He’s a warrior. He’s strong. He’s the hardest worker I know.

Photo: Copyright House of Kosi

38 weeks, 3 days in VS. 38 weeks, 3 days out

Today – 11/8/18 – Callan has been here earth side as long as he was in the womb. With regards to children growing, I’ve heard it often mentioned that time flies. But I didn’t expect it to fly THIS fast. Pregnancy certainly didn’t! I always say that trying to slow down time is like grasping at the wind. No matter how hard I try, I can’t get a grip on it. As Callan’s Mama, I’m filled with equal parts sadness and pride. Sadness that these days are fleeting and my baby is so quickly growing up, and pride at just how much he’s thriving and the person he is becoming. I suspect every mom feels this way at one point or another.

In honor of his milestone today, I thought it would be fun to do a side-by-side comparison of my last bump photo (taken at the end of a FULL day of contractions that was later deemed early labor, so take it for what it is lol) and today. I thought it would also be a good time to cover where we’re at currently with Callan’s health and development, specialists, therapies, etc.

Callan was in a bit of a hurry to arrive (for no reason, really, except that he was just ready) and was born at 38 weeks, 3 days. He spent some time in the NICU for pulmonary hypertension. Essentially, he needed a little more time and supplemental oxygen to adjust to being outside of the womb. This warranted some extra echocardiograms within his first few months but it’s all been resolved and he has been discharged from cardiology – forever, we were told.

There were initially some concerns with his hearing but that has been deemed normal now. His vision is perfect and his thyroid levels are great. His hearing, vision and thyroid will all be retested and followed closely as he grows. He does have some chronic congestion, which is common in general but in particular with his anatomy. At his age, there isn’t much we can do for it, so for now we work closely with his pediatrician and ENT to keep symptoms in check. He recently started reflux medication, which is finally starting to help his symptoms and also congestion, so it is likely all related to a degree.

He just started speech therapy once a month. At only 9 months old, it’s going to be less focused on word usage and more on honing the skills to help him communicate via play. His initial consult went really well. His therapist was impressed by him and told us we should be really happy with where he’s at. We now have some good tips to keep in mind when talking and playing with him, and will adjust as he grows.

Callan does have hypotonia, or low muscle tone, which is a very common trait that accompanies T21. His is mostly noticeable in his core (which aids his reflux issues) and it’s the main thing we work with him on. We were VERY confused about what hypotonia even was initially. His physical therapist is the only one who described it in a way that we could finally understand. She said even though it’s muscle-related, it’s not a lack of strength. He’s actually incredibly strong. To demonstrate, she said if she was working with a baby without hypotonia and lifted his arm, he would likely hold it up or slowly lower it back down. She then held Callan’s arm up and it dropped. Granted he was only 6 weeks old at the time, but after that it made sense to us.

We have no doubt he’ll get to where he needs to be and will reach all milestones. It just takes extra work on his part (and ours) in some areas and targeted exercises for the tone to improve. He is still in PT twice a month and for the time in between appointments, his therapist provides us with ways to play with him that will help him reach his goals. Right now he’s working toward sitting up and crawling, and he’s getting closer by the day. He LOVES being on his tummy (moreso than any child his therapist has ever seen) and is fully capable of rolling, but prefers not to or at least is hesitant to. So we are working on that as well. While he does have low tone in his core, he did not require any help with his mouth, where lower tone can also cause some issues. He’s had no problem with breastfeeding, bottles and now eating solid foods – all things we were warned he’d likely require therapy for.

As a parent, I do struggle at times with the sheer number of appointments, specialists and therapies he has at such a young age. We of course are grateful for the doctors and programs that are available to help in so many ways. And we are all for any of it, if it will benefit him. But we also want him to have adequate time to just be a baby. That’s why we make a concerted effort to reassess often what is helping, what is not, what isn’t needed and then talk to his specialists/therapists and make changes accordingly. For example, he’s been in PT since he was 6 weeks old, but we nixed OT for now since we were seeing no benefit or need for it.

Something I also want to cover is what I struggle with at times – (likely self-imposed) pressure regarding his development. I KNOW he’s thriving and I KNOW I’m doing a great job as his Mama, I do. Both of those I never question and never will. But each day the question that does plague me is, “Did I do enough for his development today?” Enough play time, enough tummy time, enough rolling, enough sitting practice, enough exercises, enough signing, enough focus on motor skills, enough enough enough. As a mom, of course you feel responsible for your child’s development. But as a mom of a child with special needs, I almost feel personally responsible for each step. The only way I can explain it is if a child without special needs wasn’t taught a certain skill, he or she would likely learn it at some point anyway. But with a child that needs extra help in multiple areas, if I don’t teach him the skill, will he ever learn it? It may sound crazy, but I’m pretty sure I’m not alone in that thought and I’m working on putting it into perspective daily.

Bottom line, we’ll do anything in our power to help him grow to be the person he was meant to be. We’re just so damn grateful for him. He simply blows us away with his accomplishments. He’s a warrior. He’s strong. He’s the hardest worker I know. We celebrate him every day and every single milestone or new skill. We take none of it for granted, which is just one of the many lessons he’s taught us already.

Have questions? Ask away!