On this New Year's Eve I was thinking back on the year, and it was great to realize that we did not spend one night in the hospital! Her first few years of life, we averaged 60 overnights a year in the hospital, and now we're at zero!! 2012 was also the year that Lily started Afinitor, and what amazing advancements have been made this year due to this medication! Seizures are still at 0-3 a day and most days are 0-1 and her seizures are down to 15 seconds or less. Also this is Lily's first year that we did not have to use Diastat!! We had a few times where we had to use Ativan while adjusting meds, but we used to go through Diastat very quickly and Ativan was a weekly rescue med. I can't remember the last time we had to go to the ER (those averaged 15 times a year) and only one ambulance call this year (these used to average 10 or more). Seriously, what amazing advancements!!
Also, Lily has learned to feed herself, to play with toys, to increase eye contact, to last an hour at home school (She loves Ms. Sharon), to recognizing grandma's voice on the phone (she can't stop giggling when she hears grandma), and is progressing towards crawling and walking all the time. We have so much to be grateful for. I won't say that 2012 was easy because tuberous sclerosis is never easy, but we are no longer in the state of constant medical emergency. I believe a lot of this progress also comes from moving her care to Dr. Sotero's team at Swedish Hospital in Seattle. It has been such a relief to get medical care for Lily where we feel confident in their expertise, and we always find that they listen to our needs and concerns--a very different place than we were in at the beginning of Lily's life.
With all of our movements forward, Lily was sick a lot this year on Afinitor, but for the last 2 months or so she has been doing better--since the addition of the probiotic and prophylactic especially. With her doing better, we are starting to get our lives more organized and getting Lily on a better schedule which will hopefully bring us even more normalcy and calm.
I hope that 2013 continues with advancements at the same pace! And who knows, maybe in 2013 Lily will crawl! Maybe she'll walk! Maybe she'll talk! Maybe we'll get better seizure control! And Maybe, just maybe, (nothing wrong with dreaming big), we'll find a cure!
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