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

Tuesday, November 30, 2010

First Botox

After an awesome hour of PT this morning, Oia received her first Botox injections which consisted of two shots in her right calf muscles. It was certainly quick, but not necessarily painless. Within the big picture, although this particular use of Botox is not yet FDA approved, it's common and safe and proven temporarily effective in varying degrees for most CP kiddos. However, to say that I wasn't out of my mind nervous about actually signing my name on the dotted line to permit such a powerful toxin to be injected into my baby would be a absolute lie. I literally prayed while signing.

Oia did as well as I thought she would. She cried yet was so tolerant. After some tears and two cute penguin band aides later, we were on our way home. Once home, Oia took a long lap and woke happy and playful and seemed free of discomfort or pain at the injection sites. We'll see what tomorrow brings.

We've been told it could likely take up to a week to notice any relax in her tone. So, now we wait... and wait... and hope.

Tuesday, November 23, 2010

CIT Again?

It's been a little over a year now since Oia's last round of CIT. It was a modified version since she was under 3 years of age. I swore then that we'd do it again one year later but clearly that hasn't happened. Casting, followed by ankle injury/recovery period, and the constant, watchful eye over her spastic and tight right leg have really taken priority in the last couple of months. Unfortunately, we only have the fight within us to pick one battle at a time. However, even though the tightness of her leg is still a major issue, she is back to 100% and so the idea of a third round of CIT has crept back into my mind. Round 3.... can we do it? I think we have to.

Yes, Little Miss uses her right arm and hand more now than she ever has before but we can't stop here. She is still so young and this is when crucial gains can still be made. She has so much potential and spontaneous use of her right hand that I feel we wouldn't be doing her justice to settle now with her current functional level.

Since Oia is 3 now, she'll get the full-on, real deal, CIT "camp" if we move forward with this. Camp is 4 hours of OT a day for 5 days a week for a total of 15 days. Previous CIT's have been modified versions where the therapeutic responsibility rested upon Rob or I. We only visited an OT for one hour, twice a week and it was for a total of 30 days. It was exhausting but still very much worth every day of it.

It's a lot to think about but I'm mentally preparing myself to tackle this before winter is over. We have insurance inquiries and other minor things to consider before we get the ball rolling but my heart tells me we need to do this.

I'll leave you with a video of my little helper using her right arm, no prompting. She absolutely loves to help me out in the kitchen and it melts me to see her do something for the first time because she has observed me doing it before; like throwing food scraps in the trash. This particular day, she was done with snack and decided to clean up all by herself (although I would have saved them for later but that's okay). She even put her dirty bowl in the sink... how wonderful is that?

And FYI, Oia's Botox appointment was scheduled for today but since our provider decided to dilly dally around with the approval, we had to cancel and reschedule for November 30th. Stay tuned...

Photos are recent captures of Righty at work. I still do a happy dance every time.

Tuesday, November 16, 2010

Happiness is...

turning around to check on your child in the backseat to notice that she is voluntarily eating a cheese stick with her right hand.

Thursday, November 11, 2010

Can She Run?

Oia's routine neurology appointment yesterday afternoon went smoothly. Dr. T covered the basics by diving right into the forbidden topic of seizures. "Have you seen any yet?" Praise God, we could shake our heads and answer no. (The watched pot theory is still working.) Still, he's a little surprised by this but is just as thankful as Rob or I that her little, irregular brain is playing so nicely. He gently reminded us that she is, and always will be, at high risk for these nasty things but we'll continue to leave her medicine free as long as she is seizure free. Dr. T shared with us though what one of hers would look like should one ever rear it's ugly head and now I know there will be no mistaking one if God forbid, one ever does.

And then some minutes into our conversation, he asked what we have never been asked before.... "Can she run?"

Think about that.

We have been so accustom to questions like Can she crawl? Can she stand? Can she walk? Does she walk by herself? How well does she walk? Walk.... walk.... walk.... and then finally someone asked if she can run. It didn't even dawn on me until the drive home while I was comprehending the details of the appointment but that's a question we haven't heard before. Running is a physical activity that has been out of our league, not even a distant focus or goal, because quite frankly, who cares? We just wanted her to walk and walk safely. To many, that's a fairly nonchalant, unimportant question but to my ears, that question is a true testimony to how far she has come and to all that she is, and will be, capable of. Needless to say, those were three very small words that made my day a whole lot brighter.

So, can she run? One day she will... but for now, she can walk pretty darn fast and I guarantee that's good enough for her!

Tuesday, November 9, 2010

Ortho Appointment: Botox

Oia and her entourage, which today consisted of Rob and I, her PT, and the student PT, all attended her ortho appointment at Kluge. Oia's PT is so involved in our ortho appointments and is always a great support for us. We had some things on our mental list of concerns to bounce around at this mornings appointment. Namely, questionable leg length difference, a hip x-ray, and Botox.

I'll start with the first, Oia's leg length. By quick physical examination long ago, it was mentioned that Oia's left leg (the dominant, stronger leg) was a tad longer than the right. No exact measurements were taken at that time and Dr. R believed that the AFO worn on Oia's right foot makes up for the difference. Our PT measured Oia's legs last week before beginning session and as accurate as she (and I) could tell, the length in Oia's legs differ by at least 1 cm, maybe closer to 1.5 cm. We questioned Dr. R today whether or not this needed to be addressed with a shoe lift of some sort but he felt that wouldn't be necessary at this time. He still believes that her AFO is corrective enough in making up the difference and that this length discrepancy is simply par for the CP course. As I've come to understand, an extremity with tone issues will not grow at the same rate as an extremity with normal tone. So there we have it, something else to keep an eye on. One leg is shorter than the other but no need for concern at this time.

Second on our agenda of concerns was a hip x-ray. Dr. R mentioned once some appointments ago that Oia should get a hip x-ray, the routine procedure around age 3. Oia has yet to have one. Dr. R said Oia's hips were fine and there really was no immediate need much less any concerns but in order to establish a baseline for any future need or shifts in her leg/hip structure, she'll get x-rayed at her following ortho appointment in 3 months. Painless and quick, why not?

And onto the biggest concern that is dangling in front of us which unfortunately won't be so painless is the idea of Botox injections in Oia's right leg. We are about 4 months post casting and subsequent ankle injury. Oia gained some good range in both ankles post casting but in retrospect, it's not for us again. Oia was immobile for too long follow casting due to the stretched and weakened muscles so in our case, the cons for casting outweighed the pros. It makes sense.... immobility in anyone with CP can be more harmful than helpful and in our situation that rang true. Our only other option right now to relax Oia's right leg is to try Botox. Two shots, hamstring and calf muscles. Aside from soreness at the injection sites, the risks are minimal. We have to do all we can now in the hopes to avoid more invasive procedures later down the road. I don't even allow myself to think of those "invasive" procedures now. Scares the hell out of me. BUT, for now, Botox it is. Just need to schedule the appointment... will more than likely have it done this month.

So, that's one appointment down for the week, off to a neurology appointment tomorrow after preschool.

Friday, November 5, 2010

Sleep, Oia, Sleep

I remember way too many details of the day Oia was diagnosed with cerebral palsy. Details of the hospital, the appointment, the doctor, the ride home, and the subsequent hours of that afternoon when the world expected us to move forward but we had no idea how to and not even an ounce of will to do so. The details will never fade. Shortly after returning home from that appointment, Rob and I layed on our bed, both propped up on one elbow as we lay facing our world; little Oia, who was peacefully napping in the center between us. We were many things that afternoon, but mostly tearful and silent.

I remember feeling confused as I teetered the line of denial and hope. I scanned Oia's body head to toe as she napped between us, looking for any outward sign that might convey that what we had just heard about our daughter's future was all a big mistake, a misdiagnosis. She napped with her chubby legs relaxed and slightly bent. Her tiny hands were relaxed and unclenched, her thumb untucked. With some lingering hope in my soul I remember saying to Rob as I rubbed her hands, "But see, her hand is not fisted right now...." to which he softly answered, "Yes, Mo, because she's sleeping".

From that moment on there was no more denying it. We were a family who would forever live with cerebral palsy.

As I did then, and still do, I love to watch my little girl sleep but doing so can be so deceiving. Once Oia closes her eyes, I should make a dash for my to-do list and prepare for another day but instead I hover over her bed for just a few extra minutes and stare. I stare at what looks like a girl who lives absent of a life-long disability. It's as though her cerebral palsy drifts from her tired body into the still of the night, leaving her alone to be a typical child. It's the only glimpse I get of a girl who doesn't battle to overcome spastic muscles on a daily basis. A girl who is free of therapy, one who can run and jump and talk and see well. In slumber, there seems to be no stiffness, no tightness, no one-sided weaknesses, and no overflow. Only a girl whose stiff body becomes limber and restful and completely comfortable. But despite all, I can still say that I stare over my sleeping baby with ease... because I know that regardless, whether she's asleep or not, she is still so absolutely perfect in every way.