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.  :)

01/18/2012 Appeal for Prayer

A couple of weeks ago Ruby had another MRI of her brain. The neurologist called last week to give us the results of the MRI. Back when Ruby was in the hospital, there was question as to whether or not the left side of Ruby's brain was temporarily or permanently damaged. If the damage was only temporary - a result of cell inflammation, but not cell death - then the cells should have recovered and one would expect the neural pathways to eventually reconnect. This process is somewhat like what a baby goes through in their brain development. So this would mean that she would merely need to relearn things that she knew before by reconnecting the neural pathways in the same part of the brain that was used for the old function. Permanently damaged cells are dead and will never work again. In this case, other parts of the brain need to take over for the damaged parts in order for the patient to regain any function that was lost. Unfortunately, the left side of Ruby's brain has suffered permanent damage. It is smaller than it used to be. There is scarring that will never be gone. The left hemisphere of Ruby's brain will never be the same again.

The reason I am writing this post it to request that everyone who reads it send up a prayer for Ruby. While she has continued to improve slowly, it is now very clear that the right hemisphere is going to have to pick up a lot of the slack, if not all of the slack. This is especially daunting because her speech center, which is on the left side, seems to have been hit the hardest. I believe there is still hope that her neural pathways may be able to find ways around the scar tissue, but nobody knows for sure. Melissa and I are so desperate for her to talk again - the way she used to talk. As I'm writing this I'm thinking,"who cares?" God is not constrained by neural pathways and scar tissue. Please pray that He heals her brain whichever way He wants to. Make the scar tissue vanish. Make the right side handle speech the way the left side used to handle speech. I don't care how you do it, Lord. Please, please, please heal our little girl.

Fun Video

Melissa and I were looking through pictures and videos yesterday evening and found something too good not to post. This is a video of Ruby almost exactly a week before her seizure. This is where we're heading, God willing . . . and minus the parent-sanctioned dog terrorizing.  :)  We pray she gets back to her funny talking.

01/08/2012

It has been quite some time since I last found the time to write. Oddly enough, things have been seemingly even more hectic after being out of the hospital. Ruby is continuing to make progress since her discharge from the hospital, even without any formal therapy (we knew that there would be an unavoidable therapy gap before leaving the hospital). To make a long story short, there is no question that she loves being home.

The day we left the hospital, I began to fold up Ruby's blankets and prepare her crib for our departure. I was surprised to see Ruby get a little bit upset. I told her that we were going to go home and that she would get to sleep in her own bed again. To this she replied, undeterred, "I want that one!" as she pointed in the direction of her hospital bed. Nevertheless, we finally got moved into our new place a couple of days later. When it came time for bed, Ruby could not wait to lie in her old crib. The next morning, she was absolutely delighted to come into Mom and Dad's bed . . . with both Mom and Dad there! It is difficult to describe with words, but we could just see her beaming as she turned to Mom and kissed her, then turned to Dad and kissed me, then turned to Mom and kissed her, and she went on and on like that several times. She wore a big goofy smile on her face the entire time. It is no exaggeration to say that Ruby glowed in that first day with all of us together again in our new home.

Santa reads a book to the kids on Christmas Eve.

Christmas Eve

Christmas was nice. Ruby thinks that all wrapped gifts belong to her.  :)  She sat with Santa for the first time on Christmas Eve. He scared her a little bit when he would laugh, "ho, ho, ho!" So she coped with it by telling Santa to "shh, shh, shh!" Again, it's wonderful to be back together as a family.

She's been improving little by little, despite not having started any therapy yet. We are relieved to finally have her starting this week. Her walking has really improved, even since being out of the hospital. She's walking pretty normally now. You certainly wouldn't know that she couldn't walk on her own just two months ago. She still doesn't use her right hand for anything. Unfortunately, she will do just about anything to avoid having to use it. Melissa and I can get her to do some things with a significant amount of encouragement, but this is hopefully where the occupational therapy will help her most. When we met with Ruby's new therapist last week, she seemed very positive about Ruby's potential.

The doctors and therapists have always said that speech would take the longest to come back. While we do not have any guaranty that it will ever come back fully, we have seen some encouraging signs over the last 4 weeks. New words include "hi", "up", and "down". Melissa first heard Ruby say 'hi" when they were in the car together. While in the car last week, Melissa was surprised to hear Ruby saying "hi . . . hi . . . hi!" When Melissa turned around, Ruby was holding her stuffed lion and using its paw to wave to the passing cars. Even if her speech doesn't come back fully, she's also learned new signs from American Sign Language. She really seems like she's as bright as she ever was minus the speech problem, which means that she's not having any trouble comprehending and learning. Again, God willing, Ruby's speech neurons will continue to reconnect and/or her brain will just find another way.

This verse makes too much sense not to quote here. Our God is a God of great promises. I love Him for that.

"I am the Lord thy God, which brought thee out of the land of Egypt: open thy mouth wide, and I will fill it." ~Psalm 81:10