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

Wednesday, December 30, 2009

It's Been a Good Year

Last year this time, late December 2008, I was eager to bid farewell to what was one of the crummiest years I had ever had. Truthfully, I felt robbed of what should have been one of the most joyful years to date. 2008 should have under normal circumstances been a year of many firsts for Oia but little to none of those firsts ever happened as they should have. I found myself still trying to cope with our new normal.

At the beginning of '08, Oia was just barely 4 months old. My new-mommy heart knew that there was something different about Oia but the rest of me was not willing to think about it, let alone accept it. We had already learned of some vision impairments and chalked up all other red flags to just that...her vision. Then shortly after, it was what felt like a downward spiral from there. I felt pummeled by Oia's diagnoses and all of the medical lingo and doctor's appointments and therapies that followed. It was a whirl-wind of emotions and a juggling act all at the same time. In addition, I lost a father-in-law and a grandmother. However, I mention this not for a pity party. Many people go through far worse things than we did but in a nutshell, it still sucked. It was good riddance to 2008 and I KNEW 2009 would bring brighter days and a much stronger, more able Oia. I was determined it would.

And it did.

At the start of this year, 2009, Oia was 16 months old. She could only sit, when placed in the position, with her legs straight out and stiff in front of her. That’s it. 16 month olds are supposed to crawl, walk, run, climb, fall and get back up and do it all over again in a matter of seconds. Oia just sat but I was thankful for that, I really, really was but still dreamed of a stronger, more able Oia.

Today, a year later, Oia has moved mountains. Leaps and bounds ahead of what I thought were possible one year later. It seems like this year has brought progress in some shape or form, in small doses, almost every day. She is a fighter. She is a hard worker. She is the best teacher I have ever had.

Today, she sits. Now, with her legs bent and tucked under her to one side.

She can make a stranger smile.

She can laugh.

She can crawl. Reciprocal crawl even. Using her right arm.

She can push up to sit from lying on her back.

She can roll over.

She can pull up to anything to stand.

She can transition from hands and knees to stand in the middle of the room by walking her hands back.

She can use her right hand spontaneously.

Today, she can walk. By herself. With or without AFO’s. SHE CAN WALK.

She can change directions while walking.

She can step backwards.

She can safely fall backwards onto her bottom and now uses protective reflexes when falling forward.

She can climb/crawl up stairs.

Today, she can step up stairs if handrails are available.

She can say a handful of words.

She can follow simple directions.

She can problem solve.

She can clap.

She can give kisses.

She can give the tightest, two-armed hugs.

Really, she can do anything. And if she isn’t doing it now, I know that one day she will be. It may look different than how others her age may do it, it may take her longer to do it, and it may always be a challenge to do it but she will do it.

A lot happened in a year’s time. We were able to witness some ‘firsts’ this year…more than we ever expected. They didn’t come easy but the victories were sweeter because the battle was harder and we got to cheer a little louder than most. We are thankful and our hearts are full.

So needless to say, 2009 was an amazing and fulfilling year. It’s been a year of acceptance. I have become comfortable enough to educate strangers who ask about Oia. I now enjoy sharing her story and shedding light to those who ask why she is the way she is. This makes me proud and I look forward now to questions; especially questions from curious little ones.

It’s been a year of growth and progress and hard work…countless hours of therapy…countless hours of trying something over and over and over again. The progress that Oia has made has shed some light as to what her future (our future) may have in store. All things can change in a matter of seconds, that I know, but I am beyond thankful for the now, and for the past that has brought us here.

It's been a good year. A very, very good year. But all good things have to come to an end; isn't that what they say? So, good bye 2009 and welcome 2010.


Friday, December 25, 2009

Monday, December 21, 2009

Ohio Bound in Winter Storm

Living in the south for nearly 10 years now has made me realize that 'the south' handles snow much differently than 'the north'. In the south, the term winter storm usually means a chance of snow, maybe a dusting, and a complete wide spread panic/mad-dash to the grocery for what most fear could be their last meal in days. Being the 'northerner' that I am, this makes me chuckle every time. However, the southern winter storm this time was in fact a quick-building, fastly falling, true winter storm and we were stuck right smack dab in the heart of it all...in our car...for nearly 30 hours...WITH a 2 year old.

We left our Virginia home at 5pm on Friday night for what we thought was only going to be our regular 8+ hour drive to Ohio for the holidays. Once we began our adventure north, we quickly realized the danger we were headed into. Thank goodness for 4-wheel drive and Oia's Aunt B who did a fabulous job of keeping Oia occupied so Rob and I could focus on the roads ahead. We were stranded in stand still traffic 3 separate times along the highway; once for 3+ hours, another for 2+ hours and finally for another 2+ hours. We were exited off the highway at one point by law enforcement as the highway was shut-down and we couldn't find a hotel/motel/inn with a vacancy and even hotel lobbies were packed with stranded travelers like ourselves. So, at 4:30 am Saturday morning we had to surrender to the cozy comforts within our own vehicle for a couple hours of sleep in a Wal-Mart parking lot. Needless to say, no stores or restaurants were open but luckily a few gas stations were. We were not prepared at all for the conditions and had no 'real' food or drink for ourselves or Oia. We made it finally to Mamaw Teaster's house nearly 30 hours later and what a glorious moment that was.

Oia did surprisingly well. While stuck in the stand-stills, we let her play around in the drivers seat and 'drive'. She only really cried the last 45 minutes of our drive. She has proven once again that she has the patience of a SAINT. As for the adults in the car...we wanted to cry the whole time.

So, I leave you with a few (not so good) pictures of our winter storm that suddenly brought at least 2 feet of snow in the mountains of Virginia and West Virginia.

The ironic part of it all: Ohio, the northern state, had nearly no snow at all. Go figure.
Early into the storm, slid cars at exit ramp off of I-64 near Lexington, Virginia

Cars abandoned on I-64 in mountains of WV

Look closely...a car on the opposite side of the road...under snow. Small portion of the front tire is visable.

Stopped again on I-64 (for 2 hours) just a few feet in front of the New River Bridge in West Virginia. Oia got to 'drive' with daddy while B and I got out and walked a bit to at least enjoy the scenery. Many travelers got out and built snowmans to pass the time away.

Tuesday, December 15, 2009

Up, Up and Away!

One of Oia's favorite things to do is hold onto or play around a railing. When she goes to the park, she only wants to climb up and down the ladder just so she can hold onto the railings (with our help of course). When we are at The Little Gym, she finds the set-up with the red parallel rails and walks in between them, over and over and over. Not sure why the fascination with rails, maybe this is still a sense of stability for her, but whatever the reason, she absolutely loves them. So, our 2-story home with steps and handrails is a slice of heaven to her. But naturally, standard handrails are too high for her and the steps a bit deep for little and challenged legs to tackle on their own...plus shifting her weight forward enough to lean in and step up each step has been next to impossible without adult assistance...until NOW!

Back in August, Rob and a buddy installed a pint-sized handrail for Oia. We have practiced climbing the steps with her since her own handrail was installed and it's fair to say that now she has mastered this challenge. We still have to be right behind her for safety but she certainly is stronger now and proof that CME exercises are making a difference in Oia's mobility and core strength.

This video doesn't show her alternating legs when stepping but she does do this from time to time without prompting. Clearly, stepping with the stronger leg (her left) is her preference.

Of course, we are so proud of her but I assure you no one is more proud than Oia herself.

Way to go, sweet girl!

Tuesday, December 8, 2009

Eye Update

Yesterday was another long and tiring day for us. We headed to northern Virginia for Oia's second opinion ophthalmology appointment. We left the house shortly before 11:30am and returned home just before 9pm. Traffic, a 3 hour appointment, little nap, and more traffic made us all a little fussy.

We really enjoyed our visit with Dr. P who is a down-to-earth, experienced man who never rushed through the appointment and made all efforts to understand Oia's background therefore helping us the best he could. The main objective for the appointment was to see if Dr. P agreed if Oia would benefit from strabismus surgery in her right eye as her current ophthalmologist suggested. The answer was yes, but he felt the benefits were likely to only be cosmetic and held very little hope that she would benefit visually.

A little bit of visual history to help put this all into perspective...

Both eyes, but mainly the left eye, gazed outward in the very beginning. Glasses at 4 mo. old corrected the alignment of both eyes.

All was well and good for the first year in glasses....straight eyes most of the time...until just this past spring. Then, we began to notice a change in the eye alignment again. This time it was the right eye that veered inward and left eye remain straight most often and it became quite obvious that the left eye was now the dominant eye. (This is a noted mystery to Oia's orthotist, neurologist and both ophthalmologists but no-one has chosen to look further into this. We will pursue.)

We were told to physically patch Oia's eye to 'shut down' the dominant eye and force the right eye to function. Theoretically, this made sense but not to a nearly 2 year old. She ripped the patches off quicker than we could put them on and short of sitting on her arms the patches were NOT going to stay. We were prescribed Atropine drops; the next best thing to patching. 1 drop/day in the dominant eye to dilate the eye thus blurring its vision. Nearly 5 months of Atropine drops and right eye showed no change. Left eye still did all the work of both eyes, right eye stayed inward.

We've done glasses. Check. We've tried 'patching'. Check. The only option now is surgery. That was the discussion with Dr. P yesterday. After a very thorough examine, he believes that Oia would benefit from strabismus surgery, BUT, as mentioned above, benefits would more than likely only be cosmetic. Straightening her eye would be "no problem" but he said her right eye has little visual function (my mind translates that to blind in the right eye) and prognosis doesn't look so good. That was the lump in my throat that I tried to swallow on the 2+ hour ride home. I appreciate a doctor's honesty. It was without that honesty from Oia's current ophthalmologist that led me into assuming that once the eye was 'straight' we could regain or strengthen the vision in that eye. I never knew the lack of function in the right eye was so severe.

So, surgery it is bright and early on February 5th with the new ophthalmologist. We have to try. My heart is hopeful for vision gains but realistically I know chances are slim.

In the meantime, Dr. P said to begin adding 1 drop of Atropine to Oia's left eye again and to make sure she spend some time without her glasses on. Why blur an eye to penalize it but then continue wearing glasses to help it? It makes perfect sense.

Follow up with Dr. P in 4 weeks. Maybe drops will help...without glasses this time...or maybe they won't. We'll never know if we don't try. Oia deserves to see the world as we see it and we will do whatever is in our power to try and make that happen.

Please keep her in your thoughts.

Saturday, December 5, 2009

CME: Day 2

This week was the Cuevas Medek Exercise (CME) clinic at our local therapy center and yesterday was the last day Oia participated as a model for the therapists in training. We were scheduled for Monday, Wednesday, and Friday but there was a change in plans so we were asked to just return on Friday for a treatment plan.

The course was taught by Simona DeMarchi from Canada. As I understand, this was a clinic for Level 1 training and I believe CME certifications go up to Level 4. Simona instructed from a manual and demonstrated CME practices on dolls and on live models when available. Oia's physical therapist attended the clinic which means we have a lot of CME in our future which is music to my ears.

What makes me a believer in CME? As far as I can tell and understand, CME therapy does not manipulate the child's movements, or manually move them, but instead provokes the body into making those movement patterns voluntarily. Each movement that Oia makes during the therapy is initiated by her brain and her muscles and only guided/supported by strategic hand placement of the therapist. The therapy taps into the deepest depths of Oia's brain and triggers those responses and movements necessary to maintain posture and balance. The idea is that the responses will evolve into a more natural and fluid movement pattern over time. Another key component is that CME does not use any assistive devices such a AFO's, walkers, loft strands, etc. The child gets to move as 'freely' as possible.

Monday's session went much better than yesterday's session. Monday's exercises were fairly easy for Oia and she was working with a therapist that she was vaguely familiar with. Yesterday was just the opposite; much more challenging exercises with a stranger...the perfect cocktail for lots and lots of tears. Generally when Oia gets upset during therapy, singing to her will keep the tears at bay. Unfortunately, that trick didn't work so well yesterday but I admire Oia for pushing through the tears, stepping on, and never giving up.

What do you think?