A lot has happened over the last year and since we last wrote. In 2015, Ruby turned 6 years old and completed kindergarten, which was a very significant milestone for her. As significant as that is, Ruby was probably happier about being allowed to chew bubble gum for the first time (her reaction was worth sharing in the video below)! We celebrated Ruby’s 6th birthday along with Molly’s 4th at the lagoon over the summer with a 4th of July themed get together. They both love the 4th of July so much that they chose to have their birthday party share the quintessential summer theme.
Last day of kindergarten
Ruby and Molly before their birthday party
Fun with cousins after the birthday party
On Molly's birthday, July 29th, was bitter sweet, as we spent the day up in LA for a neurology appointment for Ruby. Ruby’s neurology appointments are not as frequent as they used to be, but we needed to have this one because of a new physical development in Ruby’s health. In May, we had noticed some issues with muscular spasticity that basically caused Ruby to walk with a limp and posture her right arm in a particular way, oddly enough, after assuming a very specific sitting position (after using the restroom). Naturally, this is not a position that is easily avoided! The posturing subsides after 10-15 minutes. Unfortunately, the episodes are not only result in physical hindrance, but actually result in some degree of discomfort for poor Ruby. At this appointment she was diagnosed with Dystonia, which is a rare neurological movement disorder that can occur after a brain injury like Ruby’s. The neurologist seemed hopeful that these episodes could be controlled with medication, which we began a few days later.
New medications bring their own set of challenges. We have tried a number of different ones since August, but to no avail. Several of them not only failed to control the episodes, but they were accompanied by very unpleasant side effects. One bright spot is that one of the medications came only in pill form, which allowed Ruby the success and subsequent pride of being grown-up enough to swallow a pill just like Mom and Dad! :) We even tried (are still trying) acupuncture, which Ruby is accustomed to enough that, at this point, she even requests it! Despite all this, unfortunately the Dystonia has continued to progress. As a result, we will be going in for an MRI tomorrow so that the neurologist can get a new look at Ruby’s brain (she hasn’t had one for over a year now). Hopefully, this will provide insights into the root cause of the dystonic episodes.
As all this has transpired, Ruby started 1st grade. Those of you with kids in school will understand that this transition is a significant one that comes with a significant increase in academic rigor and length of the school day. The good news is that, despite all of the unique challenges that she has faced (i.e. new medications, physical and mental challenges), her academic skills have continued to progress. Her strongest ability is probably reading, which has really taken off since the start of 1st grade. At the same time, though it is a struggle, she has really improved at arithmetic. We are very proud of her in both areas! We have also gotten both of the girls involved in water therapy (swim for Molly), gymnastics, and ballet, both because they really enjoy them and they are fantastic for physically challenging Ruby’s body. When a child is hemiplegic, like Ruby, it is critically important to encourage use of the neglected side of the body. Without doing this, the neglected side will inevitably develop improperly, resulting in increasingly marked physical differences with increasing age. One of the most satisfying results of these activities is that Ruby can now swim completely across the pool and Molly is just one the cusp of swimming without floaties herself. Between occupational and physical therapy, doctor appointments, the aforementioned physical activities, and school, Ruby is one extremely busy, hard-working 6-year-old.
While all this sounds like nothing but work, work, work all the time (yes, that is a Princess, Bride reference :) ), we have managed to find time for fun. Evidence is shown in the pictures and videos below. We are praying for a smooth day tomorrow and no negative changes in the MRI scan. MRI days are stressful for the whole family since, at Ruby's age, they require her to get an IV and be put to sleep. Still, we're confident that she'll do well.
Fun at the pumpkin patch
"I'm a real grown-up, Mom!"
Disneyland
Looking at Christmas lights
Ruby's rendition of Mom and Dad
Ruby accepted Jesus
Summer vacation
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?27 Can any one of you by worrying add a single hour to your life?
28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin.29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these.30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith?31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’32 For the pagans run after all these things, and your heavenly Father knows that you need them.33 But seek first his kingdom and his righteousness, and all these things will be given to you as well.34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
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.
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.
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.
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.
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.
