Update: Arden, Spring, Easter, & Next Steps

Spring seems to have signaled change in the air! The sun is regularly shining through our windows and it’s definitely caused me to feel uplifted. Spending time with our little family has brought me so much joy, and I feel a sense of hope for the future.

Arden has been doing so great. We’re using words like “healthy” and “happy” and “thriving” a lot. We’ve had a peaceful Winter and Spring so far. This past week, after weeks of backtracking a bit because of teething, our sweet boy went back to only using 1/2 a litre per minute (LPM) of oxygen. This is huge, because it means he barely needs any extra oxygen. Arden will likely need ventilation for quite some time, but we’re so excited at the prospect of progressing towards not needing extra oxygen. That way, we could ditch the concentrator while at home (for the most part) and not hook up to an oxygen tank when we travel. It would be a huge leap for Arden.

In the past few days, Arden also learned to sit, with very minimal support. He’s still quite wobbly, and he sometimes topples over and needs to be caught. But it’s a huge step in the right direction! We’re still working on tummy time. Arden absolutely hates it and finds it difficult to push his upper body up with his arms, but we keep practicing. It’s so cute to see him bobbling back and forth as he tries to maintain his balance while sitting! Lately Arden has also been using his legs more and more. He now bounces and turns himself in his exer-saucer. He’s rolling more and more, reaching farther and scooching his body over to obtain toys of his choice.

We had an absolutely wonderful Easter long weekend! Brodi had the Friday and Monday off work so we got to spend 4 days as a family, and it was lovely. Arden was spoiled with Easter presents delivered by his grandparents, and we actually got out and about! On Sunday we took a drive and stopped by the lake property that Brodi’s sister and her husband own. The property is home to a beautiful house, and the most adorable little cabin. I absolutely loved the tiny cabin! It reminded me so much of all the weekends that Brodi and I have spent at his family’s trap line cabin in years past. Right now we aren’t able to take Arden there because we need to have access to full power, cell service, and emergency services, but one day we hope to get back there as a family! As much as I’m also a fan of the comforts of life, I very much grew up in a house of minimalism. My parents taught me the fun of “roughing it,” and I have no problem packing light and enjoying a weekend in the wilderness. I miss that part of us a lot. Brodi and I crave the outdoors and the freedom of being away from civilization. It’s not possible right now, but little trips like the one we took on Sunday help to rejuvenate our spirits.

Lately it’s been amazing to see Arden’s little personality change, and to watch how his interactions have grown. He now reaches towards Brodi and I with one or both hands when he wants us to come to him. He’s learning the concept of “gentle,” and listens when I tell him to be gentle while touching our faces. Due to the cuff in his trach, he still (usually) can’t make sounds, but he finds ways to let us know what he wants. He regularly giggles (silently) and thinks its funny if he repeatedly drops his toys on the floor for us to pick up. Yesterday, however, we took down his cuff for a small trial to see how he would do, and we were immediately able to hear his little coos. For us, it was the most beautiful sound in the world!

Arden loves sounds, like music, and tapping, as long as they’re not too loud. He loves to make noise with his “smacking stick” (a drumstick that came with a xylophone that was a gift from his grandpa), and he regularly taps it on all his other toys.

Our little boy has learned the concept of “my turn” and “your turn,” and although he doesn’t always willingly share, we are using this technique to model activities that we want him to become comfortable with. For example, we’re currently working through his oral aversion with brushing his teeth. Brodi or I will say “my turn” and either brush our own teeth in front of him, or pretend to use his tooth brush on ourselves. We then say, “your turn!” and he willingly opens his mouth for the tooth brush to go in. This is huge progress for a kid who didn’t want anything to pass his lips for quite some time!

The snow is slowly melting around our house. And I say slowly because we have a beautiful treed backyard, and the shade means that it takes a lot longer for the snow to melt here than anywhere else. This winter and spring we’ve filled our house with house plants. Especially since Arden and I haven’t been able to go outside much, it’s important that we bring the feeling of nature indoors. When it warms up we hope to spend lots of hours enjoying the weather on our back deck. Until then, Brodi has been starting seeds for our garden indoors. Last year he did raised garden beds, and we’ll do those again this year too, but we’re also going to put in a ground garden as well. When we moved here, our place was just a house in a field. It’s fun to see it come together and become our own little oasis.

This weekend, we spent a lot of our time indoors, simply so that we could all be together with Arden. But it was wonderful. Brodi and I never were really great at going out for “date nights,” as we always much preferred mixing beverages for each other and cooking together in the kitchen. To be honest I’m usually the mixologist and assistant as Brodi creates our amazing meals. But it’s a lot of fun and we love being in our own space in the comfort of home. Now our date nights just include Arden as well!

I’m saddened that we can’t enjoy the changing of the seasons with friends and family as much as we would like to, but I’m hoping this summer will bring change for our province and country, and that our lives will soon begin to normalize a little bit. For us, the covid protocols don’t change our day-to-day activities very much. Arden and I can’t just pack up the car and go places anyways. And regardless of covid, we would still be extra cautious with the goal of keeping Arden healthy.

After an incredible whirlwind of a year, Arden’s 1st birthday is coming up in a few short weeks (April 29), and that will be cause for celebration! I will be decorating our house and making it a big occasion for him, because you only turn 1 once after all! You can bet that I will subject Brodi and Arden to many, many photo opportunities!

Soon we’ll be getting in touch with the Stollery clubfoot clinic and orthopedic team to develop a plan for Arden’s legs/ankles/feet, and making arrangements to go down for trach clinic, where we will see pulmonology, ENT, respiratory therapy, and our home nutrition team. Ortho and occupational therapy will likely try serial casting as an attempt to gain more range in Arden’s lower limbs, and we know that if that doesn’t work, he will likely require some surgery to help make corrections. We’ll be interested to see what Arden’s respiratory team has to say. We haven’t made any big changes since we’ve been home, but Arden has definitely progressed in a positive direction! For now, we’re just enjoying the quiet times at home, being mindful and grateful for every moment.

XO, Rayel