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.


HAPPY NEW YEAR!

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.

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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.


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What do you think?

Monday, November 30, 2009

Orthotist Appointment and Day 1 of CME

Today was a long day. A good day, but long for Oia.

Our morning started bright and early with an appointment at Dr. R's office, Oia's orthotist. We meet with him around every 6 months to keep an eye on Oia's body alignment; her back and spine, hips, legs, and feet/arches. Our concerns going into this appointment were the tilt of Oia's hips (appears to not be symmetrical due to most weight bearing on the left side) and minimal arches on both feet, particularly the right foot rolls inward over arch when walking without shoes and AFO's. Dr. R did his usual quick (and fairly rough) assessment of Oia's legs and hips and declared that those concerns aren't too much of a big deal, at least right now. He understands that Oia is doing some walking without shoes and without AFO's and he agrees this is a good thing for her. He prescribed sole inserts for the shoes she wears without AFO's to provide more of an arch support. We got them today with no waiting before leaving the appointment. I asked Dr. R what we needed to do for Oia's hip alignment (which causes her right knee to cave inward) and he said to continue doing exactly what we've been doing; weight bearing activities in therapy, stretches, etc. and he said overall she looks great but that some misalignment was just simply 'par for the course' in the CP world. It's the degree of the misalignment, or compensation, that we will try to keep minimal. Hip x-rays may be taken at the next appointment but for now, all things considered, she looks great. I'm happy with that.

Our afternoon was spent at our local therapy center. The center is holding a Cuevas Medek Exercise (CME) training course this week where Oia is participating as a model for the therapists in training. I am so intrigued by this form of therapy and I have been made an instant believer after seeing what benefits Oia has gained from this therapeutic approach. From what I understand, having the training course so close to home is somewhat of a rare opportunity. The father of CME is from Chile and Simona is from Canada. Simona is here for this weeks course and that is who Oia worked with some today. Simona demonstrated whole group some assessment drills with Oia and then the group branched off into therapist/child pairs to practice what they had just learned in demonstration. Oia did amazingly well. She was able to do the drills presented to her, at least with minimal assistance, and beyond that she was so tolerant of new hands manipulating her. Simona commented on Oia's strong desire to perform and that is the best complement I could ever ask for.

The room was full of about 6 other kiddos and parents, ages ranging from about 6 months to about 5 years (I'm guessing). Ranges of abilities greatly differed. The hardest part of the afternoon was having to witness the two babies of the group as they were working with the therapists. It made me flashback to a time not long ago when Oia was just starting therapy and the tears flowed, from the both of us. Challenged and crying babies make for a weak mommy heart which made my heart break all over again for those parents in the same shoes as I was (and still am sometimes). It's a rotten place to be but you know you have to be there in order for your little one to reach those goals, whatever they may be.

We go back Wednesday and Friday for more modeling I'm really looking forward to it, especially after seeing how well Oia responded today with being in the spotlight. She never ceases to amaze me.

To get a taste of what CME is all about, go to http://www.cuevasmedek.com/

The videos tell all.

Wednesday, November 18, 2009

Piggies, Shoes and AFO's

Oia has had 3 PT sessions this week (one session being a make-up). All sessions this week have been GREAT. Our PT does amazing things with Oia. I recently brought up to her the fact that Oia has begun walking around the living room in bare feet; all within the last couple of weeks. Times are early in the morning before I've dressed her, nap, and after her bath in the evenings. Until now, it used to be that without shoes and AFO's on her feet she would crawl to get to where she wanted to be. Our daredevil, who loves a challenge, decided that AFO's are now optional. This is WONDERFUL but a heart stopper for Rob and I all at the same time; for several reasons. Walking in bare feet looks like an accident waiting to happen. AFO's provide Oia with flat feet and a more stable stance which helps her bear weight more appropriately throughout her entire body. Plus, with AFO's, I can trust that her falls will be backward (on her bottom) instead of forward.

So, this week, our PT decided to assess Oia walking in bare feet.

Pros of bare feet walking (my assessment):

1. good sensory

2. slow, step-through steps

3. fair amount of control

4. can demonstrate some hip extension but still needs work

5. can turn and change direction without falling

6. insight into the future (maybe?)...will she always need braces on her feet?

Cons of bare feet walking (again, my assessment):

1. questionable stability

2. heels up slightly, steps with toes

3. right foot rolls slightly inward over arch

4. needs close supervision, aka. adult needs to be RIGHT. THERE.

See for yourself...all 10 piggies in action! Pretty impressive.

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Next video is walking with shoes only, no AFO's. Same pros with shoes as walking with bare feet, but naturally more support and stability with shoes.

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And finally, walking with the good ol' faithful AFO's. This is the only way she can walk out of our sight safely and play in an adjoining room. Also, this is the only way she walks outside and in public places (still needs to hold our hands while walking outside). Hip extension is getting better and better with AFO's; in simple terms this means she is standing taller and not compensating her body by bending forward at the hip to seek stability. She still weight-bears more on the left side as right side is weaker but overall she looks fantastic!

Bottom line: SHE CAN WALK!


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Tuesday, November 17, 2009

10 Piggies!

Oia started her day with an hour of OT, immediately followed by an hour of PT. Not an unusual occurrence at our house. Both sessions went very well.

Her OT and PT leave us with therapy progress notes after each visit. A snip of her PT notes from today reads as follows: "Oia is doing wonderfully with her progress in standing and walking. Today she walked around the living room w/o falling and with only supervision. (Actually), she fell once right onto her bottom and on one occasion got up from the floor to stand all by herself."

Why is this so exciting? May not sound any different than any other day, does it?

Wrong! Today was with no shoes and no AFO's. All 10 piggies in plain view...bare feet! Steps with control and heels almost to the ground.

Amazing.

At some point very soon we will try to share a video of the new progress.

(I'm smiling.)

Sunday, November 15, 2009

Camp Righty: Home Program Update

Ever since Camp Righty has been over, we've been trying to make Oia wear her left arm splint for about 20-30 minutes each day. Trying. Putting on her splint is a two-man job so for me getting it on during the day while Rob is at work is next to impossible. The solution has been to put the splint on after each therapy session, with the help of whatever therapist is here that day.
It's safe to say she wears the splint for at least 4 days out of the week.

Today, Oia and I played with Play-Doh while she wore the splint. Usually, grasping the rolled balls and releasing them back into the container is what we practice. She did this well towards the end of Camp Righty and she still has the same precision and strength in her grasp now. This skill has come a lonnnng way.


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We have noticed Oia using Righty more and more. She is using her right hand now with more spontaneity than she ever has before. There were certain toys that we played with constantly during Camp Righty, like her bead necklaces, and she will still play with those toys using both hands. Every now and then, Rob and I find ourselves saying to each other, "Hey, look at that. She did that with BOTH hands!" We joke that she can get by with just about anything as long as Righty is involved.

Below she is trying to open the basement door to help Rob back in. That's a big stretch for her. Nice job, Oia!

Saturday, November 14, 2009

Saturday Morning at The Little Gym

For Oia's 2nd birthday, her Grandma and Grandpa gave her a semester of classes at The Little Gym. The Little Gym is organized chaos for the very young. Oia's class is for 2 yr olds. There are mats on the floors, balance beams, soft climbing structures, bars, circle time and song, and each week focuses on a different skill, such as balance, body parts, etc. I had been wanting to try these classes with Oia for a long time but I was hesitant without knowing the structure and layout of the class. I had some reservations, my hang-up, I know, but as a parent you just always want your little one to be able and do what others can do without your child's differences being the focus of those around you. I wondered if her level of mobility/ability was suitable for the activities of the class so I held off joining until she became independently mobile to avoid any of those 'heartbreaking moments'. We started attending in August (the month Oia began walking on her own), going each week for one 45 minute session. Truth be told, there is little she can't do (at least with my help) and she is willing to try everything at least once. Generally speaking, this is Oia's 45 minutes to do as she pleases; her break from the 3 sometimes 4 therapy sessions each week. It's turned out to be a wonderful experience for us. Wonderful not only for the physical challenge it provides but also for the social aspect as well.

Our typical session is Friday mornings while Rob is at work but we attended a make-up class this morning so he could see her in action. Here she reached up for the bar as I helped her right hand get a good hold. (It is sometimes a challenge for her to rotate her right shoulder that high.) Once holding with two hands, she doesn't do too bad maintaining that hold while I swing her legs out for her.

"Balance beam? No problem...as long as daddy helps me."

Oia loves to play with balls and I love that playing with balls provokes her to use two hands; often times without a verbal cue from Rob or I.

Clean-up time is one of her favorites. Here she is on her way to the ball bucket to put her ball away.

The instructor always blows bubbles for the kiddos at the end of each session. Oia has never reached out to pop the bubbles yet. I don't know if it's a visual thing or not. She generally stands among the group and watches everyone else pop the bubbles. I know it takes a lot for her to remain standing, balanced, and aware of her space so reaching for bubbles may make her feel like she is jeopardizing her stability. No biggie, we'll keep working on it.

I leave each session with a full and happy heart. I feel so fortunate that our daughter is in her own way able, and willing and can participate in such a class. What she can't do on her own, I help her do. She can't jump. But together, she jumps the highest. She can't run. But together, she is the fastest. Once again, my little teacher has taught me another lesson. Hang up all reservations. So far, she has found a way to do whatever it is she wants to do and for that I am thankful.



Tuesday, November 10, 2009

Sick Girl = Canceled Eye Appointment

Oia and I spent the weekend at our old stompin' grounds in North Carolina. We attended a friends wedding on Sunday while Rob stayed behind to hang out with my father who was spending some time at our house. Unfortunately, Oia ended up with a cold and fever the day of the wedding which slowed things down a bit. We missed out on the reception which is what I was most looking forward to. Something about seeing Oia walking on a dance floor with other little people made me so excited for her. I felt a little bummed we missed it but a sick baby takes the front seat.

We returned home yesterday. We were scheduled today to head to northern Virginia so Oia could be seen by a new ophthalmologist in hopes of getting a second opinion on an impending eye surgery. With a questionable fever still this morning, we decided to keep her home and reschedule the appointment. A little disappointing since I am in the mind frame of having this surgery for her as soon as possible and we have to wait another month to be seen. But, that's how the cookie crumbles sometimes.

The good news is that by dinner time tonight she was feeling much better and wanted to play again.

Appointment has been rescheduled for December 7th.

Monday, November 2, 2009

Hmmmm...

Today was another doctor's appointment. This time it was with Oia's neurologist (who we think very highly of).

I'll start by saying that Dr. T was so impressed to see Oia moving as well as she is and she even walked on her own into his office. He was pleased to see her using her right hand to help hold her sippy cup once she was prompted to use both hands with a verbal reminder. Dr. T said developmental progress is an outward positive of what's happening on the inside, ie. her brain activity. He asked us some basic questions...Is she eating well? Yes. Does she sleep well? Yes. Talking any? Not really, she's very vocal but not verbal. And then with some hesitation in his voice, he asked if we have observed any seizure-like activity yet. By the grace the God the answer was no. He is absolutely baffled by this. All of Oia's conditions, or brain abnormalities by medical definition align with seizures. Around 95% of kids like Oia have seizures on a regular basis and require medication. I knew her risks were high but I never realized it was that high. It makes my stomach flutter to think of this changing in just the blink of an eye. It could. It could all be very different tomorrow and seizures could be a part of our world at any moment which terrifies me. But my 2 yr. old teacher has taught me to live for today and be thankful and so that is what I will continue to do.

Dr. T reviewed Oia's charts again and MRI information and then declared something we never expected. Since diagnosis in April of '08, we were told and believed that Oia's cerebral palsy was secondary to a stroke in utero. As of today, that is not believed to be the case. For the last year, Dr. T has been digging deeper into Oia's files to study her situation and he believes with nearly 100% certainty that Oia did not have a stroke at all. She has schizencephaly (which we knew), not caused by a stroke but rather as a result of a faulty migration pattern of some brain cells to their final position in the brain. This disruption happens in just the very early days of fetal development. Why it happened is a mystery.

This is not really better news or worse news, just parallel news in our opinions. I will tell you though for me, as the one who carried this baby for 9 months, this news lifted what would have been a lifetime of guilt off of my chest. So, in a sense, maybe this was good news for me. I can't control the fact that Oia's brain cells migrated incorrectly but I felt guilt that she had a stroke. Thoughts of exercising too hard, working too hard, stress, etc. consumed me. I carry (carried) a lot of guilt and blame for the challenges that Oia faces. We sing the praises of a compassionate doctor who has not stopped following and studying Oia to determine the true root of her disabilities.

We determined today that unless something changes, there is no need to schedule another EEG at this time. Please keep her in your thoughts and prayers.

Saturday, October 31, 2009

A BEE-utiful Halloween

Yesterday we experienced the thrill of trick-or-treating on the Lawn at UVa. Each year the students of the university host the event which is free to the community. We debated whether or not Oia was ready for something like this since she is still new to the walking thing, especially knowing the crowd that this event brings each year. The weather was warm and Rob works next to the Lawn so we decided to meet him there and give it a go. She walked holding our hands when the crowds were tight but when on the grassy lawn we let her walk as she pleased. This was her night. We were tickled to see our 'bumble bee' experience Halloween on her own, walking among other bees, dogs, ducks, ladybugs, cowboys and witches. We all had a wonderful time and will certainly venture there again next Halloween.




And if Oia could talk she'd tell you that the juggler in the crazy hat was by far the best part of her night. She stood there mesmerized for what felt like an hour watching this guy. It's the little things in life, right?
Final picture is from the pumpkin patch at Belvedere Plantation. We went there last weekend with Oia's friend Elena (who also has cerebral palsy) and her family. Notice that Oia is holding the vine with both hands, thanks to a verbal reminder.





Tuesday, October 27, 2009

Eye Surgery

Unfortunately, that's what is next up in line for Oia.

Ever since Oia has been in glasses (since 4 mo. old) we have been monitoring her eye condition very closely. It hasn't been until the last 6 months or so that surgery has even been a topic of discussion at her eye appts. But, what was once in the distant radar is now right in front of us.

We began 'patching' Oia's dominant eye, her left eye, via Atropine drops in early summer. We went to the doctor after 3 months of dropping and there was little to no change in her right eye. Dr. recommended that we give it another 2 months of dropping and see what happens. Well, we went to the doctor yesterday and same status...little or no change in her weak eye. Weak eye still remains inward most of the time and she can't seem to bring the eye over far enough to use her peripheral vision at all which means left eye is doing all the work of both eyes. Not good. So, doctor was ready to schedule Strabismus/Eye Muscle surgery yesterday saying it was "no big deal, a quick, minimal, out-patient procedure, brief recovery". But hold up here...since when is surgery of any kind no big deal ... maybe when it's NOT your child! Oia will go under with anesthesia and her eye will be opened. Seems like a big deal to me. I realize we must do this for her to enhance her chances of seeing the world the way the rest of us can. However, we have our feet on the breaks a bit right now as we wait for our next appt. with a new opthalmalogist in northern VA. We have heard fabulous comments about this doctor and his practice so we will value his opinion on the suggested surgery. Who knows, we may even transfer Oia's eye care over to this practice if we gel more with this doctor than her current one.

So surgery it is. But not until we get some questions answered. Is this the only surgery for Oia's eye conditions? Is this the right age or the right time to do the surgery? What are the risks? How soon until she undergoes the same surgery again since research shows the first round doesn't usually hold for most kids?

Second opinion appointment is November 10th. More to come then.

Friday, October 23, 2009

Camp Righty is over...

so what better way to celebrate than with a comfy t-shirt that reads "I Survived Camp Righty"!? Hooray!
The final day of constraint therapy was yesterday, making Camp Righty a total of 34 days but who is keeping track? Today we returned for a final evaluation but Oia was acting as a typical 2 year old and wanted to play with the therapist's pens and paper as opposed to the toys presented for the eval. I will speak for myself though and say that I am pleased with her progress, though seemingly small to most. Every ounce of progress gained now is huge and key to the future capabilities of her right arm and hand. This round of CIT was just the beginning to many years of therapy and practice to becoming a girl with bilateral functions. This will not be our last Camp Righty.

Some things I have learned or already knew but was reminded of during this process:

1. Oia is left arm dominant. That we know. She can play with her left arm OR she can play (kind of) with her right arm but not together. When Lefty is engaged, Righty is generally clenched/fisted and inactive due to 'overflow' and increased tone to the right side. Kids with CP do not have selective muscle control which means when muscles in one area of the body are engaged, the rest of the muscles in the body are triggered and flexed as well. During CIT, Lefty was 'shut down' which allowed Oia the ability to concentrate on right handed movements without the constant overflow. Cast off, now we're back to the overflow.

2. No doubt Oia has improved strength, grasp and control in her right hand post CIT. We see it and her therapists see it. I remember on the first day of CIT, I placed a snack into Oia's hand and asked her to take a bite. She tried. She tried really hard. She had to look at her hand, think, and very slowly tried to bring the snack to her mouth but just couldn't quite get it all the way there. She had to lower her head and lean down to the snack to 'meet it in the middle' at her chest. She did this for two bites before she dropped the snack and realized that the effort was not worth it.

Last day of CIT was a huge improvement. She not only could pick up her own snack now, but she was able to bring it all the way to her mouth to eat it and with little to no effort. When she finished with one tortilla chip, she reached for another. Perfect.
3. The therapies we are doing now are forging pathways for later. I have to keep reminding myself this. Progress may seem minimal where Righty is concerned but it's all about training the brain. When Oia becomes of an age where we can explain to her our goals and she can give input towards those goals then hopefully things will be easier because of what we are doing now. I guess that saying "if you don't use it, you loose it' applies here.

We will continue to work on right handed and bilateral play every day. I will still continue to say "where's Righty" and "use two hands" 18,000 times a day. Thankfully, she is very receptive to verbal cues and that is usually all it takes. We will follow through with CIT's home program and wear her left arm splint for 20-30 minutes each day (if not longer) and for all of our OT sessions. She'll get it. Not now, not next month, maybe not next year, but she will get this. I have all the faith in the world that she can and WILL get this.

Oia, we are proud. Proud of you, proud of your patience, proud to be your parents. Keep up the hard work.

Sunday, October 18, 2009

Conquering Extreme Terrains

Walking indoors is a fairly safe venture for us these days if corners of furniture and other dangerous surfaces/edges are covered, blocked, etc. We still hold our breath though while Oia walks around the house but her protective responses have continued to improve over time thus making for a much safer fall. Most of the time Oia is in control enough to fall on her bottom...most of the time...which does make it easier for us to back off a bit and not feel like we have to be RIGHT. THERE. One of her current IFSP goals is to walk indoors, room to room, with only supervision; meaning Rob and I can be in another room watching while she wonders into a connecting room. Really though, we joke that this is much more a goal for Rob and I as her parents, not her. She is fearless.

However, walking outside is a totally different story but still, she is doing AWESOME. Grass, mulch, rocks, pebbles, and not to mention steps, inclines and declines; are all extreme terrain in our world. We have spent A LOT of time in the last month or so walking outdoors on all different surfaces.

This first vid shows Oia walking on flat ground with low grass.

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The second vid is Oia walking slightly uphill on gravel. She usually can maintain her balance for a few feet on gravel but doesn't always stay walking in a straight line as the gravel shifts her balance and direction which makes her fall easily.
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The last video is the most recent one. This is our paved driveway that has a significant incline. We have practiced this for months with me having to hold onto her one hand but she's finally getting it on her own now. Weight shifts for kiddos like Oia don't come easily making slopes and hills very difficult to maneuver. For us, up is doable (kinda) but down is a current no-go...an instant faceplant.
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This is the driveway slant from the side. Doesn't seem like much in a photo but I'm sure this feels like a mountain to Oia. Walking this also provides her calf muscles a good stretch which is important.

And all of that in a cast! Not too shabby.

Friday, October 16, 2009

Camp Righty...Extended!

Today was supposed to be the final day of Camp Righty. Supposed to be. Our CIT therapist, Rob and myself, all agreed that now is not the time to end the party. I would have never imagined saying this 4 weeks ago. However, Oia has made tremendous progress on so many levels that we decided to give this one more week of full constraint. After this additional week is over, her cast will be removed and cut below the elbow and turned into a splint for easy removal. The splint will become part of our home program post-CIT. The goal is that Oia will wear the splint a couple hours each day and for all of future OT sessions. We need to continue the right handed and bilateral play long after CIT is over or else the gains she worked so hard on during the casting period could very easily be lost.

Also today, we met our CIT therapist off site from KCRC to have a session at Virginia's Discovery Museum. The activities must be new and engaging enough for Oia to be interested in right handed-play so a different environment was just the thing. She used Righty to play numerous musical instruments, climb steps, roll balls, touch various textures, push buttons and carry small, lightweight objects to place into baskets.

This video shows Oia grasping foam letters and carrying them to the baskets for release. Her grasp now is accurate and she has built up the endurance to do this several times in one activity. She is also able to release the letters with control and accuracy. In times past, prior to CIT, objects generally needed to be placed into her right hand by an adult and then she would either pull it out with her left hand or her grasp would be so weak that her object would just fall out after a few seconds. What a difference 4 weeks has made and look how proud she is.

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Another reason to continue Camp Righty...

She has finally, for the first time ever, voluntarily chose to use two hands to hold an object. In the past, if an object was too large for her to pick up with one hand, she generally would leave it and go to another toy. Here she is trying to put the ball into a hole with both hands.


Lefty is holding the guitar and Righty is playing. Again, two-handed play.


We are tickled with her progress, not to mention her patience. She continues to amaze us.

Tuesday, October 13, 2009

Happiness is...

knowing our little girl has had a good day AND a good laugh.


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Monday, October 12, 2009

Camp Righty Update

We are in our fourth and final week of Constraint Induced Therapy (CIT), aka "Camp Righty". So far, so good. Oia is doing amazingly well. I had set myself up for a hair pulling month but Oia has done a fantastic job of proving me wrong. She has been so tolerant of right handed play and has made REMARKABLE gains. Her grasp, strength, accuracy, and endurance have all come quite far in just 3 weeks. Our CIT therapist said during today's OT session that progress has been 'beautiful'.


We've spent the last 3 weeks (as we did before CIT began but more of a focus now) incorporating right handed activity into our daily play and routines. Our days have been intense but enjoyable. Here is Oia holding on with Righty to stabilize herself while getting a wheelbarrow ride.

And then Righty found some dirt...great sensory feedback!

Sunday, October 11, 2009

Milestones and Therapy Schedule

Oia’s Developmental Milestones

Independent sitting – 8 months
Rolling over - ~15 months
Transitioning from lying on back to sit – 16 months
Creeping/commando crawling – 19 months
Reciprocal crawling (crawling on hands and knees)– 20 months
Cruising – 21 months
Climbing up stairs – 22 months
Sit to stand (from chair) – 20 months
First steps with forward walker – 18 months
First steps without assistance – 21 months
Controlled walking with close supervision only- 24 months


Current Therapy Schedule

Physical therapy 2x/wk
Occupational therapy 1x/wk
Speech therapy 2x/mo

First Constraint Induced Therapy (CIT) - 10 months old, duration of 21 days, through UNC
Second CIT - 25 months old, duration of 30 days, through Kluge Children's Rehabilitation Center, UVA

Rewind to the Beginning

Better grab a coffee...

Rob and I were excited and full of anxiety once we found out we were having a baby. The pregnancy was planned and without complication. We decided right away that we would wait until “Peanut” was born to learn the baby’s gender. Finally on August 22, 2007, after nearly 41 weeks gestation, our daughter was born. We named her Oia Lee. When our midwife flopped her on my belly immediately following delivery, we completely forgot the fact that we had no clue what this little being of ours was…a girl or a boy? I remember looking at this baby on my chest and feeling very surreal, almost numb. Gender was so unimportant. A curious nurse in the room blurted, “Well, what is it?” Rob blurted back “IT’S A GIRL!” but only after he lifted her leg not once but twice to confirm. (All along he had been secretly hoping for a girl.) Oia weighed 6lbs 3oz. She was slightly small for a full term baby but not completely out of the ordinary. Delivery was smooth and when I tell people that I enjoyed every minute of it they question my sanity but I truly did. She came out screaming and immediately latched on right away. Apgar scores were 8 and 9. She was perfect. We were sent home from the hospital two days later with smiles smeared across our faces.

Since babies spend the majority of their first few weeks of life asleep, we didn’t notice our first hallmark sign that something could be wrong. It was about two months later when we began noticing that Oia’s pupils were unevenly dilated. One appeared larger than the other and at times her eyes didn’t seem to be aligned together. Her left eye seemed to veer outward. At one of Oia’s well baby visits I remember the pediatrician asking me if I had ever noticed that Oia did not look at me with both eyes. I think I answered by saying something like “Yeah, but I just assumed that all new baby’s eyes were like that” and then she replied by saying that I was probably right. She said newborns have to ‘learn’ to control the muscles in their eyes and that we just needed to keep an eye on things. Done. Easy enough.

Another month came and went. No changes with her eyes. Sometimes her eyes crossed but mostly they strayed outward and seemed to work as two separate eyes, not as a pair. Our pediatrician referred us to a wonderful ophthalmologist to further assess this situation. I wasn’t sure what I thought or how I felt about this but I was glad to know that we would have answers soon and that surely this situation would have an easy fix. So, around 4 months of age, Oia was seen by Dr. W. We immediately fell in the love with this man. He was older in age, very experienced and compassionate. He made Rob and I feel as calm and as comfortable as possible. A big deal for new, now scared to death parents. Amazing as it is, he performed an intensive eye exam on our almost 4 month old and determined that she desperately needed glasses. He warned us they would be ‘thick’. Her visual diagnosis was intermittent esotropia. It felt like a blow at the time but I kept telling myself that if this was the worst of things we ever had to deal with then we could consider ourselves lucky. Glasses. Big deal.

I recall the day we went to the eyeglass shop to pick up her new glasses. I felt weak. Rob was much more excited than I was. Such a tiny, flawless face was going to be covered up by ‘thick’ glasses. I held her in my arms as I let her look over my left shoulder so that Rob and the optician could slide her new glasses on. She was most calm in my arms so this made since. She was still and patient. I couldn’t see what was going on behind me but a few seconds later I did hear the optician say, “There we go!” I pulled her from my shoulder and brought her in front of my face to take a look myself. And in that very moment, she looked at me (probably clearly for the very first time) and smiled the biggest smile I had seen yet. I lost it. That smile spoke to me. It said “Mommy, I need these glasses. It’s going to be alright.”


My very first unexpected lesson; find the silver lining. There is one in every situation. My daughter has glasses because she CAN see, not because she can’t see.

I still had a love-hate relationship with those glasses for some time. She did look cute as pie in them and after all they were pink, but still, they were glasses. I was nursing at the time and they seemed to always be in the way. I enjoyed nursing and the fact that something was interfering with this quality time annoyed me. I ended up just taking them off for feedings.

As Oia began to see her new world, she wanted to start exploring it. She immediately began reaching for toys and faces in front of her. This was so reassuring to witness Oia come alive as she seemed more alert and happy now with her new ‘view’. But soon after, a new issue, another hallmark sign that something may be wrong began to surface. Oia was only reaching with her left arm. She seemed to rarely, if ever, use her right arm at all. It remained close to her body and loosely fisted. I didn’t hesitate to call our pediatrician. She had no answers for us (though she probably had an idea) so again we were referred to another doctor; a neurologist. Our appointment was scheduled in a timely manner and we were nervous, to say the least, about the appointment but again, I was sure this was a problem with another easy fix. I remember sitting in the waiting room of the neurology department seeing all of the ‘sick’ kids. The ‘special’ kids. Were we in the right place? Our daughter was fine…it was just her arm that didn’t work, right?

Meeting the neurologist and the nurse practitioner for the first time was a weird experience. The room was cold and uninviting. I felt in my heart at that moment that the outcome of this visit wasn’t going to be a good one. Oia was examined first by the nurse practitioner. She asked a few questions and we answered them the best we could. The NP left and then the neurologist came in next to examine Oia. Both examinations were brief. During the examination with the neurologist we mentioned that Oia had a period of what seemed to be an exaggerated startle reflex. The ‘startles’ came randomly and without cause. The neurologist left and said he’d return in a moment. Waiting on someone to return to our room was dreadful. Time seemed to stand still. Once the neurologist finally returned, he laid it on us. He handed us a ton of bricks. He flipped our world upside down. I guess he thought there was no gentle way to deliver the news. As best as I can remember, this is what he said:

“There are 3 things you need to familiarize yourselves with. 1. Developmentally Delayed 2. Mental Retardation and 3. Cerebral Palsy.” There it was. The end of our life as we had always known it. Over. Rock bottom. Upside down.

Our Oia? Cerebral. Palsy. Two words that have taken me nearly two years to feel comfortable enough to say aloud. Oia was diagnosed as a spastic quadriplegic with microcephaly.

The rest of the conversation with the neurologist was a total blur. All I remember at that point was sitting in that cold room, holding Oia, and crying so hard that I shook. I could see Rob through my tears and he was sobbing, holding his head, shaking. It was THE WORST day of our entire lives. It was not fair. Not fair for Oia. What did she do to deserve this? It had to have been my fault. Just 7 ½ months ago we were upstairs in the same hospital meeting our ‘healthy’ baby girl. Proud. Smiling. Laughing. Overwhelmed with love. Feeling speechless. In awe. Now we were completely speechless for an entirely different reason.

That night Rob and I were zombies. We never stopped crying. We never stopped holding each other or Oia. We needed her close to us. We even kept her in our bed that night though we never really slept. All we could do was think of the future and cry. Will our daughter ever walk? Will she talk? Drive a car? Will she be able to live on her own? Would she go to college? Would she find love and marry one day? Would she ever be called ‘mommy’? Our thoughts took us to dangerous places in the distant future. It was a brutal place for our weak hearts to be.

Unexpected lesson #2: Take all things day by day, one step at a time and embrace each moment you have. All you have is now.

And unexpected lesson #3: We are not in complete control of our lives. We would have never chosen this for our daughter. We are at the mercy of God’s plan. I am ashamed it took an event such as this for me to see it.

The next step was an MRI which was scheduled for a few days later. Another cruel experience. Oia was to ‘nap’ through the MRI. That went over like a lead balloon. For those of you who don’t know, an MRI is quite loud. We had to return the following morning to try it all over again, this time with sedation. Better, but Oia still needed two doses of sedation to lie completely still for the scan. The MRI showed static schizencephaly with a present, but thin, corpus callosum. This was attributed to an intrauterine stroke which occurred early in Oia’s development, probably within the first trimester of pregnancy. An EEG was also scheduled following the MRI to understand Oia’s brain activity and hopefully explain those random startles which came and went in a month’s time. The EEG showed signs of irregular ‘firings’ in her brain so in addition to cerebral palsy, she was labeled as epileptic as well. We were given a prescription for a seizure med but we were told it was up to us whether or not we gave it to her. She didn’t really need it but we were told it wouldn’t hurt her to take it. The doctor mentioned that the med could make Oia irritable. We put that prescription in our back pockets and chose to not start her on it. We needed that smile of hers to get us through this mess and with no current seizures…we passed on medicating. Thank God that no clinical or sub clinical seizures have been observed to date and the startles have not come back and we pray this doesn’t change.

So now what? Our plates felt full. Our hearts felt heavy. We felt the need to jump on any and all opportunities that would benefit our already delayed daughter. We immediately contacted our states Early Intervention Service (we lived in North Carolina at the time) and the evaluations began. She qualified for physical and occupational therapy. I would rush home from work to pick up Oia from the sitter in time to make whatever therapy appointment we had. It felt like a rat race for a long time. Thankfully, as a teacher you have your summers ‘off’ and it would be spring soon. I wanted that school year over sooo badly and I wanted to NOT return to teaching in the fall. Before diagnosis, I cried driving to work everyday leaving Oia behind (even though she had a fabulous sitter) but now after diagnosis there was NO WAY I could justify spending the majority of my day in a classroom of 20 some children when I had my one child at home who needed me.

Summer came and we just tried to relax and cope with our new life. I still kept hoping and praying for a way to stay home with my daughter by not returning to the classroom in the fall. We began Oia on her first Constraint Induced Therapy (CIT) at The University of North Carolina. Oia’s left arm was casted for 21 days to encourage her to recognize and learn the use of her right arm and hand. She was already showing signs of developmental disregard for that side. The CIT program made a difference in that she learned she could move her arm and at the very least she learned it was THERE. That was a big deal.

Remember unexpected lesson #3…we are not in total control of our lives…we are at the mercy of God’s plan. There was a big change in our ‘plans’ which was no doubt an answered prayer. Early that summer, Rob received a call from a recruiter to run the daily operations at The University of Virginia Transplant Center. After 8 years in his current job, he was eager to start a new venture which made the professional decision to move very easy. Even though this was my opportunity to stay home now if we decided to make the move, it was still a very hard decision to make. Rob and I can make the most out of living anywhere but now we had Oia and her needs to consider. That changed everything. She received excellent care through NC’s EI Services and UNC but what care would Virginia provide? We spent a lot of time researching this and came to the conclusion that The University of Virginia’s Kluge Children’s Rehabilitation Center and Virginia’s EI Services would offer all the services that met our needs. Decision made. Contacted a realtor. Bought a house in Virginia. Moved 2 months later. The week that my school resumed for the ’08-’09 school year was the week we moved into our new Virginia home. God works in mysterious ways. A stay-at-home mommy at last!




**Update: In early November, 2009, Oia's neurologist at UVA found that Oia did not suffer from a stroke during pregnancy. This doctor concluded that she has cerebral palsy secondary to Schizencephaly which is not caused by stroke, instead caused by a faulty migration pattern of brain cells in the early weeks of fetal life, causing a cleft to form within her brain. We have been told that Schizencephaly is not genetic but rather "just one of those things".