Another week has flown by and I’m happy to report that Vivian is still seizure free! :) This is so awesome. *whispers* Day 25.
On Monday we went to Vivian’s first session at the Champion Centre. It was pretty interesting, although it was very short! The team got a chance to see Vivian in action under a play gym and got to know us as a family a bit more. I think at this point it will be a slow and steady progression (I hope) to new things with her there.
She is also hitting some milestones in the coordination department with her visual tracking and reaching for toys. We noticed her showing some real determination last week whenever she was on the changing table where her mobile is. Although she would be tracking the toys visually, she would be grabbing off to the side and not really grabbing at the ones she was looking at. Then suddenly something clicked a few days ago and she is now actively trying to grab the one she is looking at for the most part! She does a bit of both in the video below.
She is using her right hand more than her left at the moment, and the physiotherapist at the Champion Centre showed us how to stroke her left arm to give her some spacial awareness of where her arm is. As soon as she did that, Vivian started reaching with her left arm as well. You can see she likes to keep her hands in fists most of the time, unless she’s really relaxed. Hoping this continues to improve with time, too.
She keeps surprising us in many ways! I can’t wait to see if she can roll over eventually. From the way she kicks about when she’s upset, I think she will be able to.
We had a follow-up with the ENT specialist on Tuesday morning. Vivian has moderate conductive hearing loss in both ears and they’re still unsure as to exactly what is causing this. She is being referred to an audiology clinic to get fitted for hearing aids sometime soon. It makes me wonder how much of a difference we will see once she has the hearing aids in and on. I am afraid that she won’t like them or that we’ll struggle with taking them out/putting them in during the right situations. She is so easily over stimulated, I would hate to add this to her plate!
We also had an appointment with neurology on Tuesday (haven’t seen her actual neurologist for a few weeks. Saw the registrar again) and because Vivian is still seizure-free, we have started weaning her off of the prednisone! So her daily dose of 8ml has been lowered to 6ml per day.
You would think this would mean an improvement in Vivian’s overall mood but we’ve seen the opposite effect. Vivian is back to having some extremely unsettled periods (non-stop high-pitched screaming where nothing seems to sooth her) and she’s returned to not eating as well, like she was before we began the steroids. I have read this is a pretty common side effect of weaning off steroids appetite suppression and irritability. It’s made for a rough couple of nights so far, but luckily she is asleep as I type now. Long may it continue!
I am hoping that after the wean she will continue to eat better than she did before the steroids and not lose weight, but time will tell. She’s now weighing in at 6.15kg, which is up 750g from what she weighed the day we started the prednisone, 3 weeks ago. You can definitely see it in her face! Chubby cheeks galore.
Although she is extremely unsettled sometimes, her smiles have returned in full force when she is happy, and she’s started talking to us nonstop as of yesterday. I’m talking full-on conversations! So cute. And really great eye contact during them. It really cracks us up when she just talks and talks and talks.
She’s started staring into my eyes very intently at night after Ben’s gone to bed and smiling at me. And enjoying kisses! So, so amazed at how happy this makes me. We were told that she may never be able to register what she was seeing at all due to the damage in the visual center of her brain and look at what she can do already.
The only downside to our new googly-eyed girl is Vivian seems to only have eyes for me at the moment! Poor Ben is getting the huge, adorable frown whenever he kisses her, or worse, real tears. Hopefully this improves quickly, because I’m due back at work on Monday! I already feel guilty just thinking about her crying at him while I’m gone :( I didn’t think it would be this hard to go back to work. Maybe under normal circumstances, it wouldn’t be, but alas. Our ride has been anything but normal from the get go with Miss Vivian.
I’m tucking all of these magical moments away to save for later. I wish memories didn’t fade the way they often do. I realized last week, once my nose cleared up after my cold passed, that Vivian no longer has that newborn smell :( It disappeared when we were sick and it made me SO sad to discover that it was gone! I actually cried. I keep sniffing her head hoping it’s back, but so far it hasn’t been. If I had known before I got sick that it might be the last time I smelled it, I would have smelled it a lot more often. For shame!
Hoping the seizures continue to stay gone. And that her newborn smell magically comes back. :)
How has your week been?