Ruby Marie Weeks: May 2012

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.