Hi Everyone,

The below blog was written a few weeks ago (when things were starting to get crazy with COVID-19) and given how much has changed in the past few weeks, we’ll soon follow with another.  Just wanted to post as this is already delayed 🙂

Maddie spent the entire month of Feb on her regimen of steroids, which was prescribed by the neurologist to calm some of the baseline electrical activity in her brain.  Last winter we did a similar treatment and that seemed to reset her seizure activity for quite a few months afterwards.  We are hoping for the same results.

However, the biggest side effect of the steroids is lethargy and drowsiness.  Maddie usually doesn’t tolerate blankets, hats, gloves, socks, and even shirts.  However, with the medication incapacitating her, Abby and Bill have taken advantage and included Maddie in some activities that she would otherwise not tolerate. Here’s a picture of Maddie in her “throne” but she ended up digging herself down into the pillows and getting stuck.

Not quite happy about dad putting on these accouterments, but tolerating them just long enough to snap a few pictures.

Maybe if you swing me first.  That works better.

Apparently this was fine.

She was not interested in participating in therapy very much.  Here she is on a tire swing that was to practice core muscles.

After 4 weeks at a high dose, we started a 2 week stepped wean where we dropped the dosage every week.  She has started to come out of her medicated haze and is starting to smile more – but still a bit drowsy.

Therapy has been a bit tough with all the drowsiness, but the OT at Inova found a swing that would help with Maddie’s core control when she sat up.  It had pads on the side in case she fell over and also turned so you could swing her side to side or front to bad, thereby forcing her to control her balance using different muscles.  She seemed to like it a lot and was able to sit up straight despite a bit of jolting and sudden direction turns.

Bill took some pictures and installed a similar one in the basement so Maddie can now have swing therapy any day she wants.  She can tolerate about 25-30 mins in the swing sitting up, though she has discovered that laying down is easier so we have to keep “encouraging” her to sit up straight.

To make it more interesting, was used a box fan and simulated swinging outside in the windy backyard.  She seemed to like it, but after a while realized she was still in her therapy swing and was back to pouting.

As for the steroid regime, it seems to be having the intended effect.  Her seizures have become much stronger and persistent – lasting over 4 minutes with convulsing and multiple twitches.  These seem to occur during the evening right before or after she’s fallen asleep.  They’ve gradually decreased in frequency as the steroids kicked in and we’re down to about one a week from a high of almost daily towards the beginning of the month. We are hoping that the steroids will help her control them now that we are done with the last dose!

While we were on the steroids, we continued to go to OT at Inova each week, but we cancelled this week’s session and will probably do so for the foreseeable future.

This week, we also had to do an EEG, which was at the neurologist’s office.  It is usually a bustling place, but we found it almost empty.  We were extra careful with not touching anything and constantly sanitizing our hands.  Maddie did very well and we are waiting for the results to be sent to the doctors for review.

In terms of personal updates, we celebrated Jen’s birthday in Feb and everyone enjoyed spending time together.  It was a good break from the frantic month and we spent a wonderful day eating until our bellies burst.

Thank you all for your continued prayers and love.  We especially ask for your support this month given the risks associated with COVID-19 and those with pre-existing conditions or are immuno-compromised.  We are taking all necessary precautions and have made preparations to stay away from high risk areas for as long as possible.  We don’t know how it will impact someone with as complicated a medical history as Maddie and we ask for your prayers to help protect her.