I managed to get Vivian asleep in her bassinet tonight, so I have time to write a quick post.
We’ve made it past the one week mark! In fact, we’re now into day 10, which puts us at a tie for the longest Vivian has remained seizure free since she started having infantile spasms. I’m almost afraid to keep counting days because I don’t want to jinx anything.
It looks like my fears about Vivian acquiring an oral aversion can be laid to rest. She is eating like a horse now, and will take a bottle almost any time it’s offered, instead of just after waking like she normally would. And she’s putting on weight well again after not-so-great gains since her follow up appointment with her doctor; she put on 100g in the past two days! I know rapid weight gain is a side effect of the steroids, but I’m hoping this one isn’t too bad for her in the long run.
She will also tolerate the prednisone syringed into her mouth without too much hassle, as long as we do it in small amounts and distract her with bouncing and/or funny faces, and because she’s so hungry, she will happily take her gaviscon with a bit of milk in a bottle too. So medications seem to be easier given all around and we are falling into a good rhythm of sorts.
We had some really bad sleeping days this week, which was hell on Ben and I because we have both been sick. We cancelled the meet & greet at the Champion Centre because we were afraid of getting other folks sick, and I cancelled my follow-up appointment with the doctor who delivered Vivian today due to still being sick. I hope it gets rescheduled soon (it was supposed to be a 6-week follow up…Vivian is 12 weeks now). I have a feeling I should’ve just gone to the appointment, but I feel like death warmed over.
I am praying Vivian doesn’t catch it and am doing my best to not breathe on her. It’s hard for me not to kiss her little face, though!
It seems like I’m her favorite this week. Vivian has even started falling asleep in my arms on a regular basis, which is so lovely :) And she is becoming much more vocal with us. Ben’s new favorite pastime is having babbling conversations with her on our bed, which is adorable. She also seems to be easier to settle when she is upset, which is also something I don’t want to jinx. I’m not sure if this is due to the prednisone tiring her out, or what, but I will take it.
And we are still getting smiles. I was so afraid that the steroids would make her super unhappy, but that hasn’t happened yet. She really digs this new mobile we got off Trade Me- it’s pretty neat in that it can clip on to anything. We saw one like it at the follow-up appointment and Vivian seemed to like it, so I hunted one down. Happy to say it’s the best $20 we’ve spent since we got the Nature’s Sway hammock! She really loves tracking the little faces and I’m so glad she is still smiling every day.
We have an appointment with her neurologist on Wednesday, after another audiology appointment. Hopefully he’ll have some news about what her EEG showed for us then. Not looking forward to the audiology appointment, though! It’s the fourth time we are getting her hearing tested; there seems to be something mechanically wrong with her ears (not neurologically, like you would expect considering everything else going on) and we have been referred to an ENT specialist to try to pinpoint what is going on. At this point we’re not sure if she will need hearing aids or perhaps require surgery. Lots of unknowns.