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

Thursday, September 29, 2011

The New 'Do

I held her (somewhat) still in the chair and Daddy stood by to watch. Her long, blond hair tumbled to the floor while her Daddy lost all color in his face. Something about this Daddy and his girl's hair, after all, he was the first one to break out a hair bow long before she really had any hair. But, each ponytail became prefaced by painful morning tangles and one really whiny girl who would just take off outta' the room at the first glance of her comb. Long hair just isn't worth the struggle. The time had come. And Rob loves it.

Monday, September 26, 2011

Trying Something New

Not sure where the line is drawn exactly, but in my world a 4 year old is not considered a toddler anymore. And the departure from toddlerhood brings up an issue for Rob and I, which is Oia's drooling. We are not bothered by the fact that Oia drools. To love her is to love ALL of her and what she does and we do so whole-heartedly. But, not everyone does. Kids her age are well aware of the girl with the wet chin, occasional drool, and damp shirt. Kids have commented, many stare, and a few have actually backed away from her as if she was contagious. Those are the times I cuss CP.

On an average day, I must change Oia out of a soaked shirt at least once, many days twice. I've learned long ago to dress her in light colored shirts, mainly white ones, as this color doesn't show much wetness. Her long blond hair is ALWAYS pulled back into a ponytail or otherwise it becomes wet and sticky with food, stuck to her neck and chin, and an absolute mess. So needless to say, we've come to the place where we are ready to try Robinul, a Glycopyrrolate, which our developmental pediatrician suggested we could try long ago. The drug is used to treat many things but our goal ~ a dryer mouth with NO side effects.

To be certain to find the right dose without going overboard thus avoiding any potential side effects, we began at the lowest possible dose of .1 mL. That basically equates to about 1 drop. Over the course of the last two weeks we have worked our way up to 1.5 mL. This seems to be where we are noticing less drool, if any. We are going to continue the dose of 1.5 mL on days where Oia will be among others her age, such as on school days, at birthday parties, on play dates, etc. Other times, we'll leave her be. That's the beauty of the medication ~ it metabolizes quickly so there is no wean period and we can stop or start the med at any time.

Overall, I'm not crazy about medicating my child for something that may seem so vain to others. But at the end of the day, we want Oia to be socially accepted. If the remedy to this particular difference in Oia noted by others is as safe as a minimal dose of medication, then we're on board with it. And so far, so good. She wore the same shirt all day long today, from morning to bath time. And it was even bright pink. This is a first for us. So at this point, we'll continue the use of the med as long as it continues to treat her well.

Photo taken on a day of no medication. Not too wet yet.

Wednesday, September 21, 2011

Two of a Kind

On Sunday, I took Oia and Esme to a little girl's 4th birthday party. And, let me tell you. If you want to be the life of the party, even if only for a moment, walk in carrying a peacefully sleeping newborn and you'll be just that. Right away, two ladies began gushing over Esme as they recalled what life was like for them when they had infant children. I talked with the ladies for a brief moment, Oia charmed them with her sweetness, and we moved on to find the birthday girl.

After some playing, it was time to gather for song and cake. As it would be, Esme felt the need to eat too. No sooner than I had pulled the cap off of the bottle I brought for her, one of the ladies swooped in and asked if she could take Esme and feed her. Once I handed the littlest Miss over to eager arms, Oia and I settled in for the singing of Happy Birthday. After a few minutes had passed, I returned to check on Esme who was now full, content and tucked snug against this friendly stranger. While holding Esme, she was gazing at her sweet face and saying what an angel she was, that she was a "miracle".

Of course, all children are just that ~ a miracle. But, I'd be lying if I said I didn't think mine were just a little extra special. But the comment left me compelled to share with this lady what a miracle Esme really is. It's the first time I've ever mentioned her condition to a stranger and probably the last but like I said, I felt so compelled to do so.

"Well, you know, she is a little miracle. Her heart is special, located on the right side of her chest."

A woman standing next to us, heard my words, and chimed in to say, "Mine is too!"

Excuse me? With eyes the size of Texas, I replied with utter shock in my voice, "Really?! You have Dextrocardia too??"

This lady was unfazed by my surprise. "Yeah, and is her heart rotated a little bit?"

"Uh, yeah." (Still reaching for my jaw here)

"Yeah, mine too!"

Hol. Lee. Cow. Now I see palsied bodies out and about from time to time. I can spot them from miles away, even the most mild of cases. A physical disability is more of an obvious difference, most of the time, than a heart condition is. Maybe that's why I was so surprised and delighted to have my path cross hers and to actually be meeting someone of the same mold as Esme. Just months ago, I felt like I was the only one in the world who had a baby with Dextrocardia. Had she not been standing near to hear our conversation, I would have never known this about her.

Suddenly, I went into question mode. I wanted to know everything about her. I learned her parents didn't find out about her uniqueness until she was about three years of age. Physically speaking, it has never caused her any problems to date. She has tricked doctors a time or two when getting various check-ups or x-rays. You can only imagine the look on a doctor's face when they can't find a heartbeat where it's supposed to be, yet the patient is alive and breathing right in front of them. Sounds as though her heart has been more of a conversation piece for her than a problem.

I spent the rest of the party observing this woman from a distance as if to get a glimpse of Esme's future. I eyed her every move. I found myself looking for any outward sign of a woman in poor health. Or a woman with a unique heart. I saw nothing. She seemed healthy in every way ~ skin of healthy color, glowing, smiling, moving about with ease, in seemingly good shape. More importantly, she's a woman whose heart has carried her far enough into this life to experience life through the eyes of her grandchildren. That is what makes me breathe a sigh of relief and in turn thankful for our paths that crossed when they did. I had hoped that one day I would meet someone who was like our Esme but I never expected it to be so soon, or so random. But thankful it happened, however.

Friday, September 16, 2011

Jump Around

I'm here. Alive and well. As is the rest of the family. But I'm tired. There are more than a handful of things to blog about but frankly, at the end of the day, my brain is too tired to do it. Life with two kiddos is no joke and I'm pooped.

But, I must not wait to share what Oia is so proudly doing these days. Jumping has been an ongoing PT goal which began prior to her surgery. The idea - evenly bending both knees, equally pushing back up with both feet, clearing the ground ever so slightly, and then landing on BOTH feet without falling.

First video is just prior to surgery. These are the first successful attempts at hands free jumping (no adult assistance) on the trampoline. Notice how her right heel remains up and right leg has a constant bend at the knee (too tight to straighten).

Last video, post surgery. Right foot is flat, leg is straighter. With practice, she'll get better at bending both knees and pushing up from a lower crouch but for now, this is pretty darn awesome.

Friday, September 2, 2011

A New Experience

The Littlest Teaster, our beautiful Esme', is 6 weeks new. Already. And for the first time in my life, I'm understanding what it means to have time fly. I'm awestruck by this new baby of ours that looks at me and then holds onto my very presence with an effortless stare. She locks into my eyes with hers because she can. She sees me, her mommy. It's a foreign interaction to me from a newborn. Esme' can hold me, and speak to me, with her eyes alone. Only a mother can understand.

My sweet, newborn Oia tried hard to do this very same thing. Over and over again. But could not. She looked over me, behind me, just past me. Often, her eyes drifted in different directions. Still, I loved her so. Perhaps this is why the intentional gazes from Esme' leave me without words. I sit, absorb the moments, and marvel at what a beautiful and natural connection, or bond, this is for a mother and her child.

I'll add this deep appreciation of such a bonding experience to the ever-growing list of unexpected lessons taught by my greatest teacher. Oia, the special little girl who made me a mommy, continues to point out to me each and every day, the finer details of this life. Without her, the priceless details as subtle as simply making eye contact, would slide right by me.

Every child born into the world is a new thought of God, an ever fresh and radiant possibility. ~Kate Douglas Wiggin