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

Happy to be HOME!

After 6 very long days our unexpected hospital stay ended last night. The doctors, nurses, and respiratory therapists (who were amazing – I highly recommend Swedish Issaquah!) all decided that Eli could do the rest of his healing at home. Of course, they decided this at 8pm last night so we did a mad scramble to get out of there to be home in time to put Cody to bed. We didn’t tell him we were coming home (my mom knew though). We decided to FaceTime him (phone call with video) like we always did before bed to tell him good night. He told us what movie he was watching and we asked if we could watch it with him. He seemed confused until he realized we were standing right in front of him. The look on his face was priceless. Complete surprise and excitement. The first thing he said was, “Eli all better!” (he knew that was the condition to us coming home). Eli still has some recovering to do so our activities will continue to be limited until he is 100%. Have I mentioned how much I cannot wait for this cold and flu season to end?!? But thankfully we are all home – together – as a family. I think Chuck’s birthday wish came true this year!

Thank you all for your well wishes, prayers, love, and support. Thanks especially to my amazing mom (Nana). We could not have done this without her help. When I found out we had to go to the hospital she dropped everything to come over to “this side” of the mountains to care for Cody. We can never say thank you enough. We love you mom/nana!!!

Here’s a collage I put together of pictures taken during each day of our hospital stay. From the looks of it, Eli loved every minute of it!

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xoxo Love, health, and happiness!!!

Bronchlioitis is a real bummer

Well Eli’s first World Down Syndrome Day did not end how we envisioned. I took him to the pediatrician because he wasn’t eating well, had a horrendous cough, and I could hear a wheeze. From what I read online, a wheeze is never good. I was right. They tested his oxygen levels (which were low, especially when he was asleep) and tried an Albuterol treatment (to no avail). She said we needed to go right to the hospital for admission – she suspected he had RSV. A respiratory infection. Ugh.

We’ve been here for 3 days with what they have labeled Bronchiolitis, which is basically a viral infection that can be caused by a variety of different viruses. His oxygen sats keep dropping when he sleeps. We try taking him off any kind of assistance (oxygen or forced room air) and he does fine – until he falls asleep. Today they decided to do a chest X-ray to view his lungs. They also changed the way he’s getting air. They have switched him to a machine that is basically a toned down version of the CPAP. They are forcing a tiny bit of air into his lungs to help inflate them. We are really hoping this breathing treatment does the trick. We’re going on our 3rd night in the hospital. I know it could be worse but it’s just no fun. Next week is the hubby’s 40th birthday. I had a surprise party planned for him tonight (it’s no longer a surprise since I had to tell him about it yesterday after I canceled it) – total bummer. But most importantly, once again, my baby is sick and my family is separated. I am a much happier mommy with my family all together. Thankfully, Nana is taking wonderful care of Cody for us. ❤

So, here I am once again asking for prayers for our sweet boy. I know he’ll be ok and I know he’s in the best place to get better but I also know hospitals suck and we all just want to go home! Although, as usual, he’s stolen the hearts of all the nurses and doctors. I suspect they’d like him to stick around for awhile.

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Apparently, he is much happier about staying in the hospital than mommy and daddy are.