November

It’s been a minute! I thought I’d take some time to write about Dax. I hope everyone that reads this is having a wonderful holiday season so far.

We can’t believe that we have a 9 month old. October was a difficult month for our family. Dax was on some medication that took the life right out of him. We didn’t hear him coo or babble or see his little grin for almost 4 weeks. I’m so grateful that we always soak in those moments with Dax, because we knew the last time that Dax talked to us and smiled, and we had it on video. But, Dax being the strong-willed little boy that he is, he pulled through and started talking again – and he has had A LOT to say!

I’d be lying if I said that everything is just fine. Things have gotten complicated since the spasms; but we have a great team of doctors on-call. We’re focusing on staying in the moment and continuing to find silver linings. Dax has experienced every season and technically every holiday (since we celebrated Christmas in July). Dax still enjoys being outside; we went on a walk a few weeks ago and stood underneath every different colored tree so Dax could look up and see all of the different colors of Fall. I don’t think Ozzie noticed the trees, he was too busy tromping around in the leaves. Dax and Ozzie were cows for Halloween, they trick-or-treated at our next door neighbor’s (they both love going to Hershel’s house). Dax went on a ride in Dad’s truck, we’ve cheered on the Chiefs, we’ve spent some time with family, and we’ve snuggled daily. Being over my shoulder is one of Dax’s favorite places to be.

Tyson and I recently talked about gifts this year and decided on not buying each other anything for Christmas, and ironically we just got Dax’s records in the mail from his EEG in October. When we had the EEG done, I asked the tech if I could whisper in his ear and see how his brain responded. She thought it was a great idea! She took the time to highlight the section for us so we could frame it. It’s easy to get caught up in buying gifts during the holidays. Remember that time is a gift and something we aren’t entitled to. I know Dax hears us and he knows love. And seeing his response to me whispering in his ear on paper is a gift that we’ll cherish forever.

A visit to Children’s Mercy.

As mentioned before, Dax doesn’t have any coordination or control over his limbs, he has frequent little spastic motions; but he started doing a new movement a few days ago. The movements quickly transitioned to clusters – it was something we’d never seen before. We spoke to our neurologist as soon as we could and after our conversation, it was urgent to get an EEG on Dax. We were fortunate to have a room arranged for us at Children’s Mercy within a few hours of speaking with our neurologist. After an overnight EEG and video monitoring, we met with the neurology and epileptic team. It was confirmed that Dax was having epileptic spasms (also known as, infantile spasms). It’s true when they say go with your gut; we thought Dax was having infantile spasms. Tyson and I were able to recognize every episode that Dax had at home and in the hospital.

We’re choosing to share our experience to raise awareness. It’s EXTREMELY IMPORTANT to get an early diagnosis and begin treatment right away. Many babies who suffer from these spasms are not accurately diagnosed for more than a month, this delay can increase the risk of intellectual disability, autism, lifelong epilepsy, and death. As our readers know, Dax’s brain is severely under developed; these spasms are similar to a short in a fuse. The neurons in the brain don’t know where to go when they fire, so they all fire at once. We hope that by adding more doctors to Dax’s crew, a strict medication regimen, and close monitoring, we can keep Dax comfortable and stop or slow down these spasms. We’re so grateful to live only a few miles from Children’s Mercy and their Comprehensive Epilepsy Center, one of only twelve pediatric epilepsy centers in the nation. During our hospital stay, Dax continued to babble to all of the nurses and doctors, and kept his little grin on his face. We’re in awe of his strength and so proud of him. We’re on another hill in our rollercoaster ride.

*Kindly refrain from asking additional questions. We have many unknowns at this time.

More Information

Please keep Dax in your prayers.

Dax made it to Indiana.

After months of staying home, Dax was blessed with a “stable” window. I honestly never thought we’d be able to travel with Dax anymore. Both of my grandmas understood our situation and unfortunately they had to accept that they probably wouldn’t meet their first and only great grandson. But, we finally felt confident to get in the car again. We wanted to take full advantage of Dax being at the top of his rollercoaster so we hurried up and packed our bags and drove to Indiana. We didn’t tell anyone (except my parents). No reason to jinx it, right?

My mom and I planned out the surprise. Once we got settled, she called them and asked if they wanted to get out of the house and go for a ride. Without hesitation, they said yes. She drove them by the lake to look at the waves, then drove through Long Beach. She turned on to Lake Ave and slowly approached the lake house we rented. We were all standing on the front porch (Ozzie too) and my mom told them, “Look over there!” They looked up at the front porch from the car and saw us standing there. They were shocked!

For the record, my mom repeated this surprise two days in a row with each grandma. They both were able to have one on one time with Dax… and Ozzie.

Every Sunday we FaceTime with my parents and we have our nights out in our living room FaceTiming our friends. But it was so nice to spend time together (although it’s never enough). Dax was able to see where his mom grew up and he got his toes dipped in Lake Michigan. He enjoyed the sound of the waves from a distance. We all got plenty of fresh air on our evening walks. Ozzie became friends with a lady down the street. She stopped us on our walk and insisted on giving Ozzie water (even though he had his own in the stroller). He tends to be a little dramatic on our walks; dragging his feet, huffing and puffing with his tongue on the ground. Ozzie’s friend spotted us on the beach too, “You guys are from Kansas right? That’s Ozzie!”

We all got a lot of rest!

Ozzie’s been to Indiana many of times, but this was his first time seeing Lake Michigan too! Once he figured out how the waves worked, he absolutely loved it. If he could talk, he’d be begging us for swim lessons and a beach house.

This is the longest I’ve ever been away from my hometown. I haven’t visited since Christmas. It felt so good to be back. Dax finally met his great grandmas, we had downtime with family. We had a couple of date nights. And we were able to spend time with some of our closest friends that we haven’t seen in almost 2 years.

Our trip was most definitely a success.

August 8.

Today was a big day for our little family. Dax turned 6 months old! It’s such milestone for us (especially for Dax), considering we met with hospice on our last day in NICU. Our lives are much like rollercoaster; Dax is up and down, and I’m up and down. Tyson exceeds at every level at keeping my amusement park of emotions level, I lean on him A LOT. We both try to keep Dax’s rollercoaster on cruise control; steady and comfortable. Some weeks that means many doctors appointments, sleepless nights, countless trial and error moments, and between all of that – each day is high alert. Having a baby that’s unable to swallow means that Dax is ALWAYS in our sight so we can make sure he’s not choking.

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Tyson’s reflection on Dax’s {1/2} birthday:

When Dax was around 1 week old we had a neurologist, neonatologist and a remote geneticist come into his room to discuss his medical findings. One thing I couldn’t understand was how he could breathe on his own, regulate his temperature, digest, and do all of the other “baby things”. Aside from eating, he was doing everything else all on his own and I just couldn’t figure out how. I’ll never forget when I asked the neurologist if he was surprised Dax could do all of these things. Without hesitation, he said, “No, the fact that Dax made it into this world is a miracle. The strength he had to make it through birth is extraordinary. It’s a true testament to him and to his mom for providing him with the nutrients and energy he needed to make it into this world.” He’s 6 months old today! How crazy?! One of Dax’s symptoms is being severely hypertonic. Hypertonia is a condition in which there is too much muscle tone. Muscle tone is regulated by signals that travel from the brain to the nerves and tell the muscle to contract. Dax’s hands are always clenched (usually only relaxed when sleeping or if he just gets his meds). We peel his little fingers apart so he can pet Ozzie. His arms and legs are also stiff and difficult to move. The comparison we were given is that Dax is running a marathon EVERY DAY. That’s right, every single day Dax is running a marathon. Can you imagine that? Could you imagine being brought into this world and your only choice to live is to run a marathon each and every day? He’s ran a marathon for 182 days straight!

Tip your cap to Dax, he deserves it.

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Tyson and I always tend to look at the situation God gave us and what we can learn from it, what Dax has taught us, and what motto’s we want to live by. We can easily say that Dax has taught us more about life from February 8th to now, than we’ve ever grasped in the last 25 years.

Today on his {1/2] birthday, I woke up with him around 4 am to feed him and I sang Happy Birthday to him as he gazed into my eyes… We had flowers and a balloon delivered to the house for his special day. Dax was able to see a big colorful balloon for the first time. I put his face up to his little bouquet so he could smell the fresh flowers. We had a day filled with relaxing and snuggling, watching movies, and a bubble bath. As Dax napped off and on we watched everything that Tyson picked out; a documentary, a comedy, and we ended our movie day with a rom-com (my favorite!). Dax and I danced in the living room to No One by Alicia Keys (it was the song playing toward the end of the movie she produced, Resort to Love).

As I spun my happy 6 month old around in the living room, I sang along to Dax and before I knew it, I sang the words “Everything’s gonna be alright”…. and then it clicked – that was the sign of reassurance I needed. Everything’s gonna be alright… no matter how difficult some of our days are.

One of the life lessons that we’ve learned from our sweet Dax is – there’s joy in each day, even if you have to search a little harder to find it. It’s always there. I’ve said it before and I’ll say it again, perspective is everything. We spend a lot of our days searching for those little sparks of joy.

And lately, we’ve found a lot of joy in hearing his little coos when he’s happy.

Happy Birthday Baby Dax, thank you for fighting to be with us.

Christmas in July.

The gears shifted when Dax was born. Now, the mindset is, live for today, be present in the day, and don’t worry about tomorrow (easier said than done some days) but that’s what we strive to do. Making memories and showing him as much as possible is extremely important to us. Dax has seen more than most have in their entire lifetime, and that makes our hearts happy. Christmas is the most magical holiday, so why wait until December to celebrate?! It’s Christmas at our house!

With it being summertime, and the year of the Olympics, we thought a patriotic theme was fitting. I have to say, it’s comforting have a tree lit up in our living room. And it’s fun to see Dax gaze at the twinkling lights at night. Ozzie had to adjust a little bit – his toys got moved to a different spot to make room for the tree. But, now that Ozzie has learned his new route to his toy basket, he enjoys the lights just as much as Dax.

Happy holidays!