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.

Ruby Can Ride A Bike!

The last time we wrote was back on October 1, 2012! These past three and a half months have flown by. We had a wonderful Christmas, our first where Ruby and Molly were both old enough to understand what's going on; well, Molly was mostly just completely enamored with Christmas decorations. Ruby is still walking around shouting, "Ho ho ho! Merry Christmas!" every once in a while.

 

The Weeks' and Denisons

Booth and Weeks kids

During the past three months we've moved (hopefully the last time for a while!), I started a new job, and Ruby's getting ready to start at her new school soon. Speaking of her new school, we should emphasize what a big deal this is, since it is largely as a result of her out-pacing the program! In fact, about a month ago Ruby underwent a number of cognitive assessments with the school district and passed all of them with flying colors. And get this: Ruby's speech is now completely age appropriate! We are finding ourselves amused and amazed all the time at the things she is saying, the stories she is telling, and the ideas she is expressing. You'll find a couple of nice songs below. Music to our ears! This is what we all prayed for. :)



For example, the other day Melissa asked, "Ruby, are you telling the truth?" to which Ruby replied,"I didn't tell a library." Another funny observation of Ruby's was when she took note of a woman with very dark, dramatic, drawn-on eyebrows. As she pointed at the woman, Ruby asked Melissa, "Mom, that lady a kitty cat?" When Melissa realized what she was talking about, she quickly whispered, "No, Ruby, she's not a kitty cat. Come on, we gotta go." Then Ruby looked right at the lady and said, "Meow! Bye-bye kitty cat!" Apparently her mom was unconvincing. :)

Physically, she's doing a great job. She continues to have some struggles with her right hand and arm, but she's accomplishing some incredible goals. Some examples are her ability to climb ladders at the playground, swing from horizontal bars, ride bikes (both tricycles and training wheels), and she's even managing to do large buttons by herself, which is quite the accomplishment. One of the videos below shows Ruby using her right hand and the Pincer grasp to eat Cheerios. Also, apparently jumping is an ability that is often lost with brain injuries like Ruby's. Not only can Ruby jump, but her physical therapist told Melissa today that Ruby actually jumps quite a bit better than most kids her age. How about that!?

Stabilizing the paper with her right hand as she colors

Finally, about two months ago we started a new anti-seizure medication because her seizures were still not completely under control. So far the new one seems to be working pretty well. We are just continuing to hope that she can remain seizure free for a two year span so that she doesn't have to be on any medications anymore. They have all kinds of bad side effects. This new one requires Ruby to have her blood drawn every couple of weeks. Believe it or not, this is not as bad as it might seem. Melissa's got it down to a science and Ruby is as brave as you could ever expect a 3-year-old to be, or anyone for that matter! Ruby is truly amazing.

God is good.

New Milestones

Today marks one year since Ruby's brain injury turned her life upside down. While she is not yet fully recovered, she just continues to make great strides. She's been seizure free for the last two months, with the exception of a one week hiccup as we weened one of her her medicines completely. It just turned out that she still needs a low dose. So we're right back on track as of about a week ago.

At the time that we were released from the hospital last December, the doctors told us that we should wait a year or so before putting Ruby into a "big girl bed" to keep her safe from any possible head injuries. Last night was the big night! Our little Ruby beamed in her new bed, which was little more than her same old crib with the front rail replaced by a toddler rail and some new sheets and quilt. We're so proud of her! She keeps telling Melissa things like, "Molly doesn't have a so cute new big girl bed. Only me!", "I have my own bed!" (which she told her teacher today), and "Oh, so cute!" She is just so excited about it. It's very cute. It's such a great milestone to see her reaching and it's so satisfying for us, as parents, to see her at this point. By the way, you might notice that those are some pretty great sentences that she's putting together these days. :)

A couple new samples of "Ruby sentences":

• "Mom, Mom! I need my glasses. It's too shiny out here."
• Regarding a young man smoking, "Mom, hey Mom. You see that boy? What he doin'? Ooo, he blowin' hot!"
• Song requests in the car, "What that song, Mommy? I don't . . . I don't . . . I don't like that song. I want a new one." To which Melissa replies, "it's the radio, Ruby."  ;)

She's back to parroting all kinds of words and phrases all the time. She's just doing a great job with her words! What a joy it is to get to hear what's going on in that little brain of hers again.

Ruby has another MRI next week. We don't expect to see anything remarkable, but that's actually a good outcome as a stable brain is a good thing. It's been quite the year for our family, but we didn't do it alone. We can never say thank you enough to all of our friends and family who have been with us throughout it all.

God is good.

Two thumbs up!

The last couple of months have been busy! It's been full of ups and downs, as has been the usual modus operandi since this whole thing began. But at the end of it all, we are very happy to report that Ruby is doing fantastically well. Ruby had another MRI a couple of weeks ago and the results were, quite simply, as good as we could ever have hoped. The neurologist happily reported that there has been no atrophy since the last MRI, which is fantastic considering the fact that she's been battling through 2-3 seizures per day for the last few months. Apparently, they are not doing much to delay her recovery. It is important to note here that this is quite unusual, or in other words, miraculous. As the doctor was examining Ruby he was surprised and impressed on several fronts. He was amazed by the strength with which she fought him for the reflex hammer with her right hand! He was also astonished by the quality of her gait as she ran (not walked) up and  down the halls. Based on what he saw in Ruby's exam, the doctor actually thinks that the left side of her brain must be recovering much of the function that was lost, despite the significant shrinkage from the original injury. Melissa and I left the appointment skipping (well, Melissa and Ruby, not me), hugging Ruby, and telling her how proud we are of her and all her hard work. Ruby is a miracle and just such a wonderful example of God's faithfulness, and brilliance for that matter. The brain is amazing. As we write this, we really cannot find the words to fully explain how grateful we are.

Here are a few of Ruby's new tricks. She can give you a double thumbs up. She can put on her own pants and shoes (the shirt is still a work in progress). She can grasp objects with her right hand. She can clap. Before bed, she puts Vaseline on her lips with her right index finger. Today she even used both hands to rub sunscreen on Mom and Dad's shoulders, for which she was quite proud. A couple of weeks ago, she helped Grandma Cathie to make pizza dough using both hands very effectively.

Grandma and Ruby making pizza dough

During the last few posts, we've reported new words that Ruby's learned here and there. This method of reporting is no longer feasible. She is saying everything! Her speech is so vastly improved and we are finding ourselves laughing often at the things she is saying, much like most parents do with the things their 3-year-old says. The last we heard, her speech therapist graded her at about a 2.5 year old level. We never lost our words, but we have none to explain how huge this is to us! A couple days ago, Melissa and Ruby were playing when Ruby stopped and said, "I have an idea!" as she ran off to find another toy. You may recall that on the night of her seizure Ruby went to sleep singing Twinkle, Twinkle Little Star. She can sing it better than ever. We often hear her singing the same song before bed and are filled with joy. She talks so much now that we are having to remind her when it's not time to talk/sing (i.e. at the dinner table, when Molly's sleeping, when we're praying, etc.).

Despite all the doctor and therapy appointments we attend, we've been enjoying as much of the summer as possible. Here's the proof. :)

Molly's 1st birthday

"I really don't see what all the fuss is about?"

Ruby at the beach

Ruby with Papa Tom and Daddy trying to teach her how to balance in the waves.

Ruby with her Papa Tom

On our way to Sea World!

Ruby and Molly's favorite attraction at Sea World

Ruby throwing hard looks at a nice stranger taking our picture for us

Ruby using her right arm to crawl through a tunnel

As we mentioned earlier, the past few months have been a struggle to get her seizures under control. We increase dosages, decrease dosages, add new medications, and take them away. Sometimes she would have a few days without seizures, but other weeks might be relatively full of them. By the way, when she has one now, she's able to tell us, "I had a seizure" (she can tell us because their simple partial seizures and she's conscious during). We are thrilled to report that after the most recent medication adjustment, Ruby has been seizure free for nearly a week. We and her therapists have noticed a marked progression in her recovery at the same time. We are so filled with hope. We can only imagine what she can accomplish if we can keep them away! Please pray that this is it for the seizures.

God is good all the time!

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.

It's been over 2 months!

I've been meaning to finish the post below for some time now, but there is new information to share as of this weekend. Ruby's epilepsy is worsening, which means that the medications that she's taking are not keeping her from having seizures. As of tonight, it has come to her needing to be admitted to the hospital on Monday. In the hospital they will try to pinpoint the area of origin for the seizures. Hopefully, Ruby's seizures can still be managed with medication, but this is seeming increasingly unlikely. The next step will be a special diet that will need to be implemented in the hospital. If that doesn't work, then we're at surgery (we're not sure exactly what that means yet). Please pray for Melissa, me, and the doctors to have wisdom in our decision-making. We trust that, no matter what is in store for Ruby in these coming weeks, that the Lord will be with us and that the outcome will be the best that it can be for Ruby. We're so grateful for all of the support out there. Thank you for the continued prayers.

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It's been two months since I last wrote and the problem we have now is that there's too much to say! There have been lots of ups and downs over these weeks, but overall Ruby just continues to improve. She's such an inspiring little person to Melissa and me . . . although she is also a very strong-willed little stinker sometimes too! :)  She's been doing a particularly good job trying to use her right hand lately. One example in particular is that she's been picking up her toothbrush with her right hand and putting toothpaste on all by herself. In fact, she's been able to unscrew the toothpaste cap by herself as well, that is except for when Dad screwed it on too tightly last time. Ruby tells me, "too tight, Daddy!" So she gets it after I loosen it for her. In summary, the spontaneity with which she is using her right hand is very encouraging.

Ruby's speech continues to improve as well. She's really starting to repeat things that we say spontaneously and there are so many new words that she can say. Some examples include, "nigh night", "I love you, Baby Molly", "let's roll". She's even gotten herself to the point where she can communicate well enough to bargain. A typical conversation that precedes any kind of food or treat goes something like this. "Ruby, would you like a mango?" To which she'd reply, "two. I-I want two." Then Mom says, "You can have one." Without any pause Ruby's shrewd counter offer, "five?" showing Melissa her five fingers. :) Melissa does such a good job getting words out of Ruby. They often spend time together right before bed. Melissa tells me that Ruby just opens up with new words and unbridled communication the whole time. It's very cute how much Ruby loves that special time with her mom.

All of this progress is coming as a result of a lot of hard work on Ruby's part. She remains in therapy 5 days a week, still for speech, occupational, and physical therapy. All of her therapists and teachers seem to be very pleased with her continued progress.

At the same time, controlling Ruby's seizure activity has been a constant struggle. In fact, a little over a month ago we actually had to take her to the emergency room early in the morning after a night of repeated waking. We realized that small seizures had been causing her to wake up throughout the night. It turned out that this was only the beginning to three long weeks in which Ruby was suffering from a very nasty virus whose longevity was only exacerbated by a continuous and difficult-to-control fever. She was subjected to a number of unpleasant medical procedures during this episode as we searched for a solution to her ailment - including a bone scan and numerous blood draws. As always, she handled these very well. In fact, Melissa was very pleased to report that Ruby did not even cry during the last blood draw! Very impressive for a 2-year old. The phlebotomist said that he had never witnessed a little kid who did not cry while having his blood drawn. Finally, after over three weeks, her fever subsided as we were able to chock the whole thing up to a simple virus that lasted longer than most. Throughout this time and since then we've been dealing with changing medications and dosages to try and get the seizures under control. It's very stressful to say the least, but we're starting to get used to things. Nevertheless, for the most part, Ruby acts happy and healthy despite the seizure activity. Apparently, her brand of seizures is a very difficult brand to control, but we'll get there. Again, she continues to improve despite these difficulties.

Ruby as happy as a clam - playing in the sand and eating popcorn!

We've taken Ruby to the beach a few times since she's been relatively healthy again. As she always has been since long before the seizure, Ruby is madly in love with the beach. We asked her, "did you have fun at the beach?" Ruby kept saying, "more, more, more beach, eease!" It is difficult to explain how significant our beach trips have been to us, and for me in particular, since moving back to the Irvine area. Back when I was still in school, Ruby and I often went on father-daughter trips to the beach. I realize that most children enjoy the beach, but it's an understatement to say that Ruby enjoys the beach - Ruby thrives at the beach! She's about as free and careless as a person can be when she's there and I love being there with her.

We live in a fallen world, but God is good all the time.

Ruby and her friend Max eating popcorn at the beach

Ruby and Max looking at sand crabs

Ruby in her Easter dress

Molly in her Easter dress

Easter picture

3/4/2012

I am happy to report that Ruby is continuing to improve all the time. While the last post I wrote was riddled with emotion and worry, let me declare that this post - and indeed Ruby's entire story - will be one of hope. Although there are moments, and even periods, of uncertainty, we hold fast to what we know about our Creator: that He is just and good. He is faithful to those who love Him. And He has been faithful to us. I do not say that He has been faithful because Ruby is fully recovered or because our lives have calmed after the storm. He is faithful in that He alone has sustained Ruby and our family through the most tumultuous of times. He has sustained us through wonderful friends and family, sunny days made sunnier by the care-free play of a very remarkable little girl, and the hope that he will never leave nor forsake us.

It is a powerful thing to reflect on how far Ruby has come. Less than 5 months ago our precious little "chica" was rendered speechless and hemiplegic. Today she chases her father in a field. Today she climbs upon a stool to help her mom stir the cookie dough. Today she signs and says, "thank you." What a wonderful gift it is to watch out beautiful two and a half year old climb to the highest level of the playground and slide down the tallest slide.

Over the last couple of months, Ruby has been settling into a busy therapy schedule: Monday through Friday! We are constantly hearing from all of her therapists about how determined Ruby is and how much this quality is going to help her in her recovery. A lot has happened during the last few months, including many of Ruby's "firsts".

We took her on her first trip to Disneyland (and Molly too). Ruby's favorite ride was the Little Mermaid ride and she was also pretty happy about her old friend, Max, meeting us there, too. If we're being completely honest with ourselves though, we might say that her favorite part of the day was on the bus ride back to the parking lot. The bus driver sang "The Wheels on the Bus" and "Twinkle, Twinkle Little Star", on an otherwise empty bus, just for Ruby. He was a very nice fellow and made Ruby's first bus ride memorable for everyone.

Molly sister wearing a classic expression

Ruby and her peeps

Ruby and Mama with her mouse ears

Dumbo with the whole family

The video shows Ruby's reaction to entering the Small World tunnel for the first time.  :)

We are thrilled that Ruby has gotten the opportunity to attend a therapeutic preschool very near our home twice a week. It has been so good for her. She does all kinds of typical preschool activities there, but with physical, occupational, and especially speech therapy mixed in. It is wonderful! There really are no words to express what a blessing this school has been. It is definitely helping Ruby in a big way.

Ruby and Mama before the first day of her new school

Ruby showing off her special new backpack!
She picked it out herself because it has a dog on it.

Another first is that Mom painted Ruby's nails for the first time. One morning Ruby noticed "Mama's" painted nails for the first time, so Melissa went ahead and gave Ruby some pretty nails too.

Ruby had to have a 24-hour ambulatory EEG, which essentially means that she had to have a bunch of electronically-conducting gel, leads, and wire terminal connected to her head and wrapped up into a neat gauze turban. We call it the "crazy hat"! To say that Ruby was a good sport is an understatement. She's had EEGs before, but never for this long. She did such a great job!

Molly, Daddy, and Ruby with her  crazy hat on. :)

And a couple pictures of our lovely little Molly Sister for the road . . .

We are thrilled to be getting settled into a routine and really feeling like a family again.  :)