Being married to a man who loves his Excel spreadsheets wears off on you. So when reflecting on how QB and I have been telling anyone who will listen that 2013 was a “much better year” than 2012 or 2011, I thought I’d compile a few figures of my own. So, here’s how 2013 panned out for Lil Z:
We decreased from 17 in 2012 to 8 in 2013. And the even better news is that several of those admissions were planned, including her eyelash surgery and the replacement of her PEG with a mickey button.
I included in this category outpatient appointments with a wide range of medical specialists, including Orthopedics, Gastroenterology, Paediatrics, Neurology, Dietetics, Audiology, Speech Pathology, and no doubt others. We increased slightly in the number of appointments in 2013 to 26, up from 21 in 2012. I think this is largely a result of Lil Z’s broken femur and getting a feeding tube at the start of the year .
This one skyrocketed from 34 in 2012 to a whopping 62 in 2013! This is largely a result of our decision to begin private physiotherapy and hydrotherapy for Lil Z last year. It is also helped by the fact that she no longer screams through sessions, but actually participates (well, sometimes).
We didn’t do so well in this category, but it isn’t as bad as it seems. According to my tally, Lil Z had at least 83 seizures in 2013 – and probably more than that, since my record keeping in August went wonky – compared with around 36 last year. Yes, I know, that’s more than double, but the type of seizure changed which makes it look worse than it is. In 2012, she had 36 flexor spasm seizures, most of which required emergency medication to bring her out of them and many of which resulted in a trip to the emergency room in an ambulance. This year, between January and July, she had 18 flexor spasm seizures. And more importantly, between May and July, she only had one flexor spasm seizure. One! That is three months with only ONE seizure. Awesome.
Then something changed. Despite my shoddy record keeping, in August I’ve noted in Lil Z’s diary that she began having “different” seizures. She goes completely rigid and grinds her teeth. Sometimes her eyes roll around in her head. They last for a minute at the most, but can occur in clusters of three or more. They happen mostly first thing in the morning, although they can also occur in the late afternoon or evening. She often vomits when she comes out of the seizure, but she bounces back fairly quickly – unlike the flexor spasm seizures, where she would sleep or cry for hours afterwards.
Her neurologist and I have discussed the new “tonic” seizures at length and have decided not to do anything about them. As horrible as that may sound, I think it’s the right choice. Her current medication is keeping the flexor spasm seizures (which are more dangerous) at bay. She is happy and alert and her development is improving. An increase in medication may decrease the tonic seizures, but it can also make her sleepy and decrease her level of alertness. And in choosing between little seizures or a sleepy, unalert child, we’ve chosen the little seizures.
My gut tells me that they’re changing again, and things might get worse again before they get better, but for now we’ve found an acceptable balance.
Now bring on an even better 2014!
Oh, and if you ever need an excuse as to why I didn’t get back to you sooner about something or failed to call, write, email or follow through on something I said I’d do, consider that Lil Z had 88 appointments (which excludes playgroup sessions, AFO fittings, special needs pram and support chair consultations, workshops and planning sessions) in 2013, which averages 1.7 appointments a week! No wonder I’m tired…