10/04/2014 Update

The biggest news as of late is that Ruby has started kindergarten! She anticipated this new venture with great enthusiasm all summer. She (and Molly) would constantly comment every time we drove past the school, usually saying something excitedly like, "that's where I'm going to go to kindergarten, Mom!?" As a side note, Molly really can't wait to get started in school herself. The morning of the first day was so much fun. Ruby was excited and the rest of us were so excited for her. She shot out of bed that morning, ready for the day and while Mom, Dad, and Molly all walked on the way, Ruby ran! One of the girls in Ruby's class, who we met that morning, was somewhat apprehensive about the whole kindergarten thing. As she dutifully kept her composure, even in spite of her tears welling up, we were so proud of our happy little Ruby, who took her new friend by the hand, rubbed her back, and encouraged her as they walked into their new class that morning. This all epitomized the happy-go-lucky and empathetic Ruby we love so much!

Some of her favorite things to do at school are go to the library, the computer lab, recite the flag salute, and wear green & blue on spirit days. We're learning to read and write. Of course, writing is somewhat challenging, but she's really making good progress and her confidence is beginning to snowball. She can write her name consistently and has even learned to write Molly's name as well. She's learned to write many of the letters in the alphabet and is doing a good job with reading several words: so far we have "the", "I", "see", and "Sam". I was especially proud of the way she sounded out "Sam" the other night!

The girls at their dance recital.

Ruby is also now completely weaned from one of her anti-seizure medications. It has been about 6 weeks so far. This has been somewhat challenging, as there are definitely side effects associated with withdrawing from these types of medications. But, as usual, Ruby's gotten through all of it. So far so good, but we could always use prayers that she remains seizure-free and that we're able to establish a healthy equilibrium - even once all the medications are (hopefully) completely gone. We will be doing another EEG within the next couple of weeks to make sure that no episodes are occurring while she sleeps, which is when many epileptic episodes tend to occur in general. Basically, the hope is that there is still no sign of epileptic tendencies, let alone seizure activity.

"Bath tubs" on the lawn

One of the biggest challenges in Ruby's young life is that her schedule is so full. In addition to kindergarten, she continues to benefit from occupational, physical, and speech therapy. We've also been doing gymnastics, which is a great way to get a little extra PT in. One of the newest, and possibly Ruby's favorite, activities has been her water therapy, which she does every Thursday at a local aquatic center. There she works on balancing, strengthening her right arm/hand, and, of course, continuing to learn to swim. The last couple weeks, she's even been diving through hula-hoops, as shown in the videos below. She is so proud of the things she has learned to do in the pool and is very confident in the water now, though complete swimming still eludes her. She'll get there. It's got to be tough when you don't have great control of one arm! For the second video, just skip to the 1:00 minute point.

To the Lord be the glory.

Big News For Ruby

It has been a very long time since we last wrote, but yesterday was such a banner day that we are compelled to share it.

Melissa called me at work yesterday and asked, "Do you want to hear some good news?" She proceeded to tell me that Ruby's neurologist had finished reviewing her latest EEG. The verdict: Ruby's brain no longer shows any signs of being at risk for seizures and we can begin to ween her from her two anti-seizure medications! While it doesn't really affect her recovery, as it has been a very long time since she's had any seizures, it is still an answer to all of our prayers! It certainly is a wonderful milestone for us to have reached on this two and a half year journey.

Ruby getting her latest EEG electrodes on.

"The hat"

In the meantime, Ruby has continued to work hard in her speech, occupational, and physical therapies. At this point, her speech is typical for a soon-to-be five-year-old. And speaking of being five, this fall Ruby is all set to start kindergarten in a typical class. We're so proud of how much she's accomplished to get there. She has continued to improve the strength of both her right arm and leg. In fact, as you'll see in the videos below, she is managing to ride scooters, bikes, and even catch balls!

We just started swimming lessons as well. We are very optimistic that she will be swimming on her own in no time.

It has been so fun watching Ruby continue to grow in her big sister role, as well. Ruby and Molly have really become the best of friends. No doubt, Molly sure looks up to her sister and wants to be just like her. Melissa and I find this to be a particularly wonderful blessing as we both remember, quite vividly, praying constantly that these two would be able to share in this relationship.

This picture is indicative of what we just love about Ruby. Even after all of this stuff - therapy, medical tests, doctors appointments, and preschool nearly always five days a week - Ruby is easily one of the happiest people around. She even still wakes up - early in the morning - singing and ready for each day.

God is good.