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!

So How's She Doing? An 18 Month Ellie Update

Our girl is 18 months old! Where has the time gone?? It's been a crazy few months around here. Ellie is learning something new every day and is still amazing us every step of the way. I also have to mention that she is so much fun, so easy going, and has developed a hilarious personality. She is also as sassy as can be. We are having so much fun with her and she's definitely our "go with the flow" kid. 

This post will mostly be a pictorial recap but will include info on how she's doing with milestones, as well as some of the fun things that have happened since March.

In June we went on a weekend getaway with our besties and it was a blast. There were 6 adults and 7 kids. We spent our days swimming and relaxing, but Ellie was sick with croup followed up with an ear infection backer, poor baby. She is a really healthy girl except for that darn croup. I think she's had it 4 or 5 times already.

At the doctor's office- what a faker!

Croup... there it is....

Mom I just am not feeling like my smiley self...

All the kids together, looking so grown up.

We also went to the beach in June with my side of the family. We had two special guests, my niece Chelsea from California and my niece Presley from Texas. We had so much fun and we laughed... a lot. And we also ate and ate and ate. There's nothing like my mom's cooking!

Ellie and Chelsea

Ellie and Presley

Ellie and Auntie Di Di 

The dudes.

I was able to get a new photo for my mom of all 7 of her grandbabies. It's the first photo of all of them that includes Ellie, I think it turned out cute. Sorry mom, you are seeing your Christmas gift early!


And we got a sweet one with Grandma...

We also welcomed home my sis-in-law and nieces and nephew from Vietnam. They are visiting for 7 weeks and we couldn't be more excited! We have been able to spend some good quality time with them the past couple of weeks. It's so heartwarming to see the cousins together again, there's been a lot of hugs and snuggles.

10 months in the making!

Last time Ellie saw her cousins she was only 9 months old!

We also had our annual 4th of July party that keeps getting bigger by the year. We had about 120 people I think, and roughly 20 people stayed overnight and camped. It was a blast!

Being sassy as usual

Ellie and her beautiful friend Amora

The morning after...

We've also been going boating quite a bit, Ellie already loves the water. I can't wait to get her into swimming lessons! This is the favorite part of our summer and the weather has been beautiful.

Yes that's famous Iris! These two...

Some other fun stuff that has happened:

Ellie's story was posted on the IDSC Site-

The IDSC - Meet Ellie

And one of my blog posts (I Have One Too) was in an online publication called Special Miracles. Below is a photo of the magazine, it's so cool! I had to order a copy to save for Ellie when she's older.

Oh! And the book that my amazing friends Jen Jacob and Joelle Kelly put together has been published and is available on Amazon- {Unexpected} Jess and I bought our very own copy! Ellie's story is in the "Unique Diagnosis" section. You can read the stories online as well: Unexpected - Stories of a Down Syndrome Diagnosis

The same blog post was republished on a site called The Mighty. I feel very blessed that it was shared. Here's that inspirational site:

The Mighty - I Have One Too

We also had Ellie's 18 month well baby check-up. Her doctor was so pleased with her progress! And I have to say, I absolutely love her Pediatrician. He is so good to Ellie and is SO, so so patient with me and all of my neurotic requests, emails, and phone calls. He always listens to me and supports me in what we are doing with Ellie in regards to vitamins, therapies, etc. I feel lucky he's on our team! 

Her stats below are based off a typical baby growth chart:

Height: 32" (57%)
Weight: 21lbs 11oz (12%)

She's still a long string bean and her doc is happy with how she's doing although she is pretty tiny weight-wise. She has fallen quite a bit in height, she was 80% at 15 months.

I have requested a sleep study because I've read that our kids are prone to sleep apnea. I'm not sure when that will be but I have a feeling tonsil and adenoid surgery will be in our future. Luckily many of the rockin' moms in my group have already been through this with their kids so I know what to expect. 

Quite often I'm asked what supplements or vitamins I am giving our girl. This part of being a mama of a child with Down syndrome is a constant struggle... it's a doozy if you ask me. There is way too much info out there. At times I want to just throw in the towel and do nothing, but something in the back of my mind tells me to "try it". I don't know if what we are doing is the right thing, so I rely heavily on my gut instinct and I read... a lot. And I stalk people on Facebook and ask them a million questions. Ohhhh the people I stalk on Facebook! I truly feel like every child is different, and this is what is working for us right now. Mom's of typical kids probably think I'm crazy for giving Ellie all of these supplements. Mom's of kids with Ds are most likely thinking the same thing or may wonder why I'm missing x,y,z! Please feel free to ask me anything, or school me on something you think is important. I'm always open to learning more!

Here is the ever-growing and evolving list:

• DHA with D3- Supports brain health, and we live in Oregon so vitamin D is important!
• Raw Probiotic- Gut health
• Nutrivene (reduced dose)- A multivitamin that is specially formulated for those with Down syndrome. I give Ellie less than the recommended dose because I feel that is the best for her, so my supply has lasted a long time!
• Choline- For cognitive function- she has been on choline since around 1 year old.
• Ginkgo Biloba- For memory/concentration, she only gets a sprinkle at this time.
• Acetyl L-Carntinine- Boosts physical and mental energy, helps combat low tone, she is only getting a sprinkle of this as well.

I also add a teaspoon of coconut oil to her last bottle of the day. We cut out dairy and were amazed at how Ellie's constant boogery nose went away- completely! It has helped SO much. She still gets yogurt every once in a while though. 
I sneak in Miralax to help with constipation but only when it's absolutely necessary. We try to combat this issue (a never-ending issue) with natural remedies like prunes, prune juice, fruiteze, etc. She also gets chia seeds when I remember. 

I requested blood tests at her 18mo appointment to check her thyroid. We are going to a naturopath named Erica Peirson once all the test results are in. Her website is here: http://www.downsyndrometreatment.net/
How lucky are we to have a doc in Portland who has a child with Down syndrome? She is a very highly regarded doctor among the online Ds community so I'm lucky to have her so close. I will post the results of that appointment after we go in August. Dr. Peirson feels that almost all children have thyroid disfunction so I'm curious to see how Ellie's numbers are!

Milestones:
Songs: Itsy Bitsy Spider, Pat-a-cake, Head, Shoulders, Knees and Toes (working on knees and toes!)
Crawling fast and furious
Standing with support
Hugging and loving on her baby, giving pats and feeding her
Signing "more", "eat", "bottle"
Saying 10-15 words: kisses, owl, what's that, up there, eyes, apple, Anna, Papa, Dada, and Ellie!
At her EI/OT/PT evaluation they said she's advanced socially. It made me laugh and I'd have to agree, she's such a HAM!

Struggles: 
Ellie is still eating most of her milk from a bottle. I am able to sneak in a cup of juice in her straw cup every now and then, but she loves her snuggles/bottle and I'm having a hard time giving it up as well! She also refuses any foods with texture. We are not eligible for Speech Therapy yet, but our new OT is giving us some great pointers. We are also learning as we go and I rely heavily on moms who have been there and done that for advice! We need to work on her feeding herself finger foods as well as chewing foods with texture.

Ellie's Gross Motor is really lacking. She cannot pull to stand, and can stand if holding onto something. She can crawl, but only army crawl. She has a hard time getting her belly off the ground. Taking her first steps is in the distant future I think. At her appointment I had to fill out an evaluation form, I call it the "Debbie Downer Form"...

Wah waaaaaah!

It's OK though, she's doing everything on Ellie time. I actually didn't feel too upset when I was checking the "not yet" box, because she is rocking it in other areas. We take our victories where we can get them! I'm so proud of how she's doing.

Below are more photos... I think I have a serious problem. I just checked and in June and July alone I took over 2500 pictures. I have a hard time picking my favorites and I have this neurotic fear that if I don't photograph it then I won't remember it! Ahhhh!

Friends trip to SunRiver...

One of my all time faves.

Selfie at Enchanted Forest

More photos from the beach:

More boating photos:

We heard this song while we were out on the boat, and I'm always paying attention to lyrics because I'm weird like that, so I thought it fit this post perfectly. Plus it's Will's most favorite singer of all time! Thanks so much for checking in on our girl. xoxo

Feel That Again - Jason Aldean