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

Wednesday, June 30, 2010


I had been anticipating the visit of our dear friends; Sawyer (same age as Oia) and his mommy, who were arriving sometime Sunday evening. The Sunday was pretty typical in routine but Oia had not been wanting to eat or drink much. We have been spending quite some time outdoors in recent days despite the unbearably hot weather so I assumed the lack of appetite was weather related.

Sunday night rolls around. Our friends arrive safely and mommas and kiddos decide to go for a walk. Sawyer rode a tricycle and Oia rode in her red ride. I noticed Oia was getting whiny and she wanted out of her red ride to be carried. Since it was so hot, we turned around and headed back for home after about 30 minutes or so.

We returned indoors and Rob noted that Oia was hot to the touch. She wasn't sweating like the rest of us were (which was puzzling) but very, very warm. He took off her shirt and soon after carried her upstairs to get a cool bath. She was unhappy at bath time, still hot, and very tired. We were both getting a little concerned that she may have been experiencing some degree of heat exhaustion. After her bath, Rob took her temp and it was over 100. She was still, lethargic, and a little out of sorts and we both were very concerned and worried at this point. The last thing we want is any fever at all since seizures are an ever-present worry for us. Immediately, Rob gave her some children's ibuprofen to reduce the fever while I comforted her on the couch. No more than what seemed like 1 minute later, she was agitated and began to push out of her mouth an excessive amount of thick, clear, mucus-like saliva and her eyes became heavy during this time, almost shut at one point. I panicked. It lasted seconds but I panicked. Rob frantically asked what Oia got into as it seemed like she was trying to cough out something toxic that may have been ingested. We knew she had not been into anything and together we feared that this was our nightmare come true; her first seizure. Rob called the squad who took us to UVa's Pediatric Emergency Department.

Oia seemed fine on the way to the hospital. We arrived at the ED sometime around 10pm. She was very hot, still fatigued, but very interested in what all the commotion was about. We stayed in the ED for 3 hours or so waiting to be seen by a neurologist. Oia was chipper and chatty again despite a fever of 101.5. Rob and I decided that sleep was the best option for the evening so we requested to be discharged as it was nearing 1am and no neuro was in sight. ED doctor said that she was considering Oia's episode a seizure until she was 'proven otherwise'.

Oia slept well through the night but her fever remained even with continued doses of ibuprofen and generic tylenol. Rob stayed home Monday to be with us and he called our neuro first thing in the morning to get his take on what may have took place. Neuro does not believe that Oia seized since she was cognizant enough to push out the saliva with her tongue as well as reach up to pull it out with her hand. The question to be answered was why in the world does Oia even have a fever? It's the middle of summer and she has had no symptoms of cold or infection. No runny nose, cough, etc.

I made an appointment for that afternoon with Oia's pediatrician. Fever was 102. After a thorough exam, her ped noticed that Oia's throat looked 'beefy' with 3 spots that were bound to be blisters by the following day. She tested negative for strep. Which leads us to another nasty, but fairly common summertime virus in children called Hand, Foot and Mouth. The high fever and blistering throat are hallmarks signs. Thankfully, there are no blisters on her hands and feet which are also common in HFMD. Nothing to do but treat the symptoms and let the virus run it's course. We're guessing this is something she got at the pool...who knows, could have been anywhere.

Oia's fever finally went away last night. Today her appetite is back. She is still not 100% yet but much better all around. Sunday was scary, to say the least. You realize in moments like this how very quickly your world can change and with little to no warning whatsoever... And it only takes a mere second to remind you how out of control we really are. Thankfully, Oia's neuro and ped are not convinced that Oia experienced a seizure but just a sudden spike in fever. And who knows, the medicine we gave her initially may have burned on such a raw throat which may explain the frantic output of that thick saliva.

Just glad that's all behind us... glad Oia is feeling better by the day and that we didn't scare Sawyer and his mommy back to NC. We enjoyed a couple low-key days indoors and as it turns out, they were just the medicine that Oia needed.

Wednesday, June 23, 2010

The Gym

We have a gym just minutes away from our home. It's a decent gym with a nursery where kiddos can play while parents workout. And what's even better, my sister is a fitness instructor there so guess who gets to work out without forking over the price of a membership? It's really nice.

But, there's only one problem.

Oia hates the nursery.

Workouts are an hour. It's the only me time I get. On average, just twice a week. Since Rob is rarely home before 6pm, I have no choice but to take Oia to the nursery. It's not a busy gym and most times Oia is the only child, maybe occasionally one other child is in there at the same time. You'd think that would be the perfect scenario for her; an adult all to herself but noooooo...

The moment I walk into the building, her demeanor changes. She squeezes me tighter, she looks with caution and knows something is up. I know most kids her age experience separation anxiety but this to me seems extreme.

I never make a big deal that mommy is leaving or that I'm going 'bye-bye'. I feel the best approach is a stealthy one so the drop off is loving but quick. (I have tried to stick around in the nursery to play for a few minutes before leaving but that didn't work either). Instantly, she's screaming. Screaming bloody murder.

The workout studio has a two-way window into the nursery. Little ones can't see into the studio as the window is too high but I can peek over and check on Oia as I feel necessary; which is all the time. When your child is crying inconsolably and the reason is because you left, it's very hard to concentrate, much less enjoy anything you are trying to do. In addition, when you hear your child screaming through a wall and over the blaring workout music in the next room, you're heart tells you to skip the workout and save your baby. But how in the heck do you help your child overcome a severe case of separation anxiety when you swoop in right away with rescuing arms?

So what is supposed to be enjoyable for me is far from it. It's an emotionally draining hour for the both of us. My mind wonders here, there, and everywhere the entire time. I'm analyzing the situation. I'm thinking... Is this time for me really worth Oia's misery? Is my daughter interfering with others who are here to work out in peace? Should I just stop now? Dear God, what triggers a seizure? Could it be emotional stress from screaming at the top of your lungs for an hour? What in the heck is she going to do come August when I drop her off at preschool for a few hours? Oia needs a healthy mom, right? Stay here and stick this out, she'll be fine. Maybe if I give it just 5 more minutes, she'll be alright...if not, then I'll leave...just 5 more minutes...

And 'just 5 more minutes' after 5 more minutes turns into an hour later. I make it through the workout and Oia's still crying. Once she sees me again, she still can't completely calm herself down. She wraps her little arms around my neck and hugs me as tight as she did just before I left her but with a red and runny nose, bloodshot eyes and tear covered glasses; she is crushed. Absolutely crushed. I always thank the staff for their patience but they swear it's no big deal to them, even asking to bring her back and try it again.

I've taken Oia now about 5-6 times. Other times, Rob comes home slightly early which saves her from the hour of torture. Each time she goes through it, it's the same outcome and it doesn't appear to be getting better anytime soon.

Everyone says 'Oh, she'll get used to it'....but when? Preschool is roughly 8 weeks away.

Tough love sucks.

Monday, June 21, 2010

New Shades

Oia's eyes have always been extremely sensitive to sunlight. It's not uncommon to see her squint, look down, and/or rub her eyes when outdoors on a bright day. Despite all, she loves to be outside.

At Oia's post-surgery appointment in March, her eye doctor gave us a script for sunglasses to use if we pleased. Of course, the pair that we picked out for her were on back order for the month of May and part of June but they were finally ready this weekend.

I have to say, she looks pretty stinkin' cute in her new "Hollywoods". We have tried standard, non-script sunglasses before but she refused to keep them on. However, the new pair is a different story. She willingly wears them and doesn't reach to pull them off but we really didn't expect her to with this pair since they are her prescription and she wears her other glasses just fine.

We have spent a lot of time outdoors since getting these and it's obvious they make a huge difference to her. We all know how much more enjoyable being in the sun is when you're wearing your sunglasses. Thankfully, Oia discovered that pleasure this weekend too. So happy we finally got these...and thanks to a generous vision plan, they did not cost a thing!

Sunday, June 20, 2010

Father's Day

I make zero dollars a year. Not one penny.

And I'm okay with that.

Except when days like today roll around. I can't just run out and buy something special for the most deserving father/husband in the world as I would like to do.

But, I do own a small slice of cyber-space so this will have to make due...

Rob, Oia loves you and I love you. We are two very lucky girls who depend on you and appreciate you more than you realize. You work hard, give unconditionally, and ask for very little in return. Today is for you... Happy Father's Day to someone who deserves way more than Oia and I could ever give you...

Thursday, June 17, 2010

Vote for Zach

Linking up to someone else's blog isn't something I'd normally do but today I just have to. Ellen posted a wonderful post today (actually she does every day) but this one could not go unshared. Please check out Zach's videos and take a moment to bounce a vote his way. Like Ellen, I too was left smiling and crying all at the same time.

Wednesday, June 16, 2010


We just returned from a few rainy, but enjoyable, days in Ohio where we crammed in as much family time as we could. All of our family (Rob's and mine) live in Ohio and we make it there only once a year, twice if we're lucky, so it's extra special for us when Oia gets to be around those who love us the most.

We attended a cousins wedding, visited faces we do not get to see nearly enough, and Oia's favorite; played with cousins. Here are some highlight photos of our brief visits...

Oia enjoyed her time with Great Uncle Joe and Aunt Gayle from Too Far Away, California...

She got some patch time on the hammock with Grandma...

Spent quality time Great Grandma; the biggest fan of this blog...

Snuggled with Grandpa...

Splashed in the way-too-cold pool with her cousins and Aunt Tara...

Got a bubble-blowing lesson from Cousin Callie...

And a ride in some fancy-smancy stroller from Cousins Callie and Colton...

Strolled with Mamaw...

And learned to sign 'Love You'...

Tuesday, June 8, 2010

New Speech Therapist

To date, we have had 4 sessions with our new ST. The new assignment feels better than the previous one so we have made a step in the right direction.

In a nutshell, our new ST seems to take a more scientific approach when it comes to figuring out Oia and her language struggles. That, I appreciate. She has spent two sessions performing intelligibility tests and really listening to hear what Oia's errors are; articulation and/or phonological. It seems to be at this point the obvious obstacle to overcome is a significant phonological disorder, though this is not her only issue. This came as no surprise.

A phonological disorder differs from an articulation disorder simply because it is a rule based error process. They sound exactly like an articulation disorder when someone speaks but an incorrect 'pattern' is heard by a trained ear. Oia 'talks' all day long but we have little clue what she is telling us.

The good news is that it is not uncommon for toddlers to have such a disorder but by natural progression, most overcome this. The bad news is that this won't be the case for Oia; some natural progression, lots of intervention.

ST says the way to begin correcting a phonological disorder is to teach Oia to imitate our sounds, mouth movements, etc. This means Oia has to first be interested enough to stop whatever it is she is doing, look at us, focus on our mouths, listen to our sounds, and in turn try to imitate. I can tell you, this is not likely going to happen anytime soon. We try but we are dealing with a girl who walks just to walk, never slows down, and who has a mind of her own. On top of that, her attention span is almost nonexistent. Plus, there are things that Oia has never done with her mouth before, like stick out her tongue, smack her lips, or even lick her lips. Kids with CP literally have to be taught EVERYTHING. Nothing comes instinctual.

So, speech is still a frustrating topic of conversation for me. I still dread our weekly hour sessions that still look like playdates but at this age I realize that 'playing' is the only approach. I have surrendered to the fact that ST is a gray area of therapy that has no cut and dry answers or immediate resolutions, at least for the very young. In Oia's case, we are at the mercy of multiple issues beyond our control.

Rob and I discussed this over dinner last night. We know that adults who have a stroke can regain the ability to speak partly because they once knew how to and so retrieving language is possible again. With Oia, one who has never known how to talk in addition trying to overcome the effects of Schizencephaly, learning the rules and patterns of language is a tall order and extremely difficult. We've been warned by her neurologist it would be.

My gut tells me that in Oia's own sweet time, she'll communicate somehow. Will speech therapy help? Perhaps. Will it speed the process along? Maybe. Will she speak well enough so that people other than Rob and myself can understand her? Who knows. I have hope she will.

For now though, it's a waiting game that leaves me feeling frustrated, helpless, heartbroken, and tired. I so badly want to hear those thoughts inside her little head. I want to answer curious questions; over and over and over again. I want to hear funny 2 year old stories from my 2 year old. I want to hang up my role as mind-reader. I want these things for me, but even more so, I want them for Oia.

Some days, I think I'm okay with Oia's speech delay. Then other days I feel if I could only understand her, I'd know her that much more.

Thursday, June 3, 2010

Same Beach, Different Year

We live in a lake community and for the most part, we enjoy the perks of having a lake nearby; the beaches, the sand, fishing, and the freedom to escape and relax in the sun for a while. However, in past summers, the beach has been a very difficult place for Oia. She wanted very badly to be on her feet and walking. Walking without AFO's, in bare feet, in lumpy sand, on a sloped shoreline made for quite a challenge, even while holding our hands. Throw in a little wind and knee deep water and mobility was nearly impossible then. She just didn't have the balance or strength to remain upright. An outing to the beach was physically demanding for the adult in charge as one would have to hunch over, hold Oia upright, under her arms, so that she could step and play in the water as she wanted.

That got really old, really quick. Let's be honest (as selfish as it may sound), mommy and daddy want to enjoy the beach too. Hence, last year's new boat.

This year, however, things are definitely different. She tolerates the sand just a teeny bit more and is willing to play in it some. She is able to walk without her AFO now, in bare feet, even on sand. She can walk straight into the lake for a couple of steps before the water gets too high and then waves and buoyancy wins over balance. Walking straight out is doable too. Walking along the slope of the beach is still something that requires a great deal of our assistance. Nonetheless, huge improvements. Huge.

We spent some time last weekend at our main beach. Due to the crowd, I was only able to video a small clip of Oia walking to the water; no videos of her walking in or out of the water. Distance to the lake was roughly 50 ft or so. She was bare foot which means she walked high on her toes. She lost her footing at the waters edge but Rob saved her from a fall since she reached for his hand just seconds before.

So, how do we measure progress in our house? It's definitely by moments like this...remembering what it was like last year and celebrating what it's like this year.

Pictures of Oia and video taken on Memorial Day.

Wednesday, June 2, 2010

The Red Ride

When Oia was just a sitter, long before she could roll over or crawl, we bought Oia her first car. She loved it immediately. The car allowed Oia to sit while contained which kept her safe from falling over yet she had something in front of her to keep her hands and mind occupied. The car provided my back a break and freed up my arms so I could prepare dinner, do dishes, etc. In addition, Oia has always been a girl on the go, go, go so pushing her lap after lap around our house kept her satisfied. This car has definitely been one of those must-haves in our book.

Then, thankfully, Oia grew stronger and finally learned to walk. This led to her wanting to climb. She wanted to climb in and out of the car as opposed to stay seated and enjoy the ride. Her AFO's were cumbersome and her feet and knees would constantly get stuck in the car or wedged under the steering wheel which then just became more of a hassle than it was worth. So, we bid farewell to the beloved car and parked her in the basement. That was last winter.

But now, the car is back and has a new role. It's the perfect distraction during patch time! It has now become a toy for the outdoors as we push her for long walks along our quiet roads to keep her mind off of the patch. With two hands on the wheel, she seems to forget about wearing the patch for a while. She has rediscovered the thrills of a joyride and it is quite difficult to convince her it is time to get out. But once she's out, the next best thing is to take baby for a ride.

And just for fun...do you think she's a girl on the go, or what?

Tuesday, June 1, 2010

Oia's Angel

"An Angel for an Angel" is what the kind woman said as she handed a small garden angel to me; intended for Oia. Although, it seemed apparent to me that the woman was ashamed to give us something that was considered less than perfect by her standards as she dusted off the dirty wings.

The woman is the owner of our favorite floral nursery we frequent. Her husband told her she might as well just throw the angel away as no one would buy something that was broken. Since she couldn't stand to throw an angel in the trash, she held onto to it until she found someone she could just give it to. Along came Oia.

She showed us the angel was missing a foot. No big deal. To me, it was still an angel. I was thankful for the offering and even more thankful that she thought to give it to Oia. I reminded the woman that Oia has a 'less than perfect' foot too and that the pair were meant to be. We smiled at the irony of it all.

We thanked her and left for home. On the ride home I couldn't help but think how consuming perfection can be for most people. It is something that many people strive for but most fall short of simply because they wouldn't know perfection if it stared them in the face. Perfect doesn't always look perfect. It seems the world at large tends to assume perfection, seeks ways to find it, and feels shorted or sorry when perfection isn't the outcome. Accepting and living with the imperfections that have been bestowed upon one is true beauty and the epitome of perfection.

Perfect is being the way you were made to be, even when it seems imperfect to others.