The other shoe

After having a month without doctor appointments, we’re back in the throws of juggling schedules to make all of our appointments fit. (We’re not doing so well with it — poor Colin has two appointments in one day on the 27th.) This week, Colin finally had his six-month follow-up appointment with the pediatric ophthalmologist (only 2.5 months late) and an appointment at the high-risk clinic at the hospital.

The ophthalmologist appointment went well. John took Colin, who was very quiet and snuggly throughout the visit. His vision is fine, and he does not need glass nor does he need to see an eye doctor again until he’s five, unless we suspect he’s having trouble seeing. 

The appointment today at the hospital was a mixed bag. I always enjoy going back to the hospital with one of the babies. People there still remember us, and it’s nice to be able to chat again with so many of the people who helped keep us sane while we were practically living there last year. 

The appointments at the high risk clinic (at least at our hospital) are always the same routine: Colin gets weighed (he’s up to 17 pounds, but I think their scale tends to weigh a bit light), measured (he's 27.5 inches now) and has his blood pressure taken. Then we see an occupational therapist, and finally one of the neonatologists from the hospital. They assess the babies as preemies (whereas their pediatrician assesses them as babies), and make recommendations about specialists or extra services we may want to pursue. 

Occupational therapy assessment has gone quite quickly for us the last two visits, because Colin’s therapist is also the therapist at the clinic right now. When she walked into the room, Colin’s eyes lit up and he reached out to her. He had fun “playing” the games she presented him with, and was very proud of himself. Since she already knows him well, this ends up almost being like an extra session.

Colin is very advanced in his fine motor skills — testing between 14 and 15 months (at and above his actual age). However, he is still only at a six- to seven-month equivalent in his gross motor skills. He also remains high tone (especially in his shoulders and ankles) and has slight torticollis (his head favors one side/doesn’t rotate fully to the other side). 

As a result, he presents a mixed bag, from a developmental standpoint. His coordination and fine motor skills are very good, and he’s making progress (very slowly) on his gross motor skills. But at the same time, his tone is not improving much (or at all) in two of the key areas. So Colin is now adding another specialist to his collection: a neurologist.

This is that proverbial “other shoe” dropping that people always talk about waiting for, and in a way I have been waiting for it. While no one said it, what they’re having Colin evaluated for is cerebral palsy. And honestly, part of me is surprised it hadn’t come up sooner. He is at very high risk for cerebral palsy, and has several of the classic “symptoms” or signs. 

Now, in reality, a diagnosis of CP doesn’t really affect anything — it’s not a degenerative or progressive disease. It is what it is. And if Colin really has CP, he isn’t going to be any different after labeling it as such. He’s still going to be our gung ho, into everything, working on learning how to walk and ignoring sitting little guy. It just means it isn’t likely to get any easier for him as he gets older. He’s not going to just grow out of the need to work twice as hard to accomplish these milestones.

Of course, Colin doesn’t present a classic case, because of the strong coordination and fine motor skills. So the neurologist may say it’s nothing to worry about, or that we should wait until he’s older to do an assessment. We won’t know for sure until next month. But in the mean time, that tender shoot of normalcy has again been squashed under foot. We’ve been reminded that our babies aren’t normal — they’re preemies.