a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Saturday, May 16, 2015

Let's Just Call This A Random Update

It's been almost 6 days post cast. I predicted that Oia would have recovered back to her regular mobility by now. I predicted wrong. She is still crawling some indoors and still limping as to put no pressure whatsoever on her right leg and only stepping to; in other words, not stepping through in complete stride. It's really frustrating for us while we wait out this setback. I often think the stretch just isn't worth the trouble it creates. And to boot, Oia has been especially emotional this week with a relentless whine and often cry that seems unnecessary which sends our minds into guessing mode. Is it the setback or does this shift in mood have anything to do her daily prescriptions? We have no clear idea and our nerves are currently feeling it.

And talk about feeling it... our star of the show had 7 scheduled doctor's appointments in the last 5 days. Seven. It's not uncommon to have multiple appointments in the span of one week but 7 is the record thus far. Cast removal, orthotics fitting, dental appointment, neuropsych feedback, OT, vision appointment, and developmental peds appointment. Oia is as tolerant as she can be and for that I am thankful. Tolerance takes new heights with Esme though, who blows me away with her patience and wisdom of a situation that has nothing but everything to do with her. Oia is us. We do this life together and some portions of this life are not exactly fun but somehow Esme has yet to complain. It's true. She asks to come along and never wants to be left behind. She watches over doctor's shoulders while understanding to stay out of the way, she listens, she asks questions and understands tricky explanations, and ultimately she learns. She rubs Oia's leg while she is crying through a casting and she holds her hand during the more anxiety inducing parts of an appointment. Esme always senses when a nice dose of compassion is in order and in many ways, my littlest girl is the big sister. The lessons this one must be absorbing are likely far more and greater that even I can see or imagine.

And while we find ourselves driving from school to one appointment or the other, we do very much find peace while at home. We stay put when we can. This humble place of ours nestled so perfectly at the base of Bear Den Mountain offers up so much peace and instantly refreshes our spirits just by pulling onto the gravel driveway. We are as home as home can be and falling in love with this home more and more every single day.

Pick the front porch or the back, but please, take a seat and stay awhile. I'll make you a coffee.

Our free pool membership...

Life in the woods just feels good. Our bodies have been riddled with poison oak or ivy or maybe a nice little blend of the both but I wouldn't trade it for all of the fanciest cities in the world. Nature is our outlet, our solitude, our livelihood and we dig yard work and upkeep of land. And it's been so wonderful to witness this slice of the world wake up from winter. The daily surprises of various bloomed wildflowers, budding berry bushes, flowering trees, the occasion black bear track and other wildlife sightings are all new discoveries that leave us feeling alive and grateful for the place we have arrived. Our senses are in a glorious overload over here. My favorite spring surprise thus far has been the wild orange poppies that have sprouted along the railroad tracks just a few yards from our home.

Day in and day out I cross these tracks and wonder why I only see these dainty poppies here and no where else and then I can't help but think of my Oia. It's no wonder that this flower so tall yet delicate, so unique and rare, is her birth flower.

"A flower does not think of competing with a flower next to it. It just blooms."

A few scattered but seemingly intentional wild poppies assure me, as if I ever had a doubt in the world, that my firstborn (as well as her sister) is the reason for my existence and that this is indeed the place where we belong.
We have been spending many hours burning fuel and cruising these mountainsides by Gator. For anyone who understands what it's like to parent a hyperactive kid who seeks perpetual motion would understand why this is such a joy. A ride on the Gator gets us out without actually leaving home per se, it's the only place Oia stops to actually sit and therefor rest but much to her delight she is still moving, it takes us up to scenic overlooks, and it is the ultimate reset button for all of us. It's our version of church with a perfect sermon and we need nothing else. I told Rob tonight how I pray that these wholesome and simple moments such as a family ride on the Gator are being etched and filed away forever in the minds of our girls to be fondly remembered many years down the road from now.

Someone I know zonks out almost every singe ride, and always while laying on me. I adore it.
So, amid the crazy this life so generously can fling our way, there is always calm to be found. There is always a better perspective to seek. There is always a test of patience lurking around the corner, namely this life of special needs parenting, but I'm remembering that no matter what, we've got it good. Not easy, but good.

Up next: the Neuropsych Evaluation plus results

Tuesday, May 12, 2015

Grow, Cast, and Repeat

Another dreaded bout of casting is officially in the rearview. We just survived a 3 week casting period for Oia's right leg to alleviate the tightness in her lower calf. Our girl had grown so, so very tight. Since Botox doesn't work on Oia, casting at this point was our only plan of attack on her ankle contracture for at least a couple more years until the idea of another lightening surgery will be tossed onto the table.

We've lost count on the number of casts this kid has worn. I can tell you though that of the 10 cast color choices available, Oia has had all but 2 of them. Red was her color of choice for the first week this time around.

The red cast came off for skin check and repositioning after the first week. A second cast was put on for the remaining 2 weeks. Little sister and I encouraged a happy green. Oia couldn't have cared less.

Today marks the first full day post cast. We knew what to expect from the past castings and it's often not very good. Post cast we have an extremely limpy girl who prefers to crawl or be carried. Steps are slow, with both hands held, or braced along a nearby object for support. It's frustrating for Oia. It's always a setback. Rob and I still aren't sure exactly the feeling she has post cast. Does she hurt, feel unstable, weak, unconfident with new feeling of leg, etc? Hard to say. Likely a mixture of all of the above.

She will rebound as the days pass by. She always does. By the weekend, she'll be full throttle again. And then, Lord help us.

The good news is there was enough of a stretch gained from the cast that her right foot can now be stretched to the 90 degree/neutral position once again. In simpler terms, her foot fits down into the heel of her new brace as it should and her step, with braces, is flatter. Her heel is much lower to the ground for the time being and that was the goal. The gain may seem minimal in degrees but every little bit does provide a safer, more stable gait. We are hopeful this will get us through the remainder of the year but only the next major growth spurt will tell. Her surgeon says we will play this game of grow, cast and repeat for many years to come.

Here's to hoping they bring back the fun tie-dye wrap for a much more spunky cast next time. Because yes, undoubtedly, there will be a next time.