Our car is littered with green Visitor stickers. Leo and I each receive one at every therapy appointment when we're screened entering the building, which we do twice a week. Since he doesn't like how stickers feel, his goes on his back. During physical therapy today, his face streaked with tears, he leaned against me and my sticker during a brief break and came away with a 10-24 ink blot on his cheek.

He typically sobs for the whole hour of PT. It's hard stuff, working weak muscles, yet even though he's mad about it, he always does the exercise. Lately he's cried the whole way home, too, a drive that's been taking around 40 minutes. Leo is putting forth all the effort here, yet I'll admit that it's exhausting me, too. But when we get home and his sisters excitedly run up to him from the swingset, his grin is worth it.

We're working on his core and hip strength in PT. Those weaknesses make it impossible for him to stand on his own, let alone take a step. Hopefully he'll be getting his SMO (supramalleolar orthoses) braces before too much longer to help with his pronation; instead of his arches popping up, his feet lean inward toward one another. He has hypotonia, or low muscle tone, which means he has to work that much harder to do simple things we take for granted, like standing up.

At last week's PT session, his therapist had him use a gait trainer similar to this one to walk around the gym track. It was amazing to see him walking this way: When he holds our fingers to walk around the house or outside, his form isn't great, but using this walker, he was much steadier and more adept than I expected.

Some happy news is that his occupational therapist and I decided this week to go from weekly sessions to every other week. Seemingly out of nowhere, Leo met several of our goals this week: He stacked four blocks, used dot markers on paper, put a ring on a stacking toy, and was able to put peg toys in holes. (It all sounds simple, but his therapist explained all the complexities involved in simply stacking a block: You have to intentionally pick up a block without your hand below it, place it where you want it to go, make sure it's fully on the other block for balance, and then let go without knocking it over.)

With these therapies through TEIS (Tennessee Early Intervention System, the state program that covers Leo's therapies until age 3), we work in 12-session blocks of time. Moving OT to every other week stretches us out further and allows more time to work on these skills in the interim. Because honestly, there are some weeks we as a family really struggle to get Leo through all of his daily PT exercises, his sensory sensitivity exposures (kinetic sand, putty, cotton balls, etc.), and OT tasks — not to mention battling his exhaustion from poor naps at day care; being patient, involved parents to our daughters; keeping up with school activities; and having jobs. Any parent of small kids can attest to how very busy this time of life is, and tasks slip through the cracks, yet with Leo's needs, it feels like whenever we don't make it through his to-do list, we're failing him.

We've opted to have DT twice a month: once at home or virtual, and once at day care. His therapist visited his day care last week and said the teacher is doing a great job involving him; for example, she was reading a book and asked the kids to each come up and touch an element in the book. When it was Leo's turn, she went over to him so he could participate.

We're really happy with how he's doing in day care. Morning dropoff is getting easier, and he's usually all smiles when I pick him up in the afternoon. He's interacting with the other kids, trying new things, feeding himself, and soaking in so much learning.


Overall, this kid is just a champion. He is so much fun, climbing all over the furniture, still loves reading books most of all, gets such a kick out of the "Bluey" theme song, and shouts "car!" and "airplane!" each time one passes. He is expressive, snuggly, and so amenable about the many hard things he's challenged with doing. At a recent genetics appointment, the doctor said one reason to test his brain tissue (a sample was taken during his frontal lobectomy) is so he has that genetics information for if one day he wants to have biological kids. So often, kids like Leo are treated as patients or case studies, yet this doctor talked about Leo getting to be a parent one day. It made us so happy. Whether or not that's his path, we are really lucky to be his parents.