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

Tuesday, March 30, 2010

Patched Princess

I sometimes refer to Oia as Miss P. It's just been one of those names that has stuck since those early infant days. Seems fitting...P stands for a number of things that Oia is to me like Perfect, Pretty, Patient, Petite, Persistent, Pistol (on occasion), and a couple others but now a new one for the list...Patched Princess!

Patching is going so well, much better than ever expected.

I'm not sure what makes me more happy...bidding farewell to those nasty Atropine drops or the simple fact that Oia has dug deep for more tolerance and she's willing now to wear the patch as needed each day. Since patching was recommended a year ago, the idea was a lead balloon, hence the alternative drops. Life with an eye patch is much more pleasant and manageable. Outside time in the sun is not so dreadful for Oia but rather enjoyable again. Having the use of just one eye, as you can image, does present some added physical challenges for her, but overall she seems unfazed by the patching. A good sign in my opinion.

Patch time immediately follows nap. The goal is two hours of wearing. I have been a bit obsessive about tracking the time Oia wears the patch and make note of time worn on my calendar. Time worn varies each day but my philosophy is that every effort and every minute counts. Basically, it comes off when she takes it off. There is no use in making this a battle or we won't get any positive from it.

Day 1 was 45 min. worn. Day 2 was 1 hr 45 min. Day 3 was 2 hr 45 min. Day 4 was just one hour but considering she exceeded the 2 hour suggested time the day before I didn't worry about it. And Day 5, yesterday, was 2 hr 30 min. As time goes on and this becomes more of our routine, I know I won't be so obsessive. But, in the name of Miss P's eyesight, obsessive is a good thing!

Saturday, March 27, 2010

Easter Egg-stravaganza

This afternoon we enjoyed a sunny but slightly chilly spring day at a local Easter event. Oia's friend Celia and her family joined us along with Oia's Aunt B. There were horses to ride, a bouncy house, face painting, and of course, an Easter egg hunt. Oia loves to be in the mix of people and new experiences so things like this are right up her alley. She ends up being very quiet in these types of settings though. It seems that observing and taking it all is enough for her little self to handle at one time. She was all smiles, a few laughs, but little chatter. That's okay...I know what she's thinking.

We took Oia to the bouncy house first. It's not the most ideal situation for someone like Oia but Rob and I have NEVER prohibited her from doing something because of ability (or maybe lack thereof). One of us assumes the role of spotter, carrier, whatever it takes so that she too can enjoy what others her age are enjoying. Today it was the bouncy house. I carried Oia up to the door as the lady motioned the next round of crazies to enter. (Mind you, no parents were going in with their kids.) I kindly told the lady that I would need to enter and help my daughter once inside. She looked completely confused, said nothing in response, and I sensed she was seeking an explanation. So, I said, "She'll need my help to stand and bounce inside...(still no comment from lady)...she has cerebral palsy." Now the idea of going inside with her was okay but she tells me that Oia and I can go in the next round by ourselves. Um, NO. I told the lady that Oia should and can be in there with other kids that I just needed to be able to help her. She gave instructions to 'stay on the side' once we got in there...with the other kids. I was a little shocked by this lady's mentality. Oia ended up sitting on her knees for most of the time and enjoyed being bounced around by the other kids. Once our time was up and I crawled out, the lady said to me "That was a good idea, Mom. She did need to be in there with the other children." I replied, "Of course she did, that's how she learns."

The rest of the Easter event was uneventful in a good way. She LOVED riding the horse and even said 'Go-Go' once in the saddle. She HATED the clown and was not so sure of the Easter Bunny. She got a bunny painted on Righty and managed to pick up a few Easter eggs to fill her bag before they were all snatched up. It is such a joy for Rob and I to see Oia engaged, happy, and loving life. Her life. We are so lucky.

What better way to end a fun afternoon than with a ride back to the car on daddy's shoulders!

Thursday, March 25, 2010

Proven Wrong

Guess who wore a patch over her eye for 45 minutes today?!

Oh yes, she did...

...and she's still smiling!

It took a lot of performing and distracting on my part but that's okay. I have a repertoire of obnoxious voices, plenty of silly games to play in the mirror, and one really cool cell phone that is normally off-limits...except now for eye-patch time! Plus, a very long wagon ride in a wagon full of toys including the named cell phone helped keep her mind and hands occupied enough to buy us some more time before she finally yanked the patch off and handed it to me. Translation: "I'm DONE, take this."

Hopefully she'll be more tolerant with each new day and we'll make it to the suggested 2 hours. She sure does have a way of surprising us one way or another, every single day.

Wednesday, March 24, 2010

Vision Update: Amblyopia

It's been roughly 2 months since Oia's strabismus surgery. Yesterday was another follow-up appointment with her ophthalmologist.

Things seem to be going along as well as they can. Eyes are straight meaning strabismus is corrected, Dr. P is pleased, we are pleased, and Oia seems pleased. But, how well can she see? No one knows.

What we do know is that unfortunately, Oia suffers from Amblyopia and we are still taking an aggressive approach to better this. Amblyopia is one of the most common vision disorders in children. It's responsible for more vision loss in children than all other causes combined. Amblyopia may be defined as a reduction in visual acuity without any structural abnormality of the eye itself, resulting from abnormal visual input early in ones life. Simply put, Oia's right eye is 'healthy' but the communication pattern between her eye and brain is faulty and/or interrupted so her vision is compromised (thank you again to that little hole her sweet baby brain).

What to do now? Just continue patching. That's all we can do. That's what we have been doing for the last year now; patching via Atropine drops. Atropine dilates the eye and a dilated eye as you may know is a blurred eye. This is the only alternative to Oia actually wearing a patch over her eye (she pulls a patch off faster than I can put one on) but it's not as effective. Drops, however, are not the best solution this time of year. Being outdoors with a dilated eye is not at all enjoyable to Oia to say the least. Understandably so. She lowers her head as her eyes are extremely sensitive to sunlight, she becomes even more unsteady on her feet, falls much more, and she is most fussy or clingy on the days that I have to put a drop in her eye. I hate it for her. Hate it. So, Dr. P gave us two options: 1. try again making Oia wear a patch on her eye for just 2 hours a day every day or 2. continue using Atropine, 1 drop every 3 days. The plan is that she will allow me to cover her eye with a patch but I have a strong feeling that many, many more of those nasty drops are in our future. (sigh)

I asked Dr. P how long we have to patch her eye and he said until she is of age to actively participate in an eye exam...4, 5, maybe even 6 years old. That's a long darn time.

Amblyopia is vision loss and when it's gone, it's gone for good. It's serious. Corrective lenses do not improve this. Patching is our only hope to saving what sight she does have left in her right eye so we will battle the beast and continue patching any way we can...even if it is with drops.

Oia in her "Hollywood's", which she also refuses to wear.

Monday, March 22, 2010

New Right Brace

After 3 weeks of waiting, Oia and I finally picked up her new AFO today. It's been at least two months now that she has been walking 'free' without her orthotics. It's time to get back into them.

The new brace is different than her previous pairs. Previous pairs were very limiting in regards to ankle movement, functioned much like a ski boot (but this is the kind of support she has always needed for stability). These pairs kept her ankles positioned at 90 degrees which kept her heels as close to the floor as possible. These are the braces that Oia learned to stand, cruise and walk in. They were life changing.

New AFO is for the right foot. Lefty is a free spirit these days. Lefty has developed enough 'natural' movement that her orthotist felt a brace on that foot would hinder any more natural movements to develope as she grows. Left heel can come to the floor while right heel can not at all. New AFO is different than older versions because it is hinged to allow Oia's ankle more range of motion. She will no longer feel as though she is walking in a ski boot and her gait will not be as heavy in the new, hinged brace; shown below on the right.

Unfortunately, getting shoes to fit over braces is no easy task to say the least and now getting just one shoe to fit is even more of a challenge. Know of any shoe stores that sell only a shoe? We found a shoe (rather a pair of shoes) today to fit over the new brace but they didn't have her size in the store. Imagine that. Waiting on the ordered pair to arrive and then we have to take the right shoe to our local shoe repair shop so that the shoe's velcro straps can be lengthen to fit over the bulk of the brace. Hopefully, if all goes well, she should be peelin' out in her new AFO and shoes by Easter.

Tiniest AFO's in the first picture were Oia's very first pair, worn around 10 months of age.

Wednesday, March 17, 2010

Monday, March 15, 2010

CME: Stepping In and Out

As I've mentioned before, maneuvering steps and the act of stepping over an obstacle are currently huge focuses in PT. Oia has been doing a fabulous job at stepping up, stepping down and stepping in and out of the various CME set-ups with minimal assistance.

These videos show Oia stepping over and into the middle of two planks, then stepping over and out again. This is quite beneficial for Oia in many ways. First, she must be able to maintain balance while shifting ALL of her weight onto one leg while the other leg (the lead leg) has to lift and go over the plank. Then, she has to be able to equally shift weight back onto both legs so that she can remain standing and do it all over again. In addition to shifting weight side to side, Oia must be able to lean and shift her weight forward enough to make it over the planks. Side to side shifts and forward shifts at essentially the same time....quite challenging to say the least.

First video... Oia is leading with her preferred leg, the right one. Although the right leg is her weaker leg, it is easier for her left leg to bear all the weight while she leads with the right. Make sense?

Last video... Oia is now leading with the left leg, shifting weight onto her right. This is the hardest shift for her to make but she seems to handle it with some ease.

Note that our PT is providing Oia with a greater challenge by only supporting Oia at her ankle on ONE leg. The lower the support, the harder Oia has to work. I witness Oia doing CME every PT session and then some and it's still amazing to me each and every time how direct and effective this therapy is for her.

Thursday, March 11, 2010

Just For Fun

WARNING: The images you are about to see may only be the stuff our family cares about. The images in this post do not contain any information pertaining to special needs and are purely for entertainment value only. They feature glimpses of a little girl who enjoys smiling, seeking ways of fun, and who has an overall zest for life. Viewer discretion is not advised.

By the way, has anyone seen Oia?

Disclaimer on the following video...
Rob taught Oia where her butt is in just a matter of minutes one evening before her bath. She thinks it is just hilarious. Listen closely as she even tries to say the word. And for the record, butt is not necessarily my word of choice for that part of the body (I would have preferred bottom or bum, or toosh even) but that's the difference between mommies and daddies. Meanwhile, I've been trying to get her to learn red from yellow for weeks now and to no avail. Clearly, my 'lessons' must not be as interesting as Daddy's.


Monday, March 8, 2010

The Park

Normal day. Oia had an appointment with her pediatrician in the morning, we returned home, ate lunch together, then she took her usual nap. After she woke, we went to the park to enjoy some sunshine and to breathe in deep the fresh, spring-like air.

Nearing the park parking lot, I see a sea of minivans and suv's which means the park is full of kids and moms. Then it hits me. That feeling you get when you're about to walk into a new class with new faces or even the feeling you get when you're about to have a one-on-one meeting with your boss for some reason or another. Your stomach flutters and a twinge of anxiety tickles your insides. That's the feeling I got today and it came out of what seemed like nowhere. I wasn't ready for it at all.

Deep breath. We made our way past a few people and headed to the swings.

I tried to figure out this surprise attack of emotion as I shared the feeling with Rob once he got home from work. He understood me but we have no cut and dry answers. Feelings just have a mind of their own.

We have a daughter who is more capable than incapable. Her abilities outweigh her disabilities. Thank God for that. But, there's something about being at a place as freeing as the park which makes my stomach heavy every time. Kids running wildly, interacting, screaming, chasing, walking through the mud, jumping, rolling down hills, riding bikes, kicking balls and the list goes on and on. Moms mingling at the picnic tables, chatting with other moms, on cell phones, noses in a book, walking the track while kids play, just relaxing.

Then there is Oia and I. We play together. Therapy always in the back of my mind. Her safety my number one priority. I'm a hovering presence over my daughter, especially while outdoors. Not by choice but because I have to be. Her well being depends on it. A serious fall for her could very well be a setback. She is not independently mobile outdoors and there is very little she can do at the park without me. I wonder what other moms are thinking of us. I shouldn't but I often do. Do they think I'm being over-bearing, too cautious, or limiting my daughter's freedom in any way? Are they thinking, "Geez, that mom needs to back off a bit and relax! Let the girl play!"

Oia's disabilities may not stand out at first to bystanders or easily seen from a distance since Oia is not in a wheelchair or in need of a walker anymore but the park reminds me every time we go there that we are in fact different and we always will be. Playing outdoors is a physical challenge. People do stare. Kids stare too but at least kids are not afraid to ask me questions and maybe if adults weren't so afraid to ask, I wouldn't feel so anxious.

With all that said, I love our story and I'm proud of it. Our life is good. Actually, it's better than good. Our daughter is THE best. But life in the special needs world does throw you for an emotion loop when you least expect it and you just have to take it as it comes and deal with it, so I've learned.

So, today I dealt with it. Looking forward to tomorrow.

Friday, March 5, 2010

Mission: Steps

Steps...extreme terrain in our world but thank goodness our little daredevil loves a challenge.

Last weekend Rob, with the help of our friend Jason, installed another half-pint sized handrail in our home. Oia loves the challenge of steps and would rather spend ALL DAY playing around on them if I only had the patience to let her. The act of stepping up and down, alternating legs and shifting weight appropriately, is a huge part of Oia's IFSP goals right now so she does a lot of CME in PT that are geared for this specific skill. She is certainly getting stronger by the week.

In the video, you'll see she is stepping up the steps with her body parallel to the wall. This is what she figured out on her own (and this handrail has only been up now for one week). The handrail is on her right side which means she MUST involve Righty (her weaker side). She does a super job of using Righty but still feels the need to secure herself with Lefty which is why she turns her body and holds on with both hands. Fine with me, whatever works...just proof there is more than one way to get to the top of the mountain.


And the stepping down...not too shabby. I always hold her right hand while she and I step down together (for safety reasons of course) but this time Rob stayed within reach and let her do this all her own. She is something else.

Tuesday, March 2, 2010

One Brace

I took Oia to see Dr. R today, her orthopedic doctor. He's the go-to guy when Oia needs new braces and we schedule with him every 6 months for regular check-ups. Kiddos like Oia have to be monitored closely due to the negative effects that bone misalignment and irregular muscle tone has on a palsied body. Thankfully for Oia, her degrees of misalignment and compensatory strategies are very minor but still warrant full attention.

Her current AFO's are no longer the right fit. Too small, too tight and they limit some natural movements that her feet and legs have developed. In fact, she has learned in the recent months how to walk reliably around the house without them. She hasn't had her feet in AFO's for over a month! She can walk balanced and bare foot but we keep shoes on her feet for most of her waking hours. Her shoes have a sole insert to support her under-developed arches but currently this is the only orthotic support she has.

But let me be clear here...her gait is not typical. Oia walks toe-heel or toe-sometimes heel, not heel-toe like you or I. She can bring her left heel down completely to the floor most of the time while standing still. Right heel though is still quite high. The good news is that after Dr. R examined, stretched, and re-examined Oia again, he decided she did NOT need a brace on the left foot AT ALL. Oh my! Only her right foot will require a brace. I'm amazed.

And something else that amazed me today...Oia has grown 3 inches since June! Rapid growth can be cerebral palsy's worst nightmare as the bones grow and lengthen making the muscles pull tighter which in turn limits movement but Oia's tone is still quite manageable and she has full range of motion, especially while relaxed. Dr. R said her rapid growth right now is nothing to worry over but we must continue stretching as often as possible. This is one area where the long term must be kept in mind.

So, Oia was casted right away for her new brace following the appointment. Her new AFO will be hinged to allow her foot a more full range of motion. Should get the new brace in about 2 weeks.

After the appointment, Oia and I headed to our favorite kids shoe store at the mall to get her new shoes to wear for CME. Like her braces, she has outgrown her shoes too. (Oia does not wear AFO's for CME.) I found a summery, lightweight pair that should be quite comfortable for her. While checking out, I told the girl (who has helped me numerous times) that I'd be back for another pair as soon as Oia's new brace was in. I told her the shoes we bought today were for therapy only. She then asked me, "Oh, so will therapy fix her legs?" I told her no and that Oia has cerebral palsy. With eyes the size of Texas she said "Really? I would have never known. I just thought she had some issues with her legs." We chatted a few minutes longer as she shared about a young boy she once knew who had CP and some of his many struggles (immobile, seizures, feeding tube, etc) and then Oia and I began to walk out. As I was leaving she tells me how 'lucky' we are and how 'patient' I am with Oia. She told me it takes a 'certain kind' of parent to do what I do and my reply was simple....

"I'm just doing what I hope any other mother would do."

(This recent photo of Oia shows her flat left foot but high right heel. She swiped a wooden spoon from the counter to stir the dog's food and water. Stinker.)

Appreciating Movement

Oia's little buddy Sawyer, along with his parents, came to spend the past weekend with us. His mommy and I used to teach together and in many ways have grown a lot alike (or so I've been told!). We were expecting at the same time and delivered these little angels just 3 weeks apart. It's been a blessing to have a friend like this in my life as well as for Oia to have Sawyer to play with, learn from, and grow up with...a life-long friend.

During our visits together, I find myself in absolute awe over what a flexible, stable, typically developing 2 1/2 year old can really do. I look at kids around Oia's age while out at the grocery, the mall, doctors visits, etc. and I always find myself staring and mesmerized. Mesmerized by their instinctive natures. Mesmerized by the ability to delicately pick up a bite-sized snack with just a finger and a thumb. I watch Sawyer sit so naturally on our living room floor in criss-cross style, alternating legs and rapidly changing positions, and I'm muted by the marvels of nature. I watch the controlled way he moves his lips when he speaks. The way his lips press firmly together to form a dimple fascinate me. And when he's really serious, both lips tighten and pucker together with just enough space left between them to allow a sequence of words flow almost effortlessly out of his little mouth. I notice his eyes open wide and functioning as a pair. I watch as he hoists himself up onto a bed in what appears to be one swift motion. Then jump up and down. I smile and enjoy observing. So completely in awe of his every move, and other children's moves, every single time I witness them.

It is Oia who has given me this sense of wonderment and appreciation for movement. It's been one of the greatest gifts Oia has given me as her mother thusfar. Another unexpected gift, but one of the greatest gifts for sure. She is why I marvel at the gait of any 2, 3, 5, and 10 year old child each time I stop to analyze it. The ability to move in any way, shape, or form is amazing in and of itself but having the natural, organic ability to move is something I haven't yet found the words to describe. But any movement at all; great or small, slow or fast, labored or not, is truly a blessing. I have learned to not take movement for granted; whether it be the turn of one's head, the flick of a finger, or step after slow step. Regardless of ability, how very fortunate we all are to just move.