September 2016 Ruby Update

Our summer was very busy! And there is much news to report. :)

First, we want to thank each and every one of you who responded so generously to the fund raisers that we held back in May to raise money for Ruby to receive horse therapy (hippotherapy) at the Shea Center. Ruby officially began her program in early July and we couldn’t be more pleased with the results that we’ve seen already. After a few sessions, Ruby’s therapist decided on the best horse for Ruby. Her horse's name is Alec. They chose Alec for Ruby because his gait causes the most side-to-side movement, which is optimal for strengthening Ruby's core. She has gotten remarkably stronger during the past few weeks as a direct result of this therapy. Not only does she ride Alec, but they also have Ruby perform tasks like taking of the horse with feeding, brushing, washing, and even painting! She loves going and we ware so grateful that everyone has come along side us to see this come to fruition.

 
Over the summer, we also tried a new medication to try to control Ruby’s dystonia. Unfortunately, the side effects of the medication were negative to the point of rendering the exercise counterproductive. So, Ruby is still experiencing dystonic episodes, but we are very glad to be rid of the medication’s side effects. We’re not sure, at this point, what our next step will be on this front, but, for now, managing the dystonia itself seems to be the best path forward.
We can hardly believe that Ruby is now 7 years old! We celebrated her 7th and Molly’s 5th birthday with friends, family, and one very special guest this summer.

 
We had such a fun celebration. Thank you, Ariel, for helping to make their birthday so special.
Our most exciting news to report is that, after nearly 5 years on anti-seizure medication three time a day, Ruby’s brain is ready to do without it! Ruby had another EEG, which is used to evaluate the electrical activity in the brain. After interpreting her EEG, Ruby’s neurologist happily reported that he found “no abnormal activity indicating a tendency towards seizures”. Thank you, Jesus, for calming Ruby’s brain! We started the weaning process last week and should be done with the entire process in approximately 8 weeks. While we’re excited about having reached this milestone, of course, there is some trepidation associated with this change. Please join us in praying that the Lord continues to protect her brain from any and all seizure activity.
As you can see in the EEG pictures below, we do our best to make it fun (we got ice cream afterwards), but as she’s getting older Ruby’s seeming to be more annoyed with getting her “hat” on a little more. This time she looked at herself in the mirror and said, “ugh… this hat is not so beautiful.” That said, as usual, she was mostly very a good sport.

 
Finally, Ruby started 2nd grade and Molly started Kindergarten. This was a very big moment for them as they have been longing to walk to school together for some time now! They’re so glad to both be Meadow Park Mustangs. :)

Thank you all for your continued prayers and support! God is good all the time!

May 2016 - MRI, Dystonia, and Hippotherapy

We just wanted to post a quick update on the results of Ruby's MRI and Dystonia. The MRI didn't show any significant change in Ruby's brain, which is good, but it didn't help us to understand why her Dystonia has developed. Since then, we visited a movement disorder specialist who confirmed that Ruby does have Dystonia. The main takeaway from this visit though is that there are two types of Dystonia, type 1 and type 2. Ruby has type 2. Basically, if you had to choose, you'd want to choose type 2 Dystonia, which tends not to be progressive. There is also another medicine that we are going to try that the doctor says is very effective in children against type 2 Dystonia. So, praise the Lord for this!

Since her seizure, we have worked diligently to rehabilitate Ruby through prayer, neurology appointments, physical therapy, occupational therapy, speech therapy, and constant encouragement. We also have Ruby participating in gymnastics, aquatic therapy, and ballet, which will all help her to develop the right side of her body so that it keeps up with the left (the brain’s tendency in a case like Ruby’s is to ignore the impaired muscles). It is sobering to recall that, over the past 4 years, Ruby has relearned to walk, run, speak, use her right arm and hand, and even swim! She has been seizure-free for several years now. Her physical and mental abilities today exceed many of the expectations of her primary neurologist, for which credit is due to the Lord Jesus Christ. We are so proud of how hard she has worked and how far she has come.

That said, Ruby continues to struggle with her cognitive and physical abilities and we are steadfastly determined to provide her with every opportunity to have the best life she can have. While we have done and continue to use traditional methods of rehabilitation, we have learned about hippotherapy, or physical/occupational therapy with the aid of a horse. Hippotherapy is a comprehensive treatment strategy which has been shown to help improve muscle strength and flexibility, coordination and balance, language and communication skills, ability to process information, self-confidence, and social skills – all of which will help Ruby tremendously. To that end, treating Ruby at The Shea Center in San Juan Capistrano, CA (www.sheacenter.org) is a wonderful opportunity to help her continue to improve her motor and cognitive skills. Unfortunately, the therapy is very expensive (~$550 per month for one session per week) and not covered by our medical insurance. In order to make this therapy possible for Ruby, Melissa's wonderful Aunt Julie has arranged a fundraiser at California Pizza Kitchen in Cerritos, Irvine, and Temecula on May 22-24. Just show the flier below to your server and 20% of your check will go towards this therapy for Ruby.

On behalf of Ruby's entire family, we express our sincere gratitude for your support.

You can also download the pdf of the flier here: https://drive.google.com/file/d/0B2cd3F3PJQtwV1hqd0dWQjN2RE0/view?usp=sharing

Here are some recent pictures, just for fun. :)

We really enjoyed watching Ruby at her 1st grade music show. Music class is one of her favorites. You can see she really gets a kick out of it. :)

January 18, 2016

Thank you all for your prayers and support. In short, Ruby absolutely killed it today! We're not just proud, doting parents, either. She really did. She was as brave as she's ever been. She even asked before bed, “Mom, when are we going to take a picture of my head again… because that jello was delish!” :) She is just such a positive little girl, because she said that despite needing to be “poked” twice to get her IV in and, of course, needing to wake up from anesthesia (though the waking up part is probably harder on us than her!). It didn't hurt that she was also looking forward to some delicious In-N-Out with a special strawberry shake. It was also very special to her to have her Uncle Joey there with her as well. Now we just wait to hear the results. Thank you all again. Glory to God. :)

Uncle Joey and Ruby

January 17, 2016

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.

Matthew 6:25-34

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.