Hi Everyone,

Maddie’s seizures have continued and not seen much improvement since our last post.  We’ve been testing new medications at different dosages for many weeks with no success.  Maddie still has multiple seizures a day and has various types now instead of just the original twitching (pre-March).  Without using obscure medical terms, I would describe them as single or multiple jerks, sometimes with convulsing, stiffness and/or frowning/crying.  Since we haven’t seen much improvement, I essentially speak to the neurologist weekly to change dosages and discuss next steps.  Just last week, we stopped one medication and are starting another.  Please pray that we will find the right one for Maddie so this trial and error can be over!

Somehow (surprisingly), we’ve seen some improvement in Maddie’s alertness levels!  As mentioned in the last post, her vision seemed to have taken a backseat with therapies, but in the past few weeks, we’re seeing it come back again!  She’s back to enjoying looking and smiling at her lighted toys and mylar balloons.  See below for some pictures.

With the alertness also comes more proactive playing with her toys.  She especially loves the below musical drums.  She even recognizes the music!

Our ability to “play” with her has improved and we can trigger responses to different noises!  See video below for her smiling because Bill is tapping the car window glass 🙂

Her sitting has also continued to improve as can be seen below.  Bill and Abby love building pillow thrones for her on the sofa.  A nice surprise while I was going through and picking pictures for this post was noticing that we have a lot more pictures of Maddie upright rather than laying down.  It shows how much she’s come in terms of core and neck strength!

We’ve also tried more standing on her own (without the stander), but it takes a lot of focus/strength so more often than not, she’ll collapse and not even try.  However, there are times when she does!  See below for a physical therapy session when she was doing really well 🙂

Since it’s summertime, Abby’s been splitting time between camps and at home so Maddie’s seen a lot more of her in recent weeks than during the school year.  Maddie can recognize Abby’s voice and presence in the room (i.e., she’ll move her arms around excitedly or smile), which is so heartwarming.  This is not surprising though because prior to her brain surgery, Maddie absolutely adored Abby.  During her recovery from the heart surgeries and being on life support, the only thing that would calm her down were videos of Abby.  It was so obvious that the ICU nurses jokingly asked for copies of the videos so they could use them to calm Maddie down when she cried!  With Abby being at home more now, she’s really become an expert on taking care of Maddie… the types of toys she likes, what to do during her seizures, how to call her out of pre-seizures, etc.  It’s really amazing to watch them grow together and we’re so blessed that Abby loves her so much and wants to take care of her!

Abby showing Maddie a new birthday toy that flashes lights (with no noises), which are perfect for vision therapy!

Abby feeding Maddie….

Helping her count/feel the ladybugs in “10 Little Ladybugs” during a home therapy session!

Playing boardgames together… we even helped Maddie roll the die during her turn!

Snuggling before bedtime…

Sweetness!

And to end, some more pictures!!

Sitting up in a picture with me (not very many out there of the two of us as I’m usually the one snapping pictures!)

Bedtime stories with Bill…

Yummy finger…

Napping at the pool during Abby’s swim lessons…

 

Peanut butter face!

Father’s Day

Abby’s 6th birthday!

July 4^th