Hi everyone,

It’s been a while since we’ve written a blog and a lot has happened in the meantime.  Thanksgiving, Christmas, New Year’s and Chinese New Year have all passed now and we have lots of updates!

Maddie’s Physical Improvements

Maddie has improved in many ways these few months.  She’s able to sit up much straighter and for longer.  She’s also much more well practiced at taking off her shirt, which has escalated so bad that Bill now puts Abby’s old swimsuit tops over her shirt to prevent her from slipping it off the top of her head.  Maddie also has improved her balance while standing without being supported by the stander.  She’s able to stand up for 30+ seconds while just leaning on Bill’s leg while her hands are being held up.  She has not been able to make much improvement on walking, despite getting a new, larger walker.  But hopefully with the new ability to balance, she can translate that into walking form.

Look at that balance (see?  not kidding about the swimsuit top)!

Here is another picture of her standing up, but with some more support.

We turned around to set up a new toy at PT one day and she took the opportunity to remove her shirt.

Bill built a new taller stool for her to practice sitting on.  She’s quite happy with the new support since the shorter one left her knees higher than her waist.

Despite Bill’s best efforts to build a new containment unit for Maddie, she was able to find the weak spot and push her way out.  Here’s the aftermath of one set up (and yes, she also disrobed in protest to her confinement).

Here we tried with a bouncy pool noodle and she Houdini’ed her way out of it.

And this one didn’t work either:

One very useful development has been her sitting up during hair drying after bathtime.  She used to lay down and we’d have to hold her head up or leave her hair half wet.  Now she perches on the end of her changing table and waits for us to finish drying her hair.  We are still nervous that she might fall over and hit her head on something, but so far, she’s been very aware of her surroundings and is pretty stable despite being at counter height.

Maddie sitting on a yoga ball to practice balancing and she heard Jen’s voice.

All tuckered out after a session with the teacher.

Maddie’s New Bed

Since the last update, Maddie’s ability to sit up and arch her back has consistently improved.  This has been a blessing but also has increased our fear of her actually hurting herself.  This is especially true with her bed, which has a railing, but not high enough if she here to sit on her knees.

Here she is on our night cam trying to escape.

Bill put up netting while we waited for insurance to approve the new top fencing for the bed.  She found the new barrier and actively tried to push between the net at the top of the bed.

Luckily, we didn’t have to reinforce our homemade barrier more before the new bed parts arrived!  She now has a fully enclosed structure.

It’s so large that even Abby gets to play with her each night prior to bedtime.

Eyesight improving

Another area of improvement has been Maddie’s eyesight.  Just in the recent few weeks, we’ve noticed that she was opening her mouth more accurately without sound or physical prompting.  Bill became suspicious that she was able to see more than before when he tested it by waiting random intervals (to see if she was timing the mouthfuls), using an empty spoon (to see if it was smell), and wagging his finger (to see if she saw the shiny silver spoon better).  And in most cases, she was able to turn her eyes and focus on the item, then open her mouth.

Video of Maddie’s dinner while Bill was testing her ability to see the spoonfuls of food.  Please ignore piano practice in the background (i.e., sound is not necessary to view the video) 🙂

During last week’s vision therapy session from the school teacher, she was able to see a toy and smile, indicating she actually caught a glimpse and processed the visual cue.  This is consistent with before, but we are seeing her eyes actually move towards the source of visual and then respond.  We are heartened by this improvement and will continue doing more vision therapy between teacher visits as long as her seizures and medicine side effects allow it.

Seizure control struggles

Maddie’s seizures, which used to be single jerks, continued to increase in frequency until the past few weeks, when the frequency decreased, but each one’s duration and severity have increased many fold.  The biggest change has been clusters of twitches where her previous were just single jerks or even just a turn of the head.  These are reminiscent of the ones we had in late 2018 prior to doing a stint of steroids.  In the fall, the neurologist had actually proposed changing medications, but with the new cluster seizures and after a 1 hr EEG, he determined that another round of steroids like last year may be more effective.

Here she is wrapped up with the 25+ contacts glued to her head.  Now that she’s more aware of her surroundings, she becomes emotional when she doesn’t like something – and people touching her hair is one of her least liked things.

We just started the 6-week stint of steroids last week and over the last 48 hours she’s only had 1 seizure.  Side effects are heartburn and lethargy, but we’ve also noticed a bit of constipation.  Please pray for better seizure control and relief from the side effects.

 

Fun Picture Time!

One of Maddie’s favorite activities was sitting in a swing but with the change in weather, her outdoor swing was inaccessible.  With a little frame, Maddie now has her swing back!

Over the holidays, we started boarding MooMoo, Bill’s parents’ cat who is very friendly.  She is in the basement, but occasionally she’ll slip out and come visit.  Maddie got to pet her and of course she wanted to explore with her mouth.

The girls with Bill at church during Christmas week service.

January 1, 2020 – New Year’s Day!

Enjoying the mild winter weather with walks outside in January!

Celebrating Bill’s birthday!

Chinese New Year’s Eve dinner with the sisters wearing red!

and to end… Chinese New Year’s Day, in red again!