Ruby Update

First, let me apologize for the tardiness of my post-hospital-visit post.

It is difficult to call Ruby's last hospital visit, for her 4-day in-patient EEG, a success. What we did learn, however, is that her seizures are not easily detected by EEG. The goal of the stay was to keep Ruby on video for as much of the time as possible, which unfortunately meant keeping her in bed for most of our stay. A couple of seizures were caught on camera, but despite the agreement between parents and doctors alike that what we were seeing were indeed seizures, the electrical data from the EEG never revealed the seizures' epicenters. Unfortunately, it was the ultimate goal of the hospital stay to locate the epicenter of Ruby's seizures. Although this was not determined, the fact that the electrical activity is not detectable by EEG may prove to be an important clue in the end. Time will tell. Apparently, this is quite unusual . . . which is beginning to be the norm for our little Ruby!

While the stay was not all fun and games, we all tried to make the best of it. Ruby was a trooper, as always. She's getting so used to doing these things that she actually thanked the EEG techs for putting her hat on for her! It was very cute. Here is Ruby and her little sister, who'd come for a visit.

Ruby and Molly in Ruby's bed at the hospital. Ruby's all hooked up, as you can see.

Here is another picture of the cell mates.

The worst part of EEGs is when they have to come off, so Melissa always makes it as fun as possible.

Ruby getting her hat taken off.

I realize that this may not look like Ruby's having fun, but she had a special lollipop or ring pop to occupy her while having her "hat" removed. This was followed by having fun looking at Ruby's crazy hair.  :)  Ruby gets a kick out of this.

Ruby's crazy hair!

Whoa! That's quite a do!

So, after all that, we're still stuck with testing new medications and medication levels, but we're learning that this is pretty much the norm for epileptic patients. With all epileptics, getting seizures under control is vital to allowing the brain to develop, or in Ruby's case, both develop and recover. Despite her seizures not being completely under control, she continues to defy the odds.

Melissa recently attended a meeting with therapists who had assessed Ruby's progress and remaining needs/goals. We were very impacted by the report that Melissa brought back. The therapist told Melissa about how fascinating Ruby's case is for her. The reason: Ruby is doing so many things that, when her case is judged on paper, they conclude she should not be doing. What a miracle she is! One thing that they marvel at in particular is how well she's been able to learn to use her right hand again. Just today at the beach Ruby wanted to carry both buckets of water - one with each hand! And she did! She is doing so well! It's difficult to explain with words. But it's not just her hand that's amazing. She's beginning to really string sentences together! One thing that is really poignant for Melissa and me is how well she's suddenly been able to sing "Twinkle, Twinkle Little Star" (if you'll recall, this is the last song she sang before her big seizure). "Up above" has long been a phrase of the song that has remained with her, but it has also tended to be the only phrase she uses in singing the tune. But just the other night, with only a minimal amount of coaching, her brain was ready to let the words flow, for the most part, in the right sequence. Again, the joy is difficult to explain here, I'm sure. But the progress is palpable for us. God is great!

In the mean time, Ruby's had some fun times with her friend Max and her cousin Jay Jay.

Ruby and her friend Max eating lunch together.

Ruby and her cousin Jaden eating dinner together.

We also had a big celebration for Ruby's 3rd birthday, as I'm sure many of you who read this know. It was truly a wonderful blessing to gather with family and friends, all who care about Ruby and us so much, and who have all been so supportive of us during this time. We are so grateful to all of you. And we had such a great time. Ruby did too. She called it a "happy day".  :)

Dipping their feet in the pool.

Ruby with her "juicy"

God is good all the time.