Hi Everyone,

These past few weeks have been more routine and relaxed as compared to the busy festivities at the end of last year.  Maddie continues to have three to four therapy sessions per week with doctor’s visits here and there.

Maddie’s biggest accomplishment recently (that we’re so proud of!) is her ability to sip from a straw with no help!  As mentioned in last month’s post, Maddie’s been working on sipping from a straw with the speech/feeding therapist.  We’ve been using a bear compression cup (see below), which allows us to squeeze the bottle so the liquid comes to the top of the straw so Maddie doesn’t have to work as hard to get to the liquid.

Over the past weeks, Maddie’s been doing better and better (i.e., less leaking out of her mouth, closing her mouth around the straw, knowing to sip when the straw is in her mouth) and during last week’s therapy session, the therapist asked me not to squeeze the bottle to see what Maddie does.  Well, she sucked the milk right up and out through the straw like she’d been doing it all along!  We were thrilled and even after being home, she’s consistently sucking her milk out of the bottle.  Although it’s still not a lot of volume (1/2 – 1 oz) at a time, we’ll work on increasing that and then hopefully switch to a ‘normal’ sippy cup.  Additionally, we currently thicken the milk with baby oatmeal cereal to prevent choking, so that’s something else we’ll have to also slowly work on thinning out over time.

On another feeding win, Maddie is also back to eating her puffs whole and loving it, just like she did before her surgery!  We’re even practicing putting them in her hands and bringing them to her mouth.  She even knows to open her mouth on her own as we bring her hands to her mouth.

Maddie‘s head/neck control and core strength have continued to get stronger.  She’s still practicing her sitting during her sessions and also starting to bear more weight through her arms/hands in the crawling position.  Below are some recent pictures from therapy:

We went to an equipment clinic (to fit Maddie for orthotics) last week.  Although the clinic was with HSC (Hospital for Sick Children), it was located at the Early Intervention office in Fairfax and our therapist joined us for the clinic.  Since Maddie has shown so much interest in standing (rather than sitting), the therapist wanted to see how she would react in a stander.  Turns out she didn’t mind it at all! She stood very compliantly in the contraption (see below) even though she was tired and late for her next feeding.  We borrowed the stander and Maddie’s spending 15 minutes in it 1-2x a day.  We are mindful of the time spent in the stander because we want it to be a pleasant experience (since it’s helping her bear weight on her legs/feet).  Although not pictured, there’s a table that comes up from the bottom that she can rest her hands or play with toys on so it’s not a bore while she’s standing!

We also saw our neurologist recently and he agreed to decrease Maddie’s anti-seizure medication dosage.  It all started when our usual pharmacy couldn’t fill Maddie’s anti-seizure medication that she’s been on since the June surgery.  It was a precaution since she hasn’t had any seizures and only started the myoclonic episodes in October.  Since the pharmacy couldn’t refill her medication in time, Maddie only had half a dose Saturday night and none Sunday morning.  One of the side effects of this medication is drowsiness, which makes sense since it’s an anti-seizure medication, but Maddie’s at a pretty high dosage for her size.  The Sunday she didn’t have the medication, the severity and frequency of her episodes did not change and her eyes were wide open for most of the day even after waking early and not having her morning nap.  Bill and I were very surprised at how alert and verbal she was being.  Earlier we had postulated that the myoclonic episodes occurred predominantly during her drowsy periods between being asleep/awake.  This accidental missed dose and her subsequent alertness triggered a hypothesis – could the medication be causing either the frequency or severity of the myoclonic episodes to increase?

I wrote a long e-mail to the neurologist with these observations and asked if maybe the side effects were outweighing the benefits of this medication and he asked us to go in for a visit.  We went last Friday and he was willing to go down in her dosage (still in the therapeutic range, but lower) for a week to see how she reacts.  So far, the most obvious difference is the decrease in severity of Maddie’s episodes.  During the day, her episodes are fairly mild and she hasn’t had any that have made her cry, just an occasional frown here and there.  During the night, she’ll usually have an episode that wakes her up crying, but they’ve been milder this week and she didn’t have one last night!  She slept straight for 12 hours, finally giving us a good night’s rest 🙂  I reached out to the neurologist today to discuss next steps and am waiting to hear back.  He did suggest starting Maddie on another medicine last Friday, which I’m wary about, but more to come on this!

To end, here are some happy Maddie pictures…

And some sister love 🙂

… and of course, Abby multi-tasking and drinking her own milk at the same time 🙂