Stories From the Heart: A Mother’s Day Tribute (link to view)

Here it is – Our family’s television debut!! Eli’s story is the first one (at 1:28). Additional parts of our interview are shown throughout the program (at 31:19, 37:22, & 54:45). The whole show is heartwarming and each story tells why Seattle Children’s is so special. If you have the time, please watch the whole thing. Donations to the hospital are always accepted and greatly appreciated. You can donate here. Our family thanks you!

❤️❤️Watch Stories From the Heart: A Mother’s Day Tribute HERE❤️❤️

Also, busses have been spotted all over Western Washington with Eli’s sweet picture. We saw our first one a few days ago. It. Was. Surreal.

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I can’t say it enough – Thank you! Thank you for your continued support of our family. Thank you for loving our boys. ❤️

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Coming soon to your television screen – Eli!

Happy Spring!

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It’s been a busy month around here. Seattle Children’s has just fallen in love with our boy. They recently contacted me to ask if we’d share our story on an upcoming television special. Yes, television! I hesitated for a second. It’s scary putting ourselves, my family, out there. But if I can help the hospital that has literally saved my child’s life numerous times, I will. Plus, I love telling Eli’s story. We met the producer and interviewer a few weeks ago. We filmed at the hospital and at our house. The whole experience was surreal. We saw a commercial for the program with our son’s picture. I cried with excitement. Eli takes it all in stride.

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The show, “Stories From the Heart: A Mother’s Day Special”, airs this Saturday, May 3rd, at 8pm on KOMO Channel 4 (the Western Washington ABC affiliate). Please watch and, if you can, please donate in honor of a mother you know, love, or admire. For each donation of $10 or more, a card will be sent to the mom telling them a donation to Children’s has been made in their name. What a wonderful Mother’s Day gift! For those of you who are not local and cannot watch, a link will be provided after the broadcast. I will share that here when it becomes available.

Children’s has chosen our family as the face of their uncompensated care donation campaign. They are trying to change people’s misconceptions about who that fund helps. Most families, like us, have insurance. But, co-pays and out of pocket expenses, quickly add up when your child is sick. Many times, the parents have to take time off of work. Bills do not stop coming. You still have to pay your mortgage, electric bill, etc. The uncompensated care fund helps cover the costs of medical expenses for your child. The very last thing you want to worry about when your child is hospitalized is how you are going to pay for it. Last year, when we first applied for help, I figured we’d be denied. When I was filling Eli’s prescription for pre-surgical soap and ointment prior to his heart surgery, the pharmacy clerk told me I didn’t owe anything because we’re covered through Children’s. I was confused. I called the financial department to clarify. When the lady on the other end told me all previous bills and any future bills would be covered by the uncompensated care fund, I cried. I promised her I would one day give back any way I could.

So, this is our way of giving back. You never know if you will one day be in need of Children’s services. I never thought we would. I listened to the telethons on the radio while driving into my hotel sales job. I watched the television specials, crying along with the families as they talked about heartbreak, loss, hope, and cures. I donated each time, NEVER thinking we would one day be recipients instead of donors. Life changes. Circumstances change. It could happen to you.

In other news, Eli celebrated being one year seizure free. I am filled with such gratitude that his battle with Infantile Spasms is over. I admit, I still wince when I see any unusual movement from him, but the anxiety is dwindling. I continue to pray that he stays seizure free forever. There are so many other children that aren’t as lucky.

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He turned 18 months old (a year and a half!) a few days ago. They say time flies when you’re having fun, and lately, we’ve been having a lot of fun!

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Thank you all for supporting our family. This Saturday, we’d love if you joined us in celebrating our journey. Please watch the special and donate to Children’s if you can. Eli, Cody, and their grateful parents thank you. ❤️

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Celebrating our little superstar

Today, 3-21, is World Down Syndrome Day! Get it? People with Down syndrome have 3 copies of the 21st chromosome (instead of 2). Today was a day to spread awareness and celebrate those with that “something extra”. Two years ago, when we first found out Eli had Down syndrome, we were terrified. Our fears were based on so many unknowns. Turns out, there was NOTHING to be afraid of. Our son is amazing and smart and strong and perfectly how he was intended to be. I hope over the past year(s), he has shown you that people with Down syndrome really are more alike than different. Through Eli, I hope to spread awareness. In honor of Eli, please spread love and acceptance, today and always.

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I also wanted to share a couple of exciting things happening in Eli’s world.

A few months ago, Seattle Children’s Hospital reached out to me because they wanted to do a story on Eli. Once the PR department “met” and got to know Eli, they decided he was so cute, and his story so inspiring, they wanted to feature him (and our family) in their spring fundraising campaign. This campaign will consist of direct mailers, full page ads in various publications, ads on the side of a bus (!!), and a possible billboard. How cool is that?!?

A couple of weeks ago, we went to the hospital for a full blown photo shoot. What an experience! We were treated like real models (who, I’ve now realized, have a very tough job!). Chuck even wore make up (totally not by choice)! Not surprisingly, Eli was a happy and willing participant. They were hoping to get shots of our entire family, but Cody had different ideas. He was too busy discussing important nuisances like yellow cheese versus white cheese with anybody who would listen. He did have fun playing assistant to the photographer, for a few minutes.

Today, Chuck found one of the ads in the Puget Sound Business Journals he was delivering. He sent me this picture of the ad.

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I used to read the PSBJ when I was a sales person. Never, in a million years, did I think my child and I would one day have our picture in one. A very proud and surreal moment for this mama!

Also, in honor of World Down Syndrome Day today, Eli’s story was featured on Seattle Children’s website, Facebook page, and Twitter. You can read it here.

Here’s what they said about the story when sharing it:
While pregnant, Melanie Harrington was shocked to learn that her baby had Down syndrome. But that was not all. At less than 2 weeks old, baby Eli had signs of heart failure – a diagnoses requiring heart surgery. At a year, he needed surgery for craniosynostosis. Through all of this, Melanie went from feelings of grief to gratitude, and in honor of World Down Syndrome Day, she shares how the emotional journey enriched her life. Read and share this mother’s touching story.”

I am not trying to brag or boast. I am just so VERY PROUD of our boy (and I knew you would be too!). I was once so scared of what Down syndrome would mean in our lives. Eli has taught me that there was never anything to fear – but there is oh so much to be gained.

Happy World Down Syndrome Day!!
💙💛💙💛💙💛💙💛💙💛💙💛

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Good riddance to 2013

As I sit here reflecting on the past year, I am thankful for so much. Most importantly, the health of my children. Many people take for granted that their children will be born without any challenges. We did not. We knew Eli would have a heart defect. We knew he had Down syndrome. We did not know the other obstacles he would eventually face. Last New Year’s I was so hopeful. I was anxiously awaiting Eli’s heart surgery. I was confident that my little boy would be fixed and we could get on with things. I thought that would be it. It’s actually a little unbelievable that I truly have that much more to be thankful for this year. A healthy heart, a seizure free brain, room for that brain to grow.

It’s amazing to think about all Eli, and his little body, went through this year. First, he conquered open heart surgery. What a trooper he was. Home from the hospital after 5 days. That was our first sign of how truly strong he is. Our little fighter.

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The next setback our sweet baby encountered was when he came down with Bronchiolitis. What a long week in the hospital that was. Thankfully, his smile kept us going each day.

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I don’t think I’ve ever felt lower than when Eli had Infantile Spasms. I felt so helpless. I took a video of his seizures so that I would have something to show the neurologist. You can hear me in the background telling him it’ll be ok and that mama is going to fix this. What you can’t hear is the terror I felt. I wasn’t sure I could fix it. I was so scared to lose my baby. I watched that video the other day. It was very hard to watch. For six weeks we saw the beautiful smile of our baby fade. He didn’t laugh. He was lost to a steroid haze.

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But, that’s not who Eli is today. He’s a healthy, happy boy who’s been seizure free for 8 months now. Thank The Lord.

When he was diagnosed with Craniosynostosis it rocked me to my core. I wasn’t sure I could sit by and let my baby take on any more. Why couldn’t he just catch a break? But, once again, he sailed through surgery and proved why he is so deserving of the moniker, Super Eli. He has the strength of a superhero for sure.

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Someone recently asked me what my wish for 2014 was. I answered that easily – I want Eli, and Cody, to stay healthy. No more surprises. We are a strong family but we would like a break. 2013 has been brutal in so many ways for us. I am very ready for it to be over. It’s been hard keeping it all together. We don’t have a lot of local support, outside of a select few people. It sucks, but it is what it is. Our saying in our house is, “We’re all we got, we’re all we need!”. We are only whole when all four of us are together. I pray we have more times together than apart in 2014.

There were some really great things that happened in 2013 too. Most importantly, Eli has a fixed heart, he easily (in the grand scheme of things) overcame Infantile Spasms, and successfully made it to the “other side” of skull surgery. He is currently healthy. He has continued to amaze his therapy team and doctors. He makes us so proud with each new skill he acquires and each milestone he hits. His brother also amazes us. Cody is smart, and funny, and so observant. The other day he actually noticed that my mom had different tires on her car. He asked her “What’s up with your wheels, Nana?”. She had her regular tires switched to snow tires. Our 3 year old noticed. Unbelievable. Cody is undeniably the most energetic in our house. He keeps us all on our toes and we wouldn’t want it any other way. He gives the best hugs and kisses and my favorite thing of all is when he grabs my hand and says, “Mommy, I love you. You’re my best friend.” Granted, he has many best friends but it’s still the sweetest thing on the planet to hear him say that!

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I “met” some of the most amazing people this year. People who will be friends for a lifetime. Some are friends from the Down syndrome community. Others are people I met because they too had a child (or grandchild) with Infantile Spasms. The newest friends are other cranio moms. They have children that have been through, or are going to have, cranio surgery. All these people get it. They get me. They don’t judge or question. They understand and empathize. It’s amazing the amount of support you can receive from virtual strangers online (and a few in person!). I have found solace and gained strength from these women (and their children) on many occasions.

2013 changed me. I once was a glass half empty kind of person. Now, remarkably, I’m a glass half full kind of gal. No matter the challenges in life, I try to see the positive – most times. I remind Chuck, when he’s feeling blah, all that we truly have to be thankful for. And on my bad days, he reminds me. Thankfully, our boys keep us smiling through it all – the good and the bad. They are our lights at the end of any tunnel.

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Thank you for loving our family. Best wishes for a healthy, and happy, 2014. Bring. It. On!

xoxo Melanie

One month post op and a donation in honor of a special one year old

It’s been a month since Eli’s surgery. He’s doing great! Honestly, besides the scar across his head, you’d never know he had a major surgery so recently. He amazes me. I love this kid!

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He’s rocking that haircut and the scar!

In honor of Eli’s 1st Birthday we asked party guests to bring donations for Cranio Care Bears, an amazing organization that supplies care packages and support to families of children who are undergoing surgery. One of the founders, Shelby Davidson, sat with Chuck and I while we waited for Eli to get out of surgery. Her presence was a Godsend and I am lucky to now call her a friend. Here is Eli with the donation pile (31 pairs of pajamas, tons of baby toys, toiletries for parents, and some cute stuffed animals!).

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Today, Eli and I were honored to deliver the donated items to Shelby when we went out to dinner with her and a few of the other cranio moms and babies. Over the last year and a half, I’ve been fortunate to make so many new friends – all because of Eli! There’s the Down syndrome mommies (we call ourselves Rockin’ Moms cause our kids ROCK their extra chromosome). And the heart mommies. And the moms of children who have/had Infantile Spasms. And now the Cranio mamas. (Not to mention the therapists and doctors and nurses we’ve met and friended along this journey!). Our boy and all his extras have led us to some really great people. Friends for a lifetime who truly get it. 💛

Officially SEIZURE FREE

Eli had his follow up EEG today. His neurologist said everything looked perfect. All brain activity is normal. Woo hoo! Praise the good Lord. He will be off all medication in two weeks. There is no plans for a return visit to the neurology department unless the seizures return. Infantile Spasms can re-appear but we will remain hopeful that the seizures are a thing of the past forever…Soon to just be a distant memory. Eli is especially happy not to have to partake in any more EEG’s. He is not a fan.
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I am so thankful that this whole process was relatively easy compared to some of the horror stories I’ve heard about. Infantile Spasms are very hard to treat sometimes. We are lucky that we caught them super early, treated aggressively right away, and got the whole thing under control within 3 weeks. I give thanks to the doctors who supported us throughout this process, most notably, Eli’s pediatrician Dr. Partridge. She took me serious from the get go. I am forever grateful to have such an amazing professional support system in Eli’s corner. Go team Eli!!!

It is awesome to see him reaching so many milestones now. He rolls over from back to front and from front to back. He can sit up unassisted for a couple of seconds. He reaches up when he wants to be held. He can sit in a high chair, a Bumbo, and an activity jumper. He may be a little behind at reaching some milestones but he is catching up at record pace! He is a determined baby that is for sure. Eli also had his first taste of rice cereal on Mother’s Day. He definitely seems to enjoy it!
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Next we’ll try fun stuff like applesauce, bananas, and squash (those were Cody’s favorites)! I’m excited to have my baby back!!!

Thank you all for prayers, love, and support. This road would be a lot harder to travel without so many of you routing us on! I am so, so, so proud of our boy for getting through another challenge. He inspires us daily. As always, we are truly blessed.
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Quick update and a plethora of pictures!

Eli had his last ACTH injection yesterday! Woo hoo!!!! He has an EEG on Tuesday. Praying that the seizures are gone for good. He’s been a trooper through all of it. The appointments, the injections, the awful tasting medicines, the puffy cheeks, the insatiable appetite. He’s a rock star.
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He sat up unassisted for the first time last Wednesday. These pictures were taken after an hour of physical therapy so he’s not very happy. Daddy, Linda (his super amazing PT), and I were quite excited. Every day he amazes us.
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The beach was another truly wonderful experience. It was so nice reflecting on the past year with my baby in my arms watching his big brother and daddy play on the beach. It is exactly how I envisioned life a year ago when I fully embraced the gift of Eli and the path God had set forth for our family. Long Beach, Washington will forever be my happy place.
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Finally, Happy Mother’s Day to all the mommies out there – especially mine. You are the reason I am the mom I am. Thank you for your unwavering love, steadfast support, and constant friendship. There is nobody else in this world that I can laugh with like I laugh with you (especially at inappropriate times like the Starbucks drive thru! 😄). I love you! ❤
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Celebrating! 2 weeks seizure free, a 6 month birthday, and a 6 year wedding anniversary!

It has been two weeks since Eli’s last seizure. I am finally starting to let out the breath I’ve been holding. We started weaning him off the ACTH last Friday. His dose was drastically reduced. He was at a high dose of 0.6ml and the first stage of weaning dropped him to 0.13ml. Now he’s at 0.06ml and will go down to 0.04ml. He will be done with the weaning process next Friday. He is scheduled for a follow up EEG the following Tuesday (May 14). He never did have an EEG before starting the wean. The neurologist was confident that the EEG would look good while on the ACTH since he hadn’t had a seizure in over a week. The less EEG’s we have to do, the happier Eli will be. It’s not a fun process for him (or mommy and daddy). Thank goodness he’s a baby. This whole process would be next to impossible with our toddler.

I am also ecstatic to report that Eli’s personality is back to the happy, carefree baby he was before the seizures started. He smiles and plays and laughs and babbles. It is so wonderful to see our boy shinning brightly once again!

This past week he turned 6 months old.
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I am not sure how this has happened already. At times, it seems as though the days drag on forever (usually during a hospital stay) and other times the days, weeks, and evens months, go by at lightening speed. Crazy to think all that he’s been through in 6 short months. I’m hoping that all of the “icky stuff” (to quote my almost 3 year old) is behind us now, God willing.

Chuck and I celebrated our 6 year wedding anniversary this past weekend. Our lives are certainly different than what we had planned when we first said “I do” but I wouldn’t have it any other way. Life’s challenges seem less challenging and the triumphs are more triumphant with my best friend by my side. I love this quote (by Winnie the Pooh!) – it sums up my feelings the best: “If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you.”20130430-235622.jpg

Thank you for sharing in the love of our family, and most importantly, loving our little boy(s). ❤

One week seizure free!

Look what’s back?! His beautiful smile! 20130424-000131.jpg
Eli has been seizure free for one whole week! He’s still not the Mr. Happy Boy he usually is, but I’ll take a few smiles and the occasional giggle over irritability and crankiness any day! It’s really interesting…He’s still on the high dose of ACTH yet he’s a totally different baby now that he’s no longer having the seizures. Leads me to believe it was the seizures causing his unpleasant behavior and not the steroids – or maybe now that the steroids are actually working the negative symptoms subside some? He does still have a very “swollen” face (known as moon face) but I think his chubby cheeks are adorable! 20130424-000821.jpg
I am so thankful that the ACTH finally started to work, just when I was ready to give up. I have read so many heartbreaking stories where the search for the right medicine(s) is exhausting and never-ending. I thought that was the road we were heading down. I truly was starting to lose hope.

Eli still has to get through the weaning process so all of your continued prayers are appreciated. He’ll have another EEG at the end of this week or early next week. If the test shows normal activity has returned to the brain, we will start the wean off the ACTH. That should take about 3 weeks. I am not sure of the maintenance plan after that. Usually, children stay on an anti-seizure drug (there is a wide range of treatment protocols as to the length of time – depends on the neurologist I guess!).

Thank you to all who have kept the faith. Your love and support is invaluable. ❤20130424-002834.jpg

Good news! Stopping (stopped?) the seizures – Day 14

Today I come to you with good GREAT news. Eli has not had a seizure since Tuesday night at 10pm – exactly 48 hours ago!!! I was hesitant to share this news because I didn’t want to get your hopes up but, I am going to stay positively optimistic that we have started stopping the seizures. We are nowhere near the end – yet. He will stay on the high dose of ACTH for one more week. If he stays seizure free he will have another EEG at the end of the week or beginning of the following week. If that is clear we will begin the 3 week weaning process.

I am starting to see some of his personality return. He smiles, occasionally. He giggled once yesterday. I cried tears of joy. Even if it’s just a little glimpse, I am so happy to have my baby back. He’s a little bloated and has “moon” face (puffiness from the steroids) but he’s still the cutest boy in the world to me. ❤

Thank you, thank you, thank you for your continued prayers. They are working! It is with the outpouring of love and support we’ve received from all of you that has kept us strong. We WILL beat this!!!

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