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

10 months old!

Look who’s 10 months old already!
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I seriously cannot believe it! I guess time flies when you’re having fun – and, right now, we are having A LOT of fun. I hate to say it, but it’s almost like the calm before the storm. Eli must know he’ll be laid up for a few weeks after skull surgery – he’s trying to get everything “accomplished” by then. It’s almost like he has an internal list and he’s checking things off of it.

Sit up. ✅Check.
Crawl. ✅Check.
Stand. ✅Check.
Eat finger foods. ✅Check.
Drink from a cup. ✅Check.
Associate words with people. ✅Check.

I guess he doesn’t want to fall too far behind. He knows how hard playing “catch up” is. Both of his therapists (PT and ST) call him a rock star and are impressed that he’s on target with “typical” kids his age. Given the obstacles he’s had to overcome, he truly amazes me. I feel guilty for ever doubting, or questioning, his ability. I guess he gets the last laugh!
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Meeting milestones

Eli accomplished two major milestones over the last couple of weeks. First of all, he mastered the unsupported sit.
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He has thoroughly enjoyed seeing the world from a whole new point of view.

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Then, two days ago, while his new speech therapist was here, he crawled! He went commando style (on his belly using his legs to inch forward) after a piece of paper of all things. Who knew that’s what it would take! His determination was fierce. I was in awe. Next we will work on hands and knees crawling but I’m in no hurry. I appreciate each milestone he hits, when he hits it.

I was chatting with a mom who is new to this journey (she found out her son had Down syndrome at birth six weeks ago). I told her that one of the wonderful things about Down syndrome is that our babies stay babies just a little bit longer. I appreciate every little thing Eli does instead of just the major milestones. The other day he mimicked his daddy by raising his eyebrows back at him. Our claps and cheers would’ve suggested he did something much more impressive – but to us, it was the most amazing feat ever. We celebrate everything – so much so Cody now claps and cheers each time Eli takes a bite of food or picks up a toy. I guess mommy and daddy aren’t the only ones ridiculously proud of the youngest member of our family! Have I mentioned what an awesome big brother Cody has become?!
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I hesitate to “brag” about some of Eli’s accomplishments out of fear of hurting another parent’s feelings. It’s hard when you hear about a child accomplishing something your child has yet to do. You start to feel a tad jealous or inadequate as a parent or fearful you aren’t doing enough to help your child succeed. We’ve all been there. We’ve all thought it. None of it is true but they are rough feelings to process. Being the parent to a child with special needs takes extra time and energy. I never thought I’d have to spend 2+ hours a week with a therapist teaching my child how to sit, crawl, speak, and eat. I was enough for Cody, but Eli requires more focus. That can be daunting at times. It has been overwhelming some days. But, the look of satisfaction on Eli’s face, and the pride I felt swell up in my heart, makes every single second worth it.

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I continue to be inspired, in awe, and so very proud of both of my sons. We are truly blessed.

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Tear clean up in aisle 12

The other day I cried in the grocery store. But I wasn’t sad – I was actually very happy. I was overcome with emotion because everything was just so normal. Cody and Eli were riding in the cart together for the first time. It was so fun seeing big brother teach his little brother how to “drive” the car.

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I stepped back for a moment and just took it all in. A year ago, I couldn’t visualize what our new “normal” would be. Heck, 6 months ago I still really had no idea. Two days ago, in the middle of the grocery store, I finally caught a glimpse of it.

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We really are no different than we were before Eli came along. Eli does typical things. Things I was once so worried he wouldn’t, or couldn’t, do. He eats, he drinks from a cup, he plays, he moves all over the floor, he talks (babbles “Mama”, “Dada”, “Ba Ba”), he’s learning to sign, he smiles, he laughs, he steals the hearts of most people he encounters. Yes, another major surgery is looming on the horizon – but right now I am choosing to bask in the normalcy of life. And praying for it to stay this way for awhile.

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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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Early Intervention

Eli had his Early Intervention evaluation on Monday. The therapist agreed that he is very strong and scores right along with his typical peers. In fact, if he didn’t have Down syndrome he wouldn’t have qualified for services since right now he shows no delays. But, Down syndrome is an automatic qualifier. Babies with DS tend to start out on an even playing field with typical babies. Then, with some skills, they start to fall behind. The goal of Early Intervention is to try and keep them even, or at least close, to other children. Right now, there’s not much to look at besides the basic motor skills of a 6 week old – Can he grasp a finger? Hold up his head? Follow objects with his eyes? Yes, yes, and yes. And guess what else Eli can do? He can smile!!! A few days ago he looked right into his Daddy’s eyes and gave him the biggest smile. It was heartwarming to witness. Those two have a very special bond.

I really liked our physical therapist. I was so relieved. I’ve heard too many horror stories of bad therapists. Right away I knew we were on the same page when one of the first things she said to me was, “Eli is your child, he is NOT a diagnosis”. Thankfully she sees our baby as a person. She understands that he is not defined by Down syndrome. He will do everything at his own pace and she is excited to help us get there. At our next appointment we’ll set goals for Eli’s progress. What do I want to see him do in 6 months? I used to write goals all the time in my past life as a Director of Sales. We called them SMART goals. They had to be Specific, Measurable, Achievable, Realistic, and Trackable. When she told me to write down goals I instantly thought back to what I was taught in sales. Could I give my son realistic goals? Would they be achievable? I didn’t want to set him, or myself, up for failure. In six months I want to look back at our goals and be able to check some things off. I asked the therapist how I could make sure Eli met the goals we set for him. She answered that he’ll do things at his own pace. We will do specific exercises that will help him but we can’t guarantee that he’ll master the skill in time to ‘check it off the list’. I’ll still write SMART goals for him – we will celebrate each ‘check mark’ and focus on what still needs to be done. Each milestone will be a victory. He may have to work harder and longer to reach that milestone than typical children. That will give us even more reason to CELEBRATE! Our son is teaching us to appreciate and recognize the little things in life. Where we once celebrated and cheered when Cody walked for the first time, with Eli we’ll celebrate and cheer when he sits up or holds a rattle. Maybe we should’ve been celebrating those achievements with Cody as well. But, that seems like a lifetime ago. Back when we saw life differently. Now, we are constantly reminded to slow down and take life as it’s handed to us. That old saying, stop and smell the roses has never made more sense.

Now, we’re headed out to smell some pine as we go in search of the Harrington Christmas tree! A little later than usual but with a wild 2 year old in the house, the less time we have the tree up and decorated the less time we give him to destroy it. Ahhh – ‘Tis the season!!!

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Doctors and specialists and therapy – oh my!

Sorry that I was in such a raw state emotionally last time I posted. This is a hard road to travel – having a newborn who is “sick”, constantly waiting for the other shoe (in our case, shoes!) to drop. When I started this blog I committed to be open and honest with my emotions – good and bad. Life isn’t always rainbows and unicorns and I can’t pretend that I’m always perfectly ok with what has been blessed upon us. Please understand that I passionately love my children and when I speak of life being unfair it is not me I am sad for – it is them. I can handle anything. As a mother I just want to shield them from any unhappiness and pain that I can.

Eli did not respond to the initial Lasix dose of 0.2cc’s twice a day so now it’s been upped to 0.4cc’s twice a day. I really pray this helps him. He’s still eating like a champ but his breathing is labored. That is really the only sign that he’s in heart failure currently. Hopefully this increased dosage will help and it will buy us more time. We really want him to be bigger before handing him over for surgery. He doesn’t necessarily need to be but I’d definitely feel a little better if he was. So, our job continues to be to fatten our little guy up! Cody happily participated in feeding him last night.

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We received a referral from Eli’s pediatrician for an ENT (Ear, Nose, Throat dr.) so we’re waiting for them to call us back to schedule an appointment. I’d really like him to be seen by them before having his follow up hearing test. He’s a very snuffly boy so I’m convinced that part of his hearing issue could be contributed to his stuffiness. They told us in the NICU to not suction his nose unless absolutely necessary because it could cause damage to his very small nasal passage and nostrils. The night he failed his hearing test he sneezed and we had to suction him. He seemed to be much more aware and alert after that! Sounds far fetched but both Chuck and I noticed it. He was definitely not our same “Snuffleupagus” after getting some of that yuckiness out, that’s for sure! He seemed to actually feel better. Today, unfortunately, the stuffiness is back.

We also have an appointment scheduled for his Early Intervention evaluation. Early Intervention (EI) is a program provided by each state in the country. They offer therapy services (physical therapy, occupational therapy, and speech therapy) based on the needs of the individual child. This service is available to any child that they evaluate and deem that it is necessary. Usually, Down syndrome is an automatic “in”. Once they evaluate Eli they’ll decide what services he needs and how often. Then the therapists will come to our house for each appointment. It was very important to Chuck and I to find an in home therapy program as we feel it will be more beneficial for Eli and our family to use the tools we already have in our home. Plus, they can include Cody in the therapy process. Who better to teach Eli than his proud big brother?

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Chuck and I were just talking about the fact that our 3 week old baby (today – Happy Birthday Eli!) has more doctors in his short little life than the other three of us have combined. Crazy! Our job as his parents is to make sure he is always in the care of the best doctors. That takes a lot of work and research but our boy is most definitely worth it! I’ve heard that the first year with a child born with Down syndrome is the hardest as far as doctor visits, specialists check ups, etc. I’d say so far this is very true. In his short time at home (2 weeks) we’ve already been to 7(!!!) doctor appointments. Wow. And we’re adding in two more specialists. At least we’ve got lots of eyes keeping watch over our boy! We just want him to have the very best start at life. We want him to have the best so he can be the best.