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

Tuesday, July 31, 2012

This, That, and Happy Day

We, the big Sis and I, are in full swing with a little game I call Oia, will you puh-leease pee-pee on the potty? I don't really care for it much but it beats the alternative. I'm on a mission to get this girl fully potty trained. We are about 3 weeks in and going strong. And she's doing it. She is more ready now than she ever has been.

I've toyed with this game a number of times before. But my approach this time? Cold turkey. No more Pull-ups. Even if it means I'm changing wet pants 18 times a day, we are not going back and there is no turning around. Thankfully, it's actually going pretty well, meaning we have more dry days than wets ones and each day is getting progressively better. It started out pretty rough but now, at most, I'm changing one accident a day and we have left the house for a quick errand or a stroll in the neighborhood on multiple occasions and Oia has returned home dry every time. School resumes in a little over a week and she will waltz into her classroom wearing her big girl undies. I'm sure there will be accidents but these are to be expected for a while. I'm proud of her. Actually, I'm proud of us. Those who know my sweet Oia well also know how hard-headed she is. Potty training wasn't going to work until SHE wanted it to, no matter how hard I would have pushed before.

In other news, there has been some change to Oia's therapy schedule. We have begun private OT sessions and this has now been added on an every other week basis, which means we are now alternating weeks with PT. Previously, Oia has had PT every Tuesday and no OT. It's all about balancing the needs. Hopefully, OT will help refine some academic skills such as cutting, coloring, writing, opening/squeezing glue bottles, using glue sticks, etc. and overall right arm/hand strengthening. All these things Oia wants to do and enjoys trying to do but is not really that independent with any of it. I hold high expectations in the OT department... and hope we aren't being to lenient in the PT department.

And in more exciting news, Oia's expressive language is moving right along. Our trip to the Kaufman Children's Center in Michigan has been the best decision we've made in a long time. Hands down. The K-SLP is slowly allowing us to chip away at the apraxic wall Oia faces every single day. We script all the time. Oia repeats everything we say, with at least an approximation. And she enjoys doing it. It's lovely. She still loves to read the workout book each day and wants to read it for way longer than I have patience for. I'm so appreciative of the fact that our ST is learning the technique as best as she can by watching our videos from camp and borrowing our cards and workout book for our sessions. And the best part of all... when her ST says to me after each session is over, "She. Did. Awesome!"

And the proof of progress happens when you least expect it. In preparation for Esme's first birthday on July 20th, we practiced and scripted Ha-pee Bir-Day over and over again. On the evening of Esme's party, the 21st, I was getting ready to put Oia to bed. I found her standing in the kitchen holding and examining the box that the cupcake stand came in, and after noticing I was standing there watching her, she looked up to me and said Happy Day. Oh, happy day it was... I live for those spontaneous words from my almost 5 year old. And what's even better than that? The birthday wish Oia was able to communicate to Rob whose birthday followed on the 29th... a very clear and cheery Happy Day, Daddy!

Yep, best birthday present ever.

Friday, July 20, 2012


One of my greatest pleasures of being a mother is seeing the innocent smiles that surface on my girls faces each morning. They always wake happy. Always. Messy hair, eyes still sleepy, but emerging smiles shine bright. Best feeling ever. Today, I was especially eager to receive my morning smiles from our tiny Esme' as it was the morning of her very first birthday.

I kept eyeing the clock all morning. The girls and I played on the floor but the countdown to 9:33am was on. I wasn't going to let that minute, the very minute Esme was born exactly one year ago, come and go without notice. Or reflection. It would be just 60 quick seconds but I was determined to savor all 60 of them.

With Esme playing on the floor in front of me, and Oia beside me, and all of us still in our pj's, 9:33am came. Oia and I cheered and clapped and Esme mimicked our excitment. I said Happy Birthday to Esme way too many times while lathering her sweet neck and cheeks with just as many kisses. My happiness and gratitude in that single minute flowed over in the form of a couple tiny tears. Second best feeling ever.

And Rob, who was out of state for work this morning, was apparently thinking the same thing as I. Although focused on meetings, 9:33am stood no chance of sliding by him either. His text to my phone at that exact time read "Happy Birthday, Esme". We weren't all here together, but together we thought of and celebrated our Esme at the very moment she made us a family of four. She sure is something else, and her big Sis thinks so too... and it's hard to fathom that now she's already one year old. What a neat year it's been.

Happy Birthday, sweet Me'Me'... We love you dearly, little girl.

Tuesday, July 10, 2012

To the Beach

You know you're livin' the good life when the toughest decision you have to make in a day is whether to go to the beach or the pool. We had about 6 of those days in a row last week and let me tell you, it was nice. Really nice.

We spent the entire week as a family vacationing in South Myrtle Beach, SC. Our dear friends, the Hampton's from NC, invited our family to join theirs. There was plenty of room to comfortably accommodate our party of four and their party of five in their ocean front condo. I anticipated a fun but tiring week, although vacation, due to the packing, hauling, unpacking, wrangling of children, and whatever else traveling away from home requires with two small ones, but the week was truly the opposite of tiring. It was downright relaxing. Wake up, eat breakfast, make the toughest decision of the day and then stay there until mid-afternoon. Return to condo, eat a late lunch, nap if needed, cook dinner, repeat. Awww, the good life.

Oia did awesome navigating at the beach, or "beap" as she pronouces it. We bought her a pair of Keen's just days before we left with the intent of them being her water shoes. She wore them well (sans SMO's) while playing along the shore. These protected her toes from dragging in the sand, as her right foot sometimes will do. Sometimes though, she did roam the shore barefoot but she mostly wanted her Keens on. The sand was not an obstacle for her and she tolerated the waves well until they became knee deep or higher, which at that point she required a hand to hold from one of the adults. But overall, she was fearless about the ocean. Wanted in, wanted to jump over the waves (which required max assistance), wanted to run into the water, wanted to turn around and run out only to run back in again... over and over and over. Last July she was at the tail-end of post-op recovery, and this July she's rompin' in and around the ocean. Love to use these little experiences as our dipsticks to measure and highlight her progress.

And Esme. Her first glimpse of the ocean. Her first taste of salt water (and sand). She, too, loved it. Pure baby bliss. And when naptime arrived, she and I would venture for a brief walk with the double jogger along the shore where she would zonk out in seconds for a decent and peaceful nap. Probably one of the daily moments I enjoyed most about our trip. My walks, her naps. Precious times.

Of course, I took more pictures than one person should ever be allowed to take in one week. But, put me with 5 cute kids along the ocean and I just can't put my camera down. Memories. I have the need to capture them all...

To Chad, 'Gita, 'Nola, Taft and Collens, Thank you for a wonderful week of friendship, fun, sand and sun. We've been blessed. Until next time.