Tuesday, July 22, 2014

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!

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!


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


  1. Wow! Summer is only half over and you have done so much! I love that you aren't getting down about "not yet" it means just what it means! She will get there, all in good Ellie time! Rock on sweet girl.

    1. Thank you Mary Gene you are such a sweetheart!!! xoxo

  2. Your Daughter is beautiful. I somehow ran across your blog and I enjoyed reading it. I have a son with DS, I think these special children are so wonderful.