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

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!