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

I'm a Third Generation Special Needs Mom

I've been thinking a lot about this whole "special needs parenting" business lately. I've had friends say to Jesse and I that they don't think they could do what we do. I catch the tilted head smiles of mom's at the grocery store, behind those compassionate eyes I can feel them saying "I'm so glad it's you and not me." But you know what? We love our kids unconditionally just like every other parent out there. We aren't doing anything extraordinary. 

I'll never forget the day it happened. A friend had sent me a Huffington Post article called 7 Things You Don't Know About a Special Needs Parent. It talks about how we feel tired, alone, scared, and a number of other things. As I clicked on the link and started to read I related to some but not all of the points. Then I thought, "wait a second... I'm a special needs parent!?" Ellie was already a couple months old and I never made the connection. But then I realized something pretty amazing. I had just joined the ranks of two other pioneer women in my family. My mom and my Grandma Hattie were also special needs mamas. And they were damn good at it.

I would like to tell you a little bit about my awesome Uncle David. He was born in 1947 and was the baby of his family, with two big sisters and 3 big brothers. He was an absolutely gorgeous boy. Our Luke inherited his beautiful brown eyes.

Uncle David

Without going into too much detail I would like to share the story of what happened to my uncle. It was Christmas in 1953, David was 6 years old. He asked his parents for a new bike for Christmas. They lived in the hills of Oakland, and didn't feel comfortable buying him a bike just yet, "maybe when you are a little older" they told him.

My Grandparents

My mom said that every birthday she and her siblings would receive $5 as their gift. David's 7th birthday came along in April and he was determined to have that bike. He went over to the neighbor boy's house and bought his bike for $5. What David didn't know was that the bike had no chain. As he coasted down the hill, his attempt to stop the bike was unsuccessful. He was hit by a car, and his head was ran over. David's life, my mom's life, my aunt and uncle's lives, and my Grandma and Grandpa's life was forever changed in that instant.

My son Will is 7. I can't help but think of my Grandma and Grandpa and envision the gut wrenching pain of almost losing your child, then to have to come to terms with the fact that your child will never be the same. It's something no parent should ever have to face. My Grandpa passed away from cancer when David was 12, so my Grandma raised him alone from then on. I never sensed an ounce of bitterness or anger from my Grandma. She was an amazing and strong woman in my eyes.

Me and my Grandma Hattie, I was probably Ellie's age here.

David and his dad.

David grew to be a gentle and loving man. He had a huge heart and loved animals, movies, and his great nephews Will and Luke. He had a laugh that was booming and it always put a smile on your face. He was tall, at 6'6" with a signature walk. He was known around his town of Yamhill. At first people would shy away from David, with his loud voice and awkward gait. But after living in Yamhill for a couple of years the people in town grew to know and love him. He lived with my Grandma until her death in 1996, and stayed in that same house until his death in 2010. We loved our Uncle David, and I miss him so much.

Mom and her little brother

David and his Great Nephew Will

My brother Danny was born in 1965. When he was 6 weeks old he had surgery on a hernia that was coming out of his belly button. My mom thinks that he was under the anesthesia too long, because when he returned home he was a different baby. He was slower, lethargic, he had changed. 

At age four he had a horrible bout of chickenpox. The spots were all over his body, inside his mouth and appeared to go down his throat. At one point he stopped breathing and turned blue. My dad had to perform CPR and was able to bring him back to life. It's unknown if the anesthesia caused my brother's delays, or if it was the lack of oxygen to his brain when he was four. My parents were never able to get a solid reason from the doctors.

Mom and Danny

It is so interesting talking to my mom about my brother, or her brother David. My mom dealt with the school systems, fought for Danny's education, promoted love and inclusion and acceptance. I never really paid attention to it though, it was just threaded into my existence. I have never felt burdened by him, ever. My brother is my brother. He is awesome, funny, lovable, and an awesome uncle to our kids. Now at age 49 he is crazy busy with church, President of a non-profit group for people with intellectual disabilities, volunteers, has tons of friends, and is an all around busy dude. He also lives on his own and is doing great, he's a role model for his niece Ellie that's for sure. His 50th birthday is coming up in April next year and you better believe it's going to be one epic party! 

I was born into this family, with my Uncle David (who we called "UD") and brother Danny as an integral part of who our family was. So I think when Ellie was born I had the moments of panic and fear of the unknown, but the fear was dulled. I knew we would be OK. I love my daughter with my whole heart and I am going to fight for her, and my boys. Just as my mom and Grandma fought for their kids, all of them. 

Danny and Uncle Dave

I guess the point I'm trying to make is that there are no guarantees in life. We don't know what the future holds for our children. We love them, guide them and help them spread their wings. I'm so grateful to follow in the footsteps of these two women who have helped to shape who I am as a mother. I can only hope to do as good of a job as they did. Special needs or not, I think every mother does their absolute best for their children. There's nothing special about it, it's just what we do.

This week's song came to me today as I was cleaning up the house and trying to decide if I wanted to post this or not. I have a lot of blog posts just sitting in there in "draft" form, because I don't have enough courage to post them. These lyrics spoke to me:

My beloved one

My beloved one

My beloved one

You were meant for me
I believe you were sent to me

From a dream straight into my arms

Ben Harper - Beloved One (Acoustic)

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

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