Hi Everyone,

It’s been a little crazy with the holidays and everything else since the last blog post, but the amazing news is that Maddie’s convulsing seizures have continued to stay away so we are currently free of those types of seizures!  In the past few weeks, we’re starting to see some eye fluttering and single twitches, but it’s still a huge change from a few months ago.  Since our last post, we’ve weaned off of the steroids (early January) and thankfully the side effects (lack in alertness, fussiness, etc) also went away within 1-2 weeks.  Her alertness/awareness and ability to interact with us has drastically improved.  It’s really quite amazing to see these changes.  We’re able to get her to smile multiple times a day with foods she loves (e.g., nutella!) and favorite sounds (e.g., certain toys, familiar voices).  We love that she’s “with us” more often and it also makes for easier smiles when taking pictures 😉

See below after being fed Nutella!

With Maddie’s current state, we’ve been able to get back on track with our therapies without having to worry about being interrupted by seizures.  She’s been rolling across the room again and spinning her body around in a circle with her legs on the floor.  The rolling has been on both sides and I would actually go as far as to say she no longer has a preference for a certain side in terms of rolling, which is a huge change from before!!  She’s also using both her hands to play with toys.  It’s just been amazing how much more alert and aware she is compared to a few months ago when her seizures were at their worst.  Below are a few pictures from PT after her wean off the steroids.  I can’t even remember the last time she smiled during PT!!

Prior to starting steroids, Maddie’s right ankle was extremely tight and we were at the point of considering medication/botox and other interventions.  However, since we started and even after we stopped the steroids, her right ankle has become a lot looser and is manageable with just stretching.  We saw her physical rehab medicine doctor recently and we’re thrilled with how the steroids kind of “reset” that muscle tightness and her overall state after coming off of the steroids.  When her right ankle was tight, Maddie had a really hard time using the gait trainer because she couldn’t step with her right leg because it would just tense up.  However, now, she’s able to get back to practicing walking on a daily basis!

Below are some smiles while walking!

 

One of the biggest improvements since the steroids is the use of her right hand.  Although her left hand is still her dominant side, her right hand is coming up for toys and she’s now playing with toys with both hands (which would’ve been a rare surprise a few months ago!

She’s also bringing her hands together to midline more which is an important developmental milestone!  She has been doing this quite often recently and we rarely saw it before.  See below for pictures while in her adaptive chair as well as her stander!

Since Maddie’s been more alert, preschool has also been able to get back on track.  Below are pictures of her using her hands to play with toys.

Maddie has been at the max height of her old stander (which her previous PT from Infant & Toddler Connection lent to us) for a couple months now, but we were finally able to get the next size up from Equipment Connections, a nonprofit organization that organizes and gives free therapy equipment to families!  It’s amazing what this organization is doing and we’re so thankful for their help!  Another change since being on the steroids is the amount of cognitive activity Maddie’s able to handle while being in various positions.  Previously, sitting in her adaptive seat or being in her stander and keeping her core straight and head up were enough things for her brain to focus on that playing with toys at the same time was very difficult.  Toys were more of a laying-down-on-her-back type of activity.  However, now, it doesn’t seem to be a problem at all!  See her playing with her piano toy while in the stander.

Another major change since coming off of the steroids is Maddie’s expanded emotional range.  Prior to the steroids, she would smile and maybe have an occasional giggle, but she smiles daily now and even laughs out loud sometimes!  See video here!  Of course, along with the smiles are some vocal complaining as well as full out crying, but I still love it.  It’s just normal toddler behavior, right?  Her emotions were so muted before, so this change is one I’m most grateful for!

As you can tell so far in this post, we’ve noticed many changes with Maddie for the better since steroids, some back to baseline (e.g., tightness in right ankle) before her seizures got worse, and some even better than it was (e.g., use of right arm/hand).  However, Maddie’s vision hasn’t made much improvement after the steroids.  Her eyes are somewhat open now, but depending on the day, sometimes they just roll up and there’s not much alertness in her eyes.  It may be the lack of sleep (which I’ll talk about more below), but we are trying to figure out what’s going on and see if we can also get back on track with vision therapy.

As mentioned above, one of our major concerns right now is her inability to sleep well through the night.  She’ll stay asleep (with some tossing and turning) for 4-6 hours a night before being up for a few hours and then falling back asleep for another few.  Every night is different and it’s hard to find a pattern as to why (e.g. whether it’s her daytime routine or whether it’s neurological).  The inconsistency drives us crazy because we know her brain definitely needs the rest to help with her overall state.  We saw her neurologist a couple weeks ago and he mentioned trying Melatonin for a couple of weeks to see if that helps.  He said that it’ll help her fall asleep but won’t keep her asleep and that’s exactly what happened.  Maddie falls asleep soon after taking Melatonin in the evening, but will still wake up just after a couple of hours.  So far, it seems like her few hours of sleep are just moved up, but the overall amount of sleep hasn’t improved.  We’ve been on it for two weeks or so with an increase in dosage just this week, so we’ll keep at it and see if anything changes.

And to end, some pictures of all the holidays since the last post:

Cute Christmas pictures with Abby despite still being on steroids:

Christmas present for the family that she helped make during preschool:

Lunar New Year pictures!

With all the snow days, Abby has been to therapy and doctor appointments with Maddie and so now has started doing her own OT with Maddie!  All these ideas of hers!  I love that she wants to be involved 🙂  Below are pictures of her helping Maddie play a toy xylophone and throwing a plastic beach ball.

Sweet sisters!