Our life caring for Félip is an emotional rollercoaster.

It’s filled with tough, dire, and even traumatic moments; but also so many happy, funny, and loving ones.

We always strive to focus on positive memories. We often look back at how far he’s come and all the things he’s been through. We then remind ourselves how much easier and better some of his care has become.

On this first day of 2018, we’re filled with gratitude as well as hope for the future.

Before we jump into our next adventures, we thought we would take the time to think back on the past year and appreciate his progress and how much things have improved.

Feeding

In 2017, we switched his feeding g-tube to a MIC-KEY button device that sits right above his skin. We also started a blended diet composed of whole foods (learn how we make his food here).

We’re thrilled that we can now feed him fresh, healthy whole foods. We feel it’s brought a sense of normalcy to our lives.

It now takes very little time to feed him and is such an effortless process. We’re grateful for these changes and advancements, especially given how complex his feeding journey has been.

Development

Félip has changed so much this year! He’s such a little boy now, all grown up!

He’s gained some new skills and abilities.

He’s now able to roll from his back to either side, and is almost making it onto his tummy. He moves his arms and hands so much more than he used to and he can now swing his head forwards and backwards with ease.

Félip used to be such a calm baby that didn’t move very much. Now, we have a grown and very active little boy. We even have a hard time changing his diaper and getting him dressed! We couldn’t be happier or more grateful for these new skills and change in development!

He also started smiling much more in 2017 and making new sounds. We’re starting to see some differentiation in emotions and feelings on his face and through his body language.

His muscle tone is always improving which results in less breathing issues and being able to tolerate different positions better. It’s hard to think that obstructive, noisy breathing used to be a constant issue for Félip.

Mobility

In 2017, we acquired new equipment such as adaptive seats and our minivan. This, combined with his developmental improvments has allowed us to be much more mobile! We can take long day trips to go sightseeing. We can spend several days away from home, out and about doing various activities. We can load all his equipment and supplies in the van and still have plenty of room to lay him down when we stop to let him stretch or change him.

We’re grateful that we can now travel more and provide fun, new experiences for Félip.

We’ve got so many travel ideas and plans for this coming year!

Supports

We tried to take care of ourselves in 2017. The more mentally and physically rested we are, the better we can take care of Félip and pour all our energy into him.

We set up regurlar weekly at-home respite in 2017. We were thankfully able to find a great worker privately through a reference form another family. She’s amazing with Félip and is just a pleasure to have around.

We also took our first significant trip away from Félip in 2017. We both went to Mexico for 9 days. We utilized the RFH (Rotary Flames House) for respite, and everything went well.

After the trip to Mexico we now have a better idea of how we might handle future traveling without Félip. Although, our goal is to bring him with us as much as we can!

We also started a pre-school program with GRIT (Getting Ready for Inclusion Today) in September of 2017. This is a 3 year government funded program for challenged children. GRIT is one of many pre-school providers/facilities within the program.

We couldn’t be happier with GRIT and the whole pre-school experience!

Félip is getting more support than ever before with his great worker that comes in everyday to do activities to support his development. We also have a full team at GRIT with a physiotherapist, occupational therapist, speach and language pathologist and educational therapist that are guiding his specific program.

We’re so grateful for these new supports and all the help we’re getting for Félip’s care and development.

Health

In 2017, we noticed that Félip’s immune system has gotten stronger. He seemed to fight off viral infections and colds with much more resilience. We were actually able to keep him at home for most small colds and minor infections. We also noticed that he wasn’t sick as frequently compared to prior years.

We’re grateful that he’s still a relatively healthy little boy, despite his many daily challenges and medical issues.

Although 2017 might have had its share of tough and stressful moments, it was also filled with happiness, laughter, and continued progress.

Now, let us jump into 2018, full of hope and positive energy!

As always… Love. Laugh. Repeat.