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

Wednesday, September 19, 2012

Sharing Some Good

All is good in the Teaster house. Allow me to elaborate and share some goodness because I have enough to pass around.

I'll start with the star of this blog, Miss Oia. Her 5 year old well visit revealed that she has grown about 3.5 inches since the first of the year. Growth is good but as we all know, growth spurts and spasticity don't play well together. Thankfully though, we have not noticed any significant change in her range or flexibility as such growth spurts have always rocked the boat in the past. Perhaps the ortho doc will state differently after our appointment with him next month but I feel pretty good about it all. The well visit also revealed that Oia needs to be referred to audiology for a more formal hearing assessment. Nurse tried to give Oia a hearing test in the peds office, with chatty Esme in the room and ruckus in the hall, and the results suggested a referral. Poor conditions for a hearing test if you ask me. I'm not too worried about it though. We'll just wait and see what the results conclude after her October 2nd appointment and go from there.

And speaking of chatty... beautiful, beautiful words continue to come from Oia. Daily progress. Progress that has been 5 long years in the making but the Apraxic door inside her little head is slowly cracking open. I attribute every bit of where we are today to our 4 days with Nancy at the KCC. She, with the master key, unlocked the heavy, jammed shut door and has made all the difference. Carrying over our learned strategies at home and during private speech sessions has been the umph necessary to further push open that damn door. Spontaneous words are slipping out. Simple commands and even questions are emerging. Some where's, what's, and why's. Conversing with an adult who doesn't know her is not only possible, it's happening. If only even a tiny bit.

On the OT front, all is moving right along there too. We are about 2+ months into the private sessions and I am not only pleased with the goals we created and activities that our OT is bringing to the table but equally pleased with the attentiveness and progress coming from Oia. Fine motor, bilateral activities for a visually impaired girl with upper extremity weaknesses has all the potential in the world to frustrate to no end, to say the least. The good news is, she actually likes it. Loves to have control of her scissors. Loves to draw lines and circles. Loves to fiddle with a hard-to-open package or container. Feels proud to write her name, even though her little name fills the entire sheet and she signs like a doctor. Her OT skills are far from Kindergarten ready, but like all else, she continues to blaze her own curve and that's alright by me.

And let's not forget, the star of the show has a little sister. Our Esme. With all that we have learned, witnessed, and been through with Oia, we are savoring a greater appreciation for the natural development of a neurotypical child. Esme is the epitome of "time flies". I hated that phrase when Oia was an infant/toddler and I'm still not the biggest fan of it but fact of the matter is that now I get it. When you have a typically developing child, yes, time does fly. One day Esme is crawling, the next she is standing. Then cruising and walking. And talking. Today she walks more than she crawls, roams room to room, often alone, and on foot. And climbing in and out of toys, on and off of chairs, like it's her mission. Not a soul showed her how to move her legs, or arms, or body to tackle such feats. Not a soul manipulated her legs to form those shakey steps. It came organically and almost overnight. Her brain and body paired together and just instinctively did it. Dare I say we are experiencing a new dimension of parenting that we missed out on the first time. Rob said to me over dinner earlier this week, "I guess I just didn't fully understand and appreciate what this scenario would look like!" This scenario means two mobile children, both who require constant monitoring. Both who express wants and needs. Both, who together, have given busy a whole new meaning in this house. But no matter how crazy it may be sometimes, I'd be a fool not to feel blessed by this chaos and the two cuties who create it. It's all good.