Every Wednesday and Thursday, the Royal Children’s Hospital runs a “clinic”, at which they (do their best to) make available all the specialists involved in Leo’s care (and naturally, other kids with CF too). I presume the clinic runs for other illnesses too, but obviously we’re only focusing on one here.
Attending clinics certainly isn’t a requirement, but we are encouraged to go along if we have any questions for the specialists. And there are a lot of specialists; his team consists of a psychologist, a psychiatrist, a nutritionist, a cardiothoracic consultant, a physiotherapist, a social worker, an occupational therapist, an overseeing doctor, plus an administrative nurse to keep the whole thing together. There may be more, but that’s all I can think of for now!
Although attending clinic isn’t mandatory, my understanding is that they do want you to come along at least at a certain frequency. For newborns, this starts out at weekly for the first month or so, then when they feel like you’re getting the hang of things, it goes to two weeks, then monthly, and eventually three-monthly. Lucky for us, Leo’s team felt like we had a pretty decent understanding of what we were required to do, and as such, we moved straight into the “two week visits” camp after only one clinic! Yesssss!!
For the most part, attending the clinic involves a lot of talking; we can make requests to see particular specialists, or inversely, any of the specialists can drop in to see us. We don’t see every specialist on every visit – just the ones who want to discuss something with us, or check up on Leo’s progress.
One aspect that seemingly is constant though is the weigh-in. Since CF has such a large effect on digestion, monitoring Leo’s weight gain is of crucial importance. And so, at his clinic last week, he had his first (of many) weigh-ins.
And the result? A total pass! He had gained 700g in the two weeks since coming home from hospital – about three times more than the minimum he was required to gain. What a trooper! We weren’t overly surprised though; he really enjoys his food, to the point where he makes his disapproval very apparent when you take it away from him! And just look at those chubby cheeks!
So, all in all, very good news!