dreams we made the decision to be done having children- as if to not "risk it". I had no idea of the little soul that was waiting up there for us. Waiting for that right moment to come down and be ours, to rock our world.

I am a true believer in serendipity, fate, and destiny. How could I not be? It was not a coincidence that Jesse and I both had dreams about Ellie. I look at the past two years, and the journey our life has taken. I think about the people I am meeting along the way, it doesn't feel like just any other ordinary connection. I look at my existing relationships and how they are deepening to a whole new level. There's something more to it, something extraordinary that is hard to put into words.

Today as I looked at my daughter; a sassy, opinionated, smart, beautiful 2 year old little girl, I realize she is exactly who she is meant to be. She completes our party of five and I wouldn't have it any other way. I wouldn't change her for the entire world. And I'm confident that she'll make her way.

That face!

Snuggles from her big brother Luke

But I want it now!

I had to include some drama queen photos!

Brotherly lovin'

My girl

Wonder - Natalie Merchant

The Smartest 2 Year Old Ever

It was the evening before Ellie's 2nd birthday and I was doing that "thing". The whole self-pity thing that I tell other mom's not to do. Our kids are awesome, they are on their own timeline! We can't worry about milestones! You see, Miss Ellie isn't walking yet. Just taking her to the grocery store I am asked "how old is she? is she walking yet?" Almost every single time. So I was dwelling... There's something about a big milestone like a birthday that brings all of those emotions to the forefront for me. It makes me crazy that I do the very thing I encourage others not to do.

On this day I was just wallowing in it. These emotions always sneak up on me it seems. But then our neighbor girl came over. She is 11, and she had her friend with her. She was excited to show her friend all of Ellie's cool tricks. "Watch, she can whistle!" her friend was shocked. Then she asked if she could get Ellie's favorite book, and I said "of course!" Ellie then read 6 words out of her book, she can sight read the words "eyes" and "toes" and she makes correct animal sounds when she sees the word "cat", "elephant" and "tiger", and she waves for the word "wave". Our neighbor's friend said "how does she do that!? She is the smartest 2 year old ever!!" I felt my heart swell, then I felt guilty. Ellie is not reaching milestones on time, she is even behind some of her peers with Down syndrome. But you know what? She is rocking it in her own way. We are so so proud of our girl. She continues to amaze us daily.

Ellie had her 2 year doc appt, and the same week had her 2 year check-up with the Down Syndrome Clinic at OHSU and all of the awesome staff there. We are so lucky to have such a great medical team that cares about Ellie! I highly recommend the Ds Clinic, it's a long appointment but SO worth it. She met with an audiologist, speech therapist, occupational therapist, physical therapist, and Dr. Pinter. After the appointment they send a packet of information with all of their notes and suggestions. It's so nice to have it as a baseline for Ellie and I plan on taking her there every year.

We reviewed everything we have been working on since her 18 month appt, including the introduction to her thyroid meds. I have to mention that Ellie's Ped and the Ds Clinic are not advocates for treating her thyroid based on her #'s, as they feel they are within normal range. One other point that was brought up was that if I truly felt treating thyroid was important, then I should consider a synthetic thyroid medicine. There's a fine balance in following my mama-gut and also making sure I'm doing the right things for Ellie that is safe. So with that said, they both acknowledge she is doing great and that what I am doing currently won't harm her health. So I am getting more blood work next week to make sure everything looks good and will go from there. 

Ellie has been on her thyroid meds for 4 months now. Jess and I have seen a HUGE difference in her. She had 3 teeth come in within the first week of being on the medication! I couldn't believe it. She also seemed stronger and more solid, and she is on her way to walking. I had said I would do an update on her symptoms, so here is a comparison of her initial symptoms (the reason I explored thyroid treatment) and I compared them to how she's doing now:

• She stopped growing 
• UPDATE: At her 2 year appt she has grown to 33.5" and 24 pounds since her 18 month check-up. She's in the 50% for height and a tiny nugget at 16% for weight. The docs are happy with her growth and height to weight ratio. Still a string bean but growing steadily. 





You can see the mottling on her skin here. Doesn't she look big though?

• Mottled skin 
• UPDATE: She still has slight mottling (all of my kids had this) but it's much much better. 
• Cold hands and feet 
• UPDATE: Her little hands and feet are warm now! 
• Constipation 
• UPDATE: This one is a big one for us, we have dealt with constipation since Ellie was born pretty much. She's now mostly regular. It's so nice to not worry about that anymore. Oh I bet she will love to read this when she's older...
• Tongue protrusion 
• UPDATE: Ellie still has tongue protrusion but she is better about keeping her tongue in. She also understands the concept of "tongue in" and "tongue out" so that's what we focus on now. Her OT actually noted the improvement from her first visit versus after the thyroid treatment.
• Swollen belly 
• UPDATE: Now that her poops are in check, her Buddha belly is much better. She still has a bit of a belly on her (just like her mama) :) 
• Yellowish skin 
• UPDATE: She no longer has a yellow nose, but her hands and feet have a slight yellow tinge. Upon reviewing her diet we found out that most of the foods she eats are yellow/orange. Her doc says this is most likely the culprit so I'm working on that one!
• Tiny feet! 
• UPDATE: I sure wish I measured her feet before and after the meds, but I do know that she fills out her cute shoes finally. I am sure they grew, I just can't tell you how many sizes! 
• Delayed tooth eruption (5 teeth at 20 mos) 
• UPDATE: 3 teeth came in within the first week of the medicine. She has two more molars coming in on the bottom so we are up to 8 teeth and 2 peeking through! 
• Dry skin 
• UPDATE: She gets chapped very easy on her cheeks and chin, but her dry patches on her elbows and knees have cleared up. 
• Puffy eyes 
• UPDATE: I think her eyes look less puffy, when I look back at photos and compare them to now I think this is improved. 
• Low iron levels 
• UPDATE: I'm still working on this one, I need to add iron to her supplement list and have been bad about adding yet another one. This one is my fault! 
• Low muscle tone 
• UPDATE: I definitely see a marked improvement in her tone. She feels so solid to us and strong, it's amazing! She can go from sitting to standing unassisted which is huge for her.
• Reflux (she is a spitter-upper, still!) 
• UPDATE: This is no longer an issue. Her frequent spit up is gone! 
• Delayed fontanel closure (still has a soft spot) 
• Just checked it and it's barely there, even Jess was surprised at how small it is now! 

The past few months we've had a lot of fun, super busy Christmas celebrations with our family, the kids were spoiled rotten by their Grammee, Papa, Grandma, aunts and uncles and cousins. Jess and I had a fun date night new years eve which is rare since we don't like leaving the kids on new years! We even squeezed in a quick trip to see our BFF's in Dallas and so Jess and Scott could watch the Duck game (which made us realize how stinking much we MISS them!!!) we are now counting down until they come visit us this summer!

I also went with my mom and Jos and some other neat gals to watch Famous Iris (and Jos') BIG film debut in the movie "Wild" with Reese Witherspoon. It was SO fun!! Here is a still from her big scene, I hope it's OK I post it here! It was so funny watching Jos sink in her theater seat as we all screamed LOUD during her scene!! Sorry Jos, but it was awesome and exciting to see your faces on the big screen! Wooo hooooo!

Here are a few more of our favorite pics from the past couple of months. I am focusing on Ellie pics since it's her 2 year birthday update. I seriously took too many (no surprise there) and need to sort them out and organize them!

Looking so pretty in her Christmas dress (courtesy of Grammee!)

Our handsome dudes.

Loving her new cabbage patch from Grammee and Papa

Happy 2nd bday baby girl!

A comparison from last year's 1st bday pic! Look at how big she is!

My ballerina in her dress from Uncle Matt and Auntie DiDi

My little doll

One of my all time faves of our girl

Our neighbor Kate LOVES Ellie, and Ellie loves her too

For this week's song I chose one from the movie Wild. Do you ever hear a song and it immediately takes you back? This one was almost haunting for me, as I had not heard it since my dad was alive. He used to sing and whistle it all of the time- but I didn't realize it until I was sitting in that theater hearing it again after all these years. After the movie I immediately found it online and listened to it, and sent it to all my brothers. They remembered it like I did. It's funny how a song can do that to you and can stir up so many emotions. This was a good reminder of how music has been such an important part of my life and has shaped many of my memories. 

El Condor Pasa - Simon and Garfunkel

This is the face she and her daddy do to each other, I love it!

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

A Thank You to My Brother's Teacher, 40 Years Later

We all have one. A teacher who holds a special place in our hearts, who will forever be remembered and cherished. They may have gone the extra mile, believed in you when you didn't believe in yourself, or even pushed you when you didn't think you could accomplish something. But the impact they made on your life is something you will always remember.

Mine is a woman named Mrs. West, who I am still in contact with today thanks to social media. When I was placed in her class in the 2nd grade I cried. I begged and pleaded with my mom to switch me to a different class, Mrs. West was mean and everyone knew it! My mom told me that if I still felt the same way in a month, then I could switch. Well luckily she gave me the freedom to make the choice on my own. She ended up being my most favorite teacher of all. She was my teacher in 2nd grade, 3rd grade and even for a few classes in 8th grade. That's a small town for ya! She was something special, and by the way she wasn't mean at all. Strict, yes, but she was loving, gentle, and helped instill confidence in me. She will forever be "that" teacher in my heart.

This brings me to the whole reason I'm writing this post. My brother Danny has been talking about his Head Start teacher Karen ever since I can remember. He's 13 years older than me so it seems like from my first memories as a kid I can remember him talking about this awesome teacher of his. My brother has a memory like a steel trap and can recall things that happened when he was 4 or 5 years old that blow me away. He talks about how she was encouraging, loving, and she wholeheartedly believed in him. It impacted him in a way that stayed with him, for over 40-something years to be exact!

About a year ago my brother picked up his phone and called the information line. Who knew that still existed!? He asked for Karen by name and the town she taught in, which was in California. He was connected to a lady on the phone. Danny giggles when he recalls how he said in his deep voice, "hello, this is Daniel, I am Karen's student from 1969, I was 4 and 5 years old when she was my teacher." The woman on the other end was Karen's sister-in-law, and she knew Karen would be absolutely thrilled to hear from one of her students. 

When Danny and Karen connected over the phone I wondered if she really remembered him. This was over 40 years ago, and as a special education teacher she had taught many many students in that time. Well they started talking on the phone quite frequently.  Not too long ago Danny excitedly told me that Karen was coming up to Oregon to see him, along with her brother. What? She is? I thought he was surely messing with me.

Last week I had the absolute pleasure of meeting Karen in person. She and her brother came all the way from California to see my brother. Let me say that again. They came all the way from California to see my brother, 40-something years after she had him as a student!! They stopped by my house to meet me and my kids. When I opened the door Karen proclaimed "You look JUST like your mother!" It brought a huge smile to my face. It was wonderful to hear her talk about my mom and my brother. Hearing about Danny as a little boy, just Luke's age was so neat to me.

She helped Danny pick out gifts for my kids, coloring books, crayons, pads of paper and more. The boys knew the story behind Karen so they were showing off everything they knew, writing their letters, putting together sentences, counting, you name it. They were excited to have a teacher in the house and she seemed genuinely impressed! I got to sit and chat with her about her life, how she had been a teacher in Head Start and went on to be a speech therapist. She is now retired from teaching. I loved hearing about her students with Down syndrome who she has watched grow up into independent adults. She had such uplifting and positive information to share with me. 

And as to whether she really remembered my brother? She absolutely did! She remembers details such as his favorite movie as a kid. She remembers how smart he was and how funny he was, even way back then! She cares for him so much and it shows. While visiting Danny they even had dinner at my mom's with my other brother Matt and sis-in-law Diane, then went to the casino with my other brother Kevin. She got to meet part of our big crazy family and she said it was one of her best vacations ever. She said she and her brother never stopped laughing.

Danny and Karen

Danny and Karen's brother Dave

Uncle Danny and Ellie

The whole group!

Karen, I want to thank you from the bottom of my heart. I hear a lot about how I will have to fight for Ellie once she's in school, be her advocate, and that it won't come without major challenges. I have been avoiding letting my mind go there because I know at age 3 she will be in the ECSE (Early Childhood Special Education) program and will be out of EI (Early Intervention) where we are now. I feel safe in this place and so the thought of her being in school scares me. We are only a year away! Fear was creeping into my heart, but meeting you has replaced that fear with hope. I am so grateful for teachers and human beings like you. You genuinely care for my big brother and I hope and pray that Ellie has her own Karen someday. Thank you!!

For this week's song I thought about my bro and his favorite music. He loves his Irish tunes and is so proud of his heritage. One of his most favorites (besides Wild Rover) is Danny Boy, hmm I wonder why? Here is a great version by one of Danny's favorite singers, Johnny Cash.

Danny Boy - Johnny Cash

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