I have debated on when to post or if ever to post this kind of information. I am well aware that most people are quite overwhelmed by their own lives and certainly do not need to feel weighed down by the challenges of someone else's. If you are like us, by the time you leave church on any given Sunday, you are so inundated with prayer requests that the bulletin, or list often gets little more attention than the momentary pray said over the trash compactor while cleaning out the church bag. That being said, I promised myself before beginning this little venture that the primary purpose of the blog was to record our family details for us to look back on and this certainly meets that promise.
We knew L had long term health issues before she came home. We received a firm diagnosis of cerebral palsey in April. This was of course expected, but we were then, and continue now to sort out what are the effects of CP and what are the results of being placed in a room for disabled children in an orphanage and barely talked to or worked with the first 2 years of her life. We know without a doubt that God placed her in our family. When asked if we could deal with what lay ahead, we have truthfully answered "we can just take one day at a time." If I spent much time looking at how tall the mountain is we still need to climb, or how hard the trail will be, I would certainly melt into a puddle of tears. We plain and simply do not have time for that. And thus our approach, so far, has been much as it would be when confronted with the challege of eating an elephant, or running a marathon, or reaching the world for Christ. We take one bite at a time. We put one foot in front of the other. We focus on the opportunity or challenge directly in front of us.
She has made great strides. From the first evaluations that placed her as a 1-3 month old despite being 24 months, she has moved to a solid 9-12 month old in most areas of development. Initially, there were concerns that she would be nonverbal. She is now babbling and has a 2 or 3 words. She is more likely to use her speech when she is angry, but we will take what we can get. She is still unable to sit up unassisted or transition from one position to another, but she can now sit up in a grocery cart, or in your lap. She can tall kneel when placed in the position and is moving towards W sitting. (yes, we know W sitting is a bad thing). She can seem to "fall" out a W position with less trauma than some of her transitions. She is very mobile in a baby walker, but she is outgrowing it and every therapist in the world is unhappy about her using it. It does not promote the kind of walking that will eventually be helpful to her, but we can't bring ourselves to take away the only form of mobility she currently has. When L is in the walker, she gets to be a 2 year old. She empties cabinets and clears book shelves. She dumps trash cans and runs over her sisters. She has moved from choking on a liquid diet to being able to finger feed anything. Intentional grasp and release is a huge struggle so you can only give her a few pieces at a time, but it is all table food. She has even learned to eat french fries in the car. ( L absolutley loves grease and salt!) We are currently working on holding a sippy cup.
Everything L does is a challenge as well as an opportunity for a huge reward. She shows delight in a way that makes your whole day, and a simple smile lights up her face. Chaos, loud noises and change are hard for her, but that has just made us pull closer as a family and spend more time in our own house and yard. I rarely hear B complain how unfair it is that she has to work so hard in school. What can you really complain about when your sister is struggling to walk and talk. Is your spelling struggle really that bad? I think we have a much better perspective on what really matters. I still struggle with priorities. We spend roughly 5 hours a week in formal therapy, drive to Vandy every other week, and spend 2 mornings a week at WKU for speech. In addition, we do daily physical therapy as well as ongoing speech and OT work. I have considered hanging a sign on the front door- "We have decided that L will walk and talk. We will work on the house when that task is complete." Do you think anyone would really understand?
This last week we spent two hours at Vandy trying on and fitting braces that will help her seperate her legs and build trunk strength. She also had casts made of her feet in order to have additional braces designed that will go on her feet and force them to be flat. She currently walks (in the walker) and stands on her toes. L is very small so everything is being custom made. We have also experimented with walkers. Our initial excitement has been slightly dampened as the therapists have decided L needs to practice in several different items before determining what will be best for her. We simply want to see her moving. She handled all of this like a champ. What a trooper. I described it as the hardest two hours of work I have done in a long time, and J, who has no choice but to attend therapy along side me and L, was a raving mad man.
My time table is always faster than anyone else working with L. I see all the therapies and constantly want to interject. " If you will just articulate more, we can get a little speech in with this PT. If you will help her sit this way, she can stretch her hip muscles while you sort those beads. If you will just let her scream while you are doing therapy, we can get another hour of eye patch time in." I want everyone to be everything. I may have set my standards a little high. Every night I pray "Lord, just give me grace for the day." In other words, remind me I only have to eat the elephant one bite at a time. The good news is, that every once in awhile, it tastes like creme brulee.
