Month: March 2017

When we go for long stretches of time without a major developmental milestone happening, it can feel scary. I start to worry that Jojo is not going to catch up. What does catch up mean? To me, it means she will overcome her delays quickly enough to eventually be in the normal range of capability for her age. Because ultimately that is what we are working toward. All of the therapy and services, all of the work we do with her at home is to get her caught up. Normal. Unfettered from anything that would hold her back from what she wants to do in life. So when weeks or months go by and she isn’t doing anything new, doubt creeps in.

When one of these long stretches comes to an end, it is so joyous. And last Friday was a joyous day. Jojo stood on her own two feet. No leaning on the couch or other piece of furniture. Just the light touch of her PT’s hands to make sure she didn’t fall. Words on this page cannot do justice to how I felt when I saw her standing. I was filled with pride and happiness. And to best honest, relief. Because as much as I try to stay positive and always believe she will get there, I need a bit of proof every now and then.

Yesterday she had PT again and she didn’t stand. And that is ok. Last Friday will keep me going for a while.

Jojo just turned two, and like every parent says on their child’s birthday, how is she two already (or some version of that). But seriously. How is she two already. This birthday is a little complicated for me. On Jojo’s first Christmas she was 9 months old. We were in Michigan for the holidays. I was spending an evening with my mom and sister and we were guessing when Jojo would walk. My prediction was that she would crawl at 18 months and walk at 2 years. This was based on absolutely nothing and at that point I only had 4 months of experience and knowledge of hypotonia.

Now I know she will likely walk before she crawls, and may never crawl. I also know there is no way to predict when she will walk, but in harassing her physical therapist I’ve learned she’s had kids with similar severity of low tone and they started walking around age 3. I’ve also learned that when kids with low tone are strong sitters, it is a very good indication that they will eventually walk. Jojo is a champion sitter. These are the little bits of information that keep me encouraged.

So Jojo is two. Something in my mind has shifted and she is now definitely a toddler.  We often think of babyhood ending at one year of age and toddlerhood starting because that is normally when toddling / walking starts. And with movement comes the transformation of beautiful, chubby, baby-like features into toddler features – the elongation of the neck, the thinning of the chub. Without that movement Jojo still has her beautiful chub. And with the low tone in her cheeks, well, you’ve seen her. So it has been hard to think of her as toddler when she looks like a giant gorgeous baby. Thinking of her as a toddler helps to expect more of her and push her to do more. Which is exactly what she needs.

Jojo’s second year is bringing lots of change. She is starting a new program at a new school. It is an early intervention program at an integrated preschool. She will go two full days a week on Thursdays and Fridays. She will continue to get speech therapy at home twice a week. Her home physical therapy is going from once to twice a week. She is so ready for school. We are so grateful that there was a rare opening. This will open up her world. She will get comfortable with being outside our home, around other kids, with other adults (which she has zero tolerance for now). I’m expecting a very difficult transition. And that is exactly why she needs this program.