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.
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