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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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

Giving glory

Today we went to church. Although we are Christians, we don’t go to church regularly. I’ve always wanted to but never found a church that “fit”. The larger churches seem intimidating and the small churches seemed exclusive. Where we went today is a smaller church in the Snoqualmie Valley, called Valley Christian Assembly. We’ve been a few times to this particular church in the last year. My mom, who is now retired, used to work with one of the members of the church, Michael. He asked his church family to pray for our family throughout my pregnancy, Eli’s birth, heart surgery, seizures, skull surgery and various other hospitalizations and illnesses. Each time we’ve been, people tell us how much Eli’s story has touched them. Complete strangers come up to us and tell us how they’ve prayed for our family. It’s actually quite amazing. One gal refers to Eli as “Our boy”, as in the church’s. When they say church family they aren’t kidding. These kind people have embraced our family as their own. How wonderful to feel a part of something so connected.

Today, Pastor Rick asked everyone to take a few minutes to reflect on the past year. To give glory to God for all of it. Surprisingly to me, as I stood there holding Eli and reflecting on all of the hardships he’s been through this year, I had tears falling down my cheeks. I wasn’t crying because I was sad though. I was overwhelmed with gratitude to God for getting my family, and Eli, through it all. He never let us down. He never left our side. I won’t lie, there were days that I would question Him as to why this was happening to us, to Eli, but my faith always brought me back to trusting Him. I have grown so much in my faith this past year and a half. That is one of the many things I am so very thankful for. As well as those wonderful people in a church 45 minutes from our house. I am so thankful for every single one of them. For praying for Eli and our family. For welcoming us with open arms. For having a hand in the strengthening of our faith. God leads us to people, for one reason or another, and this past year He’s led us to a congregation that we are happy to be a small part of.

**Cute story: During the worship service, when Pastor Rick was speaking, Eli kept doing the sign for more. Apparently Eli really likes the Pastor and his teachings as well!

Trying to stay grateful while trying to stop the seizures (day 12)

I was going to write an update on Eli yesterday but in light of what happened in Boston, it didn’t feel right. What a sad day – for Bostonians, for the country, for human kind. I adore Boston. It’s one of my favorite cities. I like the Boston Red Sox and I love the Boston Celtics. Most of my family is from, and many still live in, New England. I find it heartbreaking that an event that brings together people from all around the world, was shattered by such insanity. My heart goes out to those that lost a loved one. My prayers go out to all the victims of another senseless act of violence.

As far as Eli and his seizures, things seem to be staying the same. We are on day 12. By now, they should be gone – at least that was the impression I was given. Yesterday, although he was still having seizures, they did seem smaller. Instead of 20-40 spasms in a cluster he had 2 or 3. It was very promising. And then he had one with 25. But, it was still better than the day before. That’s all we’re looking for – progress. Today he woke up and right away had a seizure. Then he had one before his injection and again in the parking lot at the pediatrician’s office, then when we got home, then again after lunch, and again while he lays in my arms while I type this on my phone – most with 20+ spams. So, today we’re right back to where we were. So frustrating!

I did speak with the neurologist yesterday. I expressed my concerns about the ACTH not working, even at the increased dose. His thought is, let’s give Eli “the benefit of the doubt”. He stated that it is very “atypical” for a child with Down syndrome not to respond favorably to ACTH when treating Infantile Spasms. I get it. He finds it hard to believe that Eli will be the one that it doesn’t work on. I should have reminded him though – our Eli is anything but typical. He does things his way, in his time. I’m certainly willing to keep trying it. I’d hate to give up when we already have so much invested. But I also don’t want to miss out on the opportunity to try something else. Time is the enemy. We are dealing with a “catastrophic” seizure disorder. The damage Infantile Spasms does to the brain sometimes cannot be reversed – or it could take years to ‘fix’. That is a scary realization. He’s already experiencing the nasty side effects of the drug (weight gain, irritability, no ‘personality’). I’ve only seen him smile once since getting into the thick of this treatment. That is the hardest part of this process. I miss my baby. I miss his smiles and his laugh. I miss his sweet personality. I miss looking into his eyes and seeing a brightness. Now he just seems ‘distant’. He tires very easily so we don’t get to play much. But, I do get more snuggle time because he always wants to be held.

Please continue praying. Each day I wake up and pray that today will be the day the seizures stop. Each time I give him an injection I say a prayer that it will work and doesn’t just end up doing more harm than good. Each night I pray for a better day. And I also pray for all of you. Every single one of you that prays for, thinks about, asks about Eli. Each one that has offered dinners for us, or to go shopping for us, or to just be there for us. Most people don’t understand what it’s like to have a sick child. They don’t get the strain it can put on a family. I won’t lie, it’s rough. I considered our family to be strong. Heck, we’ve been through a lot already but always weathered the storm. This storm is more like a hurricane. We’re staying afloat, but sometimes it feels like it’s just barely.

But, today I still woke up grateful. My children are alive. I am able to hug them and kiss them and hold them. Some families no longer can. I will never take a day for granted – good or bad.
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Reflect upon your present blessings, of which every man has plenty; not on your past misfortunes of which all men have some.
– Charles Dickens

Stopping the seizures – Day 8

Well today is day 8 on this hellish journey. I hate to start off that way but I’m not the sugar coating it type. Eli is still having seizures. Yesterday the neurologist doubled his dosage of ACTH since he hasn’t shown any improvements. Now he’s getting 0.6ml of the “liquid gold” injection daily. The good news is: I am getting better at giving the shot. I am still nervous but my confidence is increasing. The bad news is: Eli had more seizures today than any day prior. I just don’t get it! I was told “Kids with Down syndrome respond so well to treatment” and “Most kids stopped having seizures after the first few injections”. So why does my kid not respond to this treatment? Is there another cause of the Infantile Spasms? Because Eli has Down syndrome, the neurologists just assume that’s the cause. Infantile Spasms are most likely caused by one of the following:
•Central nervous system infection (for example, meningitis, encephalitis)
•Abnormal brain development or injury
•Neurological disorders with skin lesions (for example, tuberous sclerosis, neurofibromatosis)
•Genetic abnormalities (for example, Down syndrome, Miller-Dieker syndrome)
•Metabolic disorders (for example, mitochondrial diseases, phenylketonuria, hypoglycemia)
(www.infantilespasmscenter.org)

Is it possible that Eli could have something else going on and Down syndrome is actually a non-factor? Yes, it’s possible but definitely less likely. We pray that there is nothing more sinister happening with him to be the cause of the Infantile Spasms. His neurologist explained that it sometimes takes longer to figure out the right combination of drug therapies to stop the seizures. We will try the higher dosage of ACTH for 2 weeks. If that doesn’t work then we go to plan B (I have no clue what that is since I was certain plan A would work!).

The roller coaster of emotion is taking a toll on us. Each day we wake up wondering if today is the day the seizures will stop. We wait with baited breath until he eventually has one. Then the rest of the day we feel defeated, deflated, and downright depressed. Today we passed that old church sign in the country. Yesterday, it had something about Easter on it. Today it had been changed. It said Jesus gives new life. Start yours today. I got very excited and hopeful that once again that sign was speaking to us. (Confused? I’ve written two previous posts about said sign “A sign that speaks to me…” and “Having faith”). I thought it was telling us that Eli’s new life (seizure free) would start today. But, it didn’t. Maybe this is the beginning of the drugs working. It takes time. I just pray it doesn’t take too long.

Eli’s picture on Circle 21’s Facebook page Wednesday received 8,400+ likes and comments!! That’s over 8,400 people who are praying for, said a prayer for, or are just thinking about our sweet boy. 8,400 people – How awesome is that?! That’s pretty amazing. Just like Eli.
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Finally living life

A week ago I was handing my precious son over to strangers. Strangers that I had entrusted with his life. It was the most terrifying thing I have ever had to do. What is interesting though is what happened afterwards. A calmness came over me. Yes, physically I had handed Eli over to the nurses who would care for him during surgery. But spiritually, I had handed him over to God. This blog has been a spiritual journey for me. I have felt many emotions towards God. I have questioned my faith often. Yet, when I kissed my son as he lay in the arms of a stranger last Tuesday, I was filled with nothing but faith. Pure, genuine faith. I’ve come a long way.

Eli is doing wonderfully at home. He has so much more energy now that he’s not expelling it all on just breathing. He smiles constantly and has become quite the chatterbox. He loves to play and wiggle. Tomorrow he has a follow up appointment at the cardiologist. I am expecting nothing but great news.

It is kind of surreal to be home with Eli’s heart surgery behind us. We had fully prepared to be in the hospital for 3 weeks (we were told he’d most likely be there for 2-3 weeks). Back in August, we found out Eli did have a heart defect. At first, we thought the defect was much worse (Disillusioned – August 1, 2012). Thankfully, a few days later, the defect was confirmed to just be a VSD (Great News! – August 4, 2012). Although a hole in the heart was welcome news compared to what we thought the defect was, it is still very scary to know your baby will be born with a heart that is not 100% functional. We tried to educate ourselves as much as possible about what could happen and what was likely to happen. Eli presented with heart failure within a week of birth. That was scary. Our main goal became to help him gain weight so he could be at a healthy weight to have heart surgery. When gaining weight became too challenging for him (and for us!) we knew it was time to go forward with the surgery. At that point, everyone was exhausted. We never had the opportunity to just enjoy our baby. It was all about feeding him and checking his color and noting how many breaths per minute he was breathing. When we came home from the hospital on Saturday I half expected to see the ‘It’s a Boy!’ banners. I felt like we were just bringing our son home for the first time.

Every year, we will celebrate Eli’s birthday then three months later we’ll celebrate his ‘Heart Day’. We’ll celebrate the day he entered this world and then we’ll celebrate the day he got to live in this world. Our son is truly living now. You can hear it in his joyous cooing. You see it in the vigor in which he kicks his feet. Today, I may have even heard a little giggle. All along this journey I’ve said that Eli is teaching us about living life. Finally, we get to watch him do just that.

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Post surgery update – Days 2 & 3

Eli’s doing great! He’s no longer on oxygen or air of any kind. His chest tube was removed (that looked painful!) yesterday. His IV line was removed today. The only wires he has on still are a pulse/oxygen sensor and heart rate/respiratory rate monitor! His feedings continue to go smoothly (and quickly!). In general, he’s a stud. Every nurse has fallen in love with him and each one wishes every patient was like him (except the nurse who had the pleasure of him pooping in her hand – she probably wishes that moment never happened!). We are getting ready to go on our first walk around the hospital. We may even stop by the playroom so big brother can play. The cardiologist told us we will probably be discharged tomorrow. To that, Eli gave him a big smile!

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Thank you all for your prayers. I’ve heard of classrooms praying for Eli. Churches I’ve never attended. Prayer groups, strangers, doctors, and nurses. We have been so truly blessed that our perfect little boy has been lifted up in prayer so profoundly. God bless all of you!
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A sign that speaks to me (oh, and heart surgery has been scheduled!)

I have chills. Is it crazy of me to think God is speaking to my family through a church sign?!? If you’ve read my blog from the beginning, you may remember my story about the country church sign that we passed when we found out Eli had Down syndrome. And then every subsequent appointment after that. The sign gave us comfort when we were filled with uncertainty. That blog post is titled Having Faith. Then, the day before Eli was born, the words were gone. The sign was blank. I felt God was letting us know we were ok. We no longer needed those comforting words.

Well, today my husband called me after he almost ran his car off the side of the road on his way home from work. That sign, the one that has been blank since Eli’s birth, had been changed. It now says, “God is in control. Do not fear.” I immediately started to cry. You see, just two hours prior to the phone call from Chuck, I received a phone call from the cardiac surgery scheduling department. Eli’s heart surgery has been scheduled for next Tuesday, January 22. I had spent the last two hours completely terrified. My baby has to undergo a major surgery. A surgery that will stop his heart while a Heart-Lung Machine performs the function of both for him. Although I’ve known this day was coming it doesn’t lessen the worry. Getting the call from the hospital literally made me physically sick to my stomach. On one hand, I am relieved to finally get my sick boy healed. On the other hand, I am filled with dread. I do not know how I will ever be able to hand my precious baby boy over to the surgeons. I kept playing that moment over and over again in my head. And then I prayed. I asked God that He’d give me strength. I asked Him not to take my son from me. And then my husband called. For a moment, I forgot. I forgot that God is in control. It took a sign on a back country road to remind me.

The perfect ornament for the perfect tree

Every year we buy a new ornament for our tree from the tree farm gift shop. I look for an ornament that has meaning. Something to celebrate the previous year. Today I found the most perfect ornament. An angel that had the word ascend on it. When I saw it I couldn’t believe it. Eli’s name means ascend. I wrote about it in a previous post.

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Yes, we definitely bought that ornament. Eli gives us so much to celebrate this Christmas. We are blessed by two perfect angels. I hung that on the tree amongst all the other ornaments with so much meaning. My faves are Cody’s handprint, Oliver and Mollie’s footprints, Eli and Cody’s 1st Christmas ornaments with their pictures, a few relics from my childhood, handmade ornaments from our nieces and nephews, and each ornament that honors those who now celebrate Christmas in heaven. Our tree is filled with memories – new and old. I truly love everything about Christmas. I love finding the perfect gift. I love watching Christmas movies. I love the Christmas drinks at Starbucks. I love the lights on all the houses. I especially love the lights on our house. I love searching for the perfect tree. I love what we are celebrating. I love the spirit of the holidays. As I sit here admiring the twinkling lights on our perfect tree while Eli sleeps soundly in my arms, I smile thinking about all the memories we’ll create for our boys in all the Christmases to come. It truly is the most wonderful time of the year.

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