Unexpected Lessons

CVI and Visual Clutter

2012-02-10T09:38:00.000-08:00

I recently met with the new vision specialist that services Oia's school. She is different than the specialist who assessed Oia last year and thankfully so. This recent meeting has shed some light on things that were going unnoticed by both myself and Oia's teachers. Namely, visual clutter and the behaviors that stem from it.

If you Google the term "visual clutter", you'll get all sorts of articles pertaining to messy desks and unorganized spaces. Refine your search to something pertaining to clutter and visual impairments and you get more than enough on CVI, Cortical Visual Impairment. Those with CVI can have normal eye capacity (healthy eyes) but once the image reaches the brain, it is often difficult to interpret or process correctly, usually due to an interruption of information as the result of a severe injury to the brain or a brain malformation. Focus and concentration are not amoung the easiest of things to do when the brain doesn't play nicely with the eyes. Is this why my child never stops to sit for long, or at all most days, not even to eat? Anyways, I digress...

Oddly, until now, CVI has never been mentioned to Rob or I by neither a neurologist or an ophthalmologist... and remember, Oia has a significant congenital brain malformation. Because the term has never been bounced in our direction, we assumed Oia wasn't effected by it and therefor we've spent no time researching it or living life as though she has it. But after doing the smallest amount of research on CVI since our meeting, it seems like CVI is almost a given when brain injury or malformations are present. The vision specialist noted that many of the behaviors she observed while working with Oia were classic behaviors for kiddos with CVI. For example, Oia gets "lost" before some activities even begin if the activity involves multiple objects/materials. Objects must be sequenced, and introduced one at a time in an uncluttered environment to increase Oia's ability to focus. If her sweet brain is trying to channel and process too much at once, she's over the task before it even gets started.

Another example, the specialist noted that Oia looked at an object on the table in front of her, glanced away from the object, then while looking away, reached and picked up the object with accuracy. For reasons that are unexplained, seeing objects is sometimes easier for CVI folks when not looking directly at them. Think about trying to walk around your house in the dark... ever turn your head slightly and look away from the direction you are trying to head to find that you can see your destination a little better? Perhaps this is the same concept for Oia in the daytime. And is this why she so reluctantly looks at our faces, or makes eye contact when speaking or being spoken to, especially during speech therapy? She will and can look at someone when asked to but quickly chooses to look away... hmmmmm.

I realize a vision specialist is by no means a doctor but her input is definately something to think about. We will just continue with the visual accommodations we have been using and be more mindful of and implement the visual strategies I've found in my searches that are helpful for kids with CVI. I'll be adamant that Oia's teachers are mindful as well. CVI or not, Oia is amoung the visually impaired population and these strategies can't hurt her. The vision specialist will schedule with Oia's teacher once per grading period for 30 minutes to offer suggestions that will hopefully enhance Oia's learning environment by avoiding the visual clutter. One of the comments on Oia's most recent IEP report stated that "Oia is interested in learning new concepts however her vision is a major obstacle to her learning at this time." Reading that sucked and it was the first time vision difficulties have ever been noted on her report. But it is what it is. Visual accommodations are a must for our preschooler now more than ever. Bolder prints, larger fonts, contrasting objects, simple generalizations, minimal "clutter", realistic pictures, and whatever else we need, we'll do... all for a girl who deserves to see and learn the world like anyone else.

Happiness is...

2012-01-28T11:10:00.000-08:00

... a lot of things. It's finally having a moment to sit down and reacquaint myself with this blog. It's having a husband that works his hiney off so that I am able to stay home and man the family ship and not miss out on a single moment. Some days though, I'd like to opt for a co-captain er, a nanny. Particularly so at any hour of the night when my high-maintenance, yet oh-so beautiful 6 month old wakes for the 4th, 5th or 6th time. Every night. She never misses a beat. That, my friends, is not happiness. Although she'd beg to differ...

Happiness is scribble that's slowly turning into an "O-i-a". It's not pretty (yet) but who says signatures have to be? For Oia to stabilize her paper with her less dominant hand and correctly grasp a writing utensil with the other, go "around and stop" to form an /O/, then go "up and down" to make an /i/ is purely an accomplishment. The /a/ is most challenging but she'll learn to perfect it soon. With only verbal cues, our girl has put her name to paper and that's just plain awesome.

Happiness is the ever-growing list of new sounds, words, and phrases that come from the mouth of my 4 year old. With each new word or phrase, I feel as though I'm learning more about who my daughter is. Thoughts are turning into words. Words introduce me to my child. And never, ever do I underestimate the power of a single word.

"I need wheeeeee!" So off we go... to the swing to go wheeeeeee! And "I need go pee-pee!" so off we go to sit for a different purpose entirely!

While pointing up and into the dark sky from the living room window, "Mommy, Mmmmmmm". A child whose visual impairment doesn't stand in the way of her view of the moon, she shows us the big light she discovered high in the sky.

When Esme finishes eating, Oia questions "All done ba-ba?" in hopes I'll answer "yes" so she can take the empty bottle and in turn feed her baby. She's a little mommy, no doubt.

In asking for her glasses, "I need eye", as she closes her eyes and points to one of them. It's a remarkable request coming from someone who only ripped them off countless times a day as an infant.

Happiness is a week of warm, 60+ degree weather in the middle of January. Stroller-riding, walking, and wheeeeee-ing in the warm, winter sun is good for the soul.

And happiness is found in the space between Oia and Esme. The space between them is my dream come true. Really. I wanted so badly to have a second daughter long before I became pregnant with Esme. I imagined an older Oia. An Oia who would need a best friend, no matter what. An Oia who had come home from a really awful day at school, maybe feeling lonely. Maybe feeling down about being different. Maybe feeling the need to vent about what hurts, physically or emotionally. Maybe feeling the need to simply share a joke, or a secret ~ with someone other than mom. Maybe feeling overjoyed of a recent achievement, bubbling inside to share it with someone who truly cares. A sister. I knew she needed one. Esme needs Oia too. I really believe these two ladies were made to compliment one another. Many heart to hearts, good cries, laughs, and memories await them. In fact, the laughs have already begun... and that's true happiness.

Fixed

2012-01-11T07:47:00.000-08:00

A little over a month or so ago, after Oia's nightly brushing, Rob noticed Oia had a cavity on one of her left bottom molars. The cavity seemed to happen over night but it was quite noticeable and even discolored. We suspected that this cavity could have been the cause of those inconsolable crying spells that occurred a few weeks earlier*. So the following day, I took Oia to her dentist to take a look and she wouldn't allow the dentist to get a good peek. Obviously, the consensus was that the tooth needed fixed, and since this girl does not tolerate dental appointments well, I had to schedule her for admission into UVA for dental work under general anesthesia. That lovely procedure took place yesterday morning.

While under anesthesia, the goal was to x-ray her teeth, clean them, apply sealant, and fix any and all cavities. We went in there knowing that she had one cavity and a congenital defect of another tooth that needed to be checked out. Half way through the procedure however, the dental team called to say that they found more cavities and it would take them longer than expected. So 3 hours, 3 caps, and 6 cavities later, we were finally called back to recovery. One would think after hearing that news that a toothbrush never entered her mouth on a daily basis but I assure you one does... and often times more than once a day. AND, she's been going to the dentist regularly for about a year and half now with no concerns.

But I must say, the risk factors have been stacked against us. Oia has low tone in her mouth, hence the drool. Therefor, she doesn't clear her mouth of food and drink as one should be able to. She often times is unaware when sticky foods are stuck to her teeth. Dentist said that the enamel of Oia's teeth is soft so having both of these factors on board just leaves the door wide open for dental decay. Joy. We found out the hard way.

But even after knowing all of that, I still feel sick about it. Like I'm a horrible mommy kind of sick. Her teeth are our responsibility... and look what happened. Shiny metal caps are NOT supposed to be a part of my child's smile. Can I look on the bright side and say that at least these teeth are her primary set and she'll one day get all new teeth? That thank goodness teeth can be "fixed" and that the caps are in the back of her mouth? It doesn't really make me feel any better but that's what I'll keep telling myself.

So, I guess we eliminate some juices and replace them with waters and just be more mindful of the foods she eats. I refuse to eliminate certain foods from her diet though simply because of sugar content. I'm not that mom. She is four and has a love and curiousity of all food types and I love that about her. I'll just moderate but not eliminate... poor girl. She handled the whole day in true Oia fashion ~ like the trooper she is.

*And a little fyi... none of the cavities effected the roots of her teeth therefor none of them should have caused any pain or ache. Crying spells still a mystery but none have returned.

Reflection and New Year

2012-01-03T18:20:00.000-08:00

Happy New Year. Remember me? I'm here, barely. It's been since July that I've slept through the night and I feel and look as though I've aged nearly 10 years since I found out I was pregnant just 14 months ago. I keep telling my husband that a little sand, some sun, and a warm ocean breeze would work wonders on my spirits, not to mention my looks, but he's not buying into it. I'll chalk it up to unconditional love.

Anyways, life has plopped us into 2012. And I'm so glad. 2011 looks really nice in the rear-view mirror. It felt like a rough 365 days. High risk pregnancy, questionable health of our unborn baby, the sudden and tragic passing of my dear Doberman, Oia's surgery and a consuming summer therapy schedule were all bumps in the road. But, silver linings do exist and they were always present when I remembered to just stop and look for them. Life is good like that.

The toughest decision we made in 2011 was to have Oia undergo lengthening surgery while I was nearly 8 months pregnant. To date, it's been the best decision we've ever made for her. And trust me, we've made a lot. Cutting her hamstring and Achilles tendon did more than just release the tone in her leg... it provided our girl the freedom to be, to bloom with some ease. CP still does and always will have a mark on our girl but moving around post-surgery without having to fight muscles does wonders for a developing 4 year old. Oia's tolerance for the surgery, the recovery, and for the summer of subsequent therapy simply amazed me.

The absolute highlight of 2011 happened on the morning of July 20th as we became parents all over again. My pregnancy was riddled with fear, anxiety, and tears of all kinds. But in the end, our sweet baby Esme is proof that prayers can be answered. Born with a heart as unique as she... the most beautiful, alert, brown-eyed baby we've ever seen. To think she's all mine, all ours ~ it just baffles me.

There have been ups and downs over the last 12 months but no life would be complete without either. I am here, able to reflect, able to look back. Looking back is only possible if you've been fortunate enough to make it through. And that I have. With all the strength and wisdom another passed year provides, I move on a better person and into 2012 as the blessed mommy of two extraordinary girls and as the lucky wife to a man I don't deserve. 2012 will bring great things to this party of 4. I will make sure of it.

Photos by Kari Davis Photography, October 2011

Christmas Love

2011-12-25T16:20:00.000-08:00

Just reason #977 why I love these girls... an impromtu Christmas kiss from big sis to the littlest on Christmas morning. No greater gift than pure love, today or any day...

Not This Year

2011-12-10T17:39:00.000-08:00

Oia loves to read about him. She loves to see him on TV. She doesn't even mind his presence from across the room. She'll even wave to him from afar. But there she draws the line. Today's encounter left her a little too close for comfort... and it broke her heart. Maybe next year, Santa...

An Update on Little Sis

2011-12-08T19:08:00.000-08:00

I realize that this blog is intended to be centered around the life and times of the one and only Oia Teaster. However our Esme, who is equally as important, will certainly make an appearance on this tiny slice of cyberspace every now and then. Today shall be one of those times...

Many of you know the emotional roller coaster we unwillingly found ourselves on a short time ago... a ride that began when I was just 22 weeks pregnant with Esme. The news was not okay. It seemed, and was, a very complicated mess. The following 4 months of the pregnancy were filled with worry, questions, monthly fetal echos, high risk appointments and prayer. Lots and lots of prayer. And there is no doubt in my mind that is exactly why today we left the pediatric cardiology clinic with the very best of news for our now 4 month old.

Esme was seen by her cardiologist this morning. We arrived with the assumption that she would have another echo at this appointment, an echo to just make sure her heart was doing what it was supposed to be doing (no extra flaps, irregular blood flow, etc). But, that wasn't the case. Doctor reviewed her scans from just after her birth in July, saw her physical growth and development to date, checked vitals, and then asked "Why are you here again? She's just fine".

Her heart is FINE! It's position and location in her chest is not normal but its function and structure is. There is no reason for why it is the way it is and we're okay with that. She's chunky. She's happy. She's pink. And she's thriving. Her heart is fine!

From here on out, we follow doctor's orders which are as follows:
Treat her normally, forget about "it", and only call me when or if you have concerns.

Wow... emotionally, we've experienced it all. I'm not up for jinxing anything but it's turned out to be the perfect ending to what began as one heck of a scary story. But at the end of the day ~ this face with the most beautiful brown eyes you've ever seen ~ is more than worth it. And we'd do it all over again if we had to.

Happiness is...

2011-12-05T17:24:00.000-08:00

being allowed to finish off the last few swigs of mommy's ice cold Coca-Cola.

The Wrong Way

2011-11-27T10:53:00.000-08:00

In my previous life I taught first grade. I was insistent that my students only go down the slides on the playground. It was a simple rule made and enforced to keep my little darlings safe. You could guarantee I'd shoot the infamous teacher "stink eye" to any daring child who challenged my rule. And believe me, many did.

But, funny how time and circumstances change us. For a kiddo like Oia, climbing up a slide is a therapeutic challenge, practiced in PT sessions, and now suddenly acceptable in my mind. Even encouraged. My heart feels great delight to witness Oia tackling a slide the wrong way. She prefers the challenge of climbing up instead of sliding down which never ceases to amaze me. I never thought this would be a rule I'd gladly let my child break nor did I ever imagine that sometimes I actually have to remind myself that yes, this is a child with cerebral palsy... just look at her go.

An Update

2011-11-18T06:56:00.000-08:00

A follow-up to the mystery mentioned in my last post...

We decided that the rule-out process was easiest to start at the idea that Oia was experiencing migraines and perhaps auras. So, to treat for migraines, Oia has been taking a quarter of an Amitriptyline pill each night. These pills act as a preventative to headaches. They are only about a frog's hair bigger than a birth control pill so quartering them with a pair of scissors isn't the easiest thing to do. Half the pill turns to dust and maybe the rest is usable, if you're lucky. We're going with it though... just following doctor's orders.

To date, Oia has not had any more inconsolable crying spells with any "off", discomfort-like behavior. However, she has gestured to the left side of her head and said "ou" as in "ouch" at least once every day since then. I have called the nurse at the neurologists office to discuss this with her. She said it still sounds like Oia is having headaches and suggested we up the Amitriptyline dose to half a pill and see if this dose eliminates the "ou" complaints. Last night was the first night of the new dosage and the first thing Oia said to me this morning was "ou" while holding her hand over the left side of her face. Is it eye related? Brain related? Hell I don't know, could it be a toothache? I'm grabbing at anything. It's still a mystery.

We have a follow-up with neurology scheduled in three weeks. We'll see where this road leads us at that time. There has been talk of scheduling an MRI and/or an EEG so we're playing limbo until this appointment. The last MRI Oia had was at the age of 7 months and the last EEG was in early '09 (I think). It may be time to get an updated baseline now that the Princess is 4.

In the meantime, my eyes are wide open. I'm constantly scanning her every move for a clue as I'm convinced this must be something. Maybe I'm making a mountain out of an anthill but it's always easier to be safe than sorry. She's our girl after all. But seeking the silver lining... Oia is still happy, busy, full of rotten, and the crying episodes have not returned. That has to be a good thing.

I Hate Gray

2011-11-07T17:42:00.000-08:00

This is a bit overdue so let me rewind a little... to a week ago last Thursday.

I got a call from Oia's teacher around 11am. She tells me that Oia has been crying for some time now, is inconsolable, and demanding to be held. NEVER has my child been inconsolable. But sure enough, she was just that. My presence and early arrival to school didn't comfort her in the least. It panicked me. Her behavior seemed to be "off" as she was just not herself. Funny breathing, agitated, fatigued, and a cry I had never heard before. I knew I had to head to one of two places and fast. Either the ER or to her pediatrician.

I called Rob who happens to work at the hospital. I was going to pick him up so he could help me (I had both girls). We were at least 30 minutes away from where he worked. And in times like this, it's a blessing that my husband has a medical background. He gave Oia a quick assessment as soon as we picked him up. By this time, Oia has calmed down, and Rob determined it was safe enough that we could head to the peds office. Upon arrival at the peds office, Oia resumes the same crying behavior. They took us back right away. Oia screamed the whole time. Again, she was "off". She had no fever, tested negative for strep, and had no obvious reason for the discomfort. Gray is not my color. I'm a black and white girl who loves answers. We left with none. Just a dose of Tylenol. I wasn't satisfied.

Oia had another crying episode later that night, making a total of 3 for the day. She did get a slight fever later that evening but nothing too significant. I kept her home from school the following day so I could keep a close eye on her. She had me worried to death. The crying spells didn't return and it all seemed to be too strange. Fast forward exactly one week later...

Oia woke in the night with another crying episode. This time the crying lasted a solid hour. It was wrenching to experience. Rob and I both knew that whatever Oia was experiencing needed to be addressed with her neurologist. That's where we headed first thing the following morning. That was Friday.

Given our most accurate explanations of Oia's behavior during one of these episodes, it is believed by Oia's neurologist that she is experiencing some sort of neurological disturbance. The question is what? We know that Oia's EEG is abnormal. After all, we are talking about a girl with a hole in her brain. We know that she presents high risk for seizures. Was Oia experiencing a migraine, an aura, or a temporal lobe seizure of some sort? No one knows. And when no one knows, it's a toss up as what to do next and the "rule-out" process begins.

Migraines are the easiest place to start. Oia was prescribed a preventative medication to be taken once a night before bed. If there is no return of the crying behavior, then we can guess the medication is preventing a migraine and we can chalk that up as the answer. If another crying episode does return, we can assume that Oia is not experiencing a migraine, but instead something worse. In that case, we go back to the drawing board. If these episodes return and return with some frequency, then Oia will be admitted for monitoring in the hopes of catching one through an EEG to determine what it is and why it is happening.

It's a guess. I don't play these games well. Whatever it is, I wish Oia didn't have to endure it. She deals with enough. Maybe my 4 year old is experiencing an onset of migraines but my gut tells me it's more than that. I'm fearful of the 's' word and always have been. It scares the hell out of me. I'm living on eggshells and waiting. But for what? Nothing, I hope.

Your prayers are welcome here.

Halloween at UVa

2011-10-31T17:43:00.000-07:00

Tonight, the girls and I met up with Rob on campus and then together we escorted our lil' 50's girl to the Halloween festivities on the Lawn at UVa. It's something we've done every Halloween with Oia since moving to Virginia 3 years ago.

Esme was less than thrilled to be there but Oia on the other hand was in Heaven to be getting so much chocolate. This year Oia seemed to understand the concept of Trick-or-Treat and the craziness that was taking place around us which made it a more enjoyable Halloween. She was eager to wear her poodle skirt, she said her best "trick or treat" when she was supposed to, and she even said "thank you" several times. She mingled and observed the organized chaos around us and said "me" on the way home, which is her pronunciation of "more". She LOVED it.

It took some convincing for Oia to walk away from the stroller and mingle a bit. She was very concerned about leaving Esme.

But once she did, she stumbled into her twin.

And Hulk Hogan...

Poor Esme missed most of her first Lawn experience, but at least she was warm.

Happy Halloween, everyone!

Oia Ramblings

2011-10-29T18:19:00.000-07:00

Our biggest Miss is changing right before our very eyes. She still has a way of making us shake our heads, grin and chuckle, and then shake our heads some more. A handful. Pure and simple. And we wouldn't want it any other way. But keeping up with Oia while marveling at the growth and development of our little Esme has left me little time to sit here and ramble about all the fun and wonderful things that are happening in the Teaster house.

But I must make time... allow me to ramble.

Progress is happening in the potty department. Oia is finally starting to show a consistent interest in using the toilet. And with that, it seems like she is gaining better control of "letting go". It's still very much an effort and requires great concentration but it's happening. And just this week, she requested to use the potty by saying "pee-pee" as I was getting her undressed for bath time. A first. Slowly, we're moving in the right direction.

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The Teaster house is finally binki-free. And I kind of feel bad about taking away something that is so near and dear to Oia's heart but it's time, maybe even past time. The girl has been a binki lover since the day she was born. And really, so have we. Binki's soothed our girl to sleeping through the night at a very young age and offered comfort in the most stressful of times, from those early and tough EI therapy sessions, to hard tumbles and scary doctor appointments, to post surgery aches and pains. But I knew the process had to be a gradual wean. So since age 3, Oia has only been allowed to have her binki while sleeping or while riding in the car. But when we traveled to Ohio earlier this month, I told Oia the first night that there were no binki's in Ohio and actually, she handled it rather well. She was a little confused but went with it. Once we returned home, I rid her bed of binki's and it's been no problem. She's over it. But thank goodness for the other item of comfort, her Tinkerbell blankie.

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One of the recent notes from Oia's teacher read "Oia loves to talk about her family." My heart smiled. I know Oia especially loves having Esme around. She introduces Esme to anyone and everyone, even if they've already met her. For example, each morning we waltz into her classroom with Esme in tow. Usually, the first word out of her mouth for all to hear is a loud and repetitive "Ah-may", her best attempt at pronouncing Esme, and she leads anyone she can by the hand to show them "Ah-may". This announcement and introduction of the littlest happens everywhere we go. Today she introduced Esme to the girl at our grocers checkout counter and Esme wasn't even with us. Proud she is of her sis and Esme is a lucky girl.

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Seems like every assessment we encounter, we are always asked whether or not Oia can dress herself. The answer is no. At least not independently. But these days, Oia is trying and often insisting on dressing herself (or at least having control over the clothes). Some attempts have been successful. It's okay that the shirt may not even be hers and way too big, or on backwards, and plucked from the dirty clothes pile. Hey, a shirt on is a shirt on. She's still quite proud of herself, regardless. And so am I. As would any OT be.

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I'm sure Rob and I will always be persistent that Oia uses her right hand, or at least try to. We are generous with verbal cues but mindful to not bark too much. It seems that the new flexibility she is experiencing in her right leg post-surgery is allowing her some ease to relax other parts of her body as well, namely her right arm and hand. It's only been since then that we have witnessed her using Righty as the stabilizer, or helper hand, for some of the most basic daily activities; such as holding paper to write or cut, and stabilizing bowls to eat, etc. The feeling I get when witnessing this equates to the skies parting and the angels singing. Really. It's exciting stuff.

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Expressive language. (sigh) The subject weakens me. It is coming along but at a snail's pace and it's not for the lack of trying. Oia works so hard. We work so hard for her. We have great ST's. But there is only so much we can do. The rest takes time. But with that said, Oia has many new CVC words under her belt. Mostly but not all, CVC words that end with a /t/. Do you understand how awesome it is to put your child in the bath tub and then hear her say "hot"? Or "eat" when she's hungry? It's amazing what just two words can do to help eliminate so much of the guessing game I play every single day.

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And finally, Oia had her 4 year old check up recently. She is in the ball park of 33lbs, with her shoes and brace on. A skinny little thing. She's 3ft, 4in tall. But these are all just numbers... I'm just happy that she's happy (and growing!)

Ohio Visit in Pictures

2011-10-19T07:30:00.000-07:00

Here is a long overdue picture recap of our Ohio visit earlier this month. Visits with GG, NeNe, PawPaw, Aunt B, Uncle Brent, Mamaw, and other loved family members don't come often enough for our little lover. Oia adores the company and the swarm of those who love her most. And she proudly got to introduce her little sister to those meeting Esme for the first time.

One of those people would be GG, Oia and Esme's great-grandmother:

And the funny guy, their Great Uncle Paul:

Mamaw enjoyed warm snuggles with Esme:

The girls had an evening to play with cousins, Dani and Ellee:

And pretty much what Oia wanted to do, she did. Like drive around the yard with Uncle Brent:

Literally...

And even on the lawn mower with NeNe:

Aunt B's lil' project partner:

We visited with other Aunts and more cousins as well but it's hard to remember the camera for every detail these days. I didn't realize until after our return that somehow my Dad escaped the camera. I'll be sure to remedy that when we meet again for the holidays. But overall, a good time was had by all.

Having some place to go is Home.
Having someone to love is Family.
Having both is a Blessing.

No Hands

2011-10-13T07:03:00.000-07:00

Stepping up and down steps, with body/hips square and without hand holds is something Oia practices every PT session. In fact, this has been such a focus for so long now that I really can't remember when we started doing it. In PT, Oia must step up or down a wooden square box, roughly 7 inches high, which amounts to the average step in a home, small curb, etc. The small surface of a box makes for a less forgiving step since the footing must be precise, narrowing the base of support. In other words, no wide stepping, no stepping up sideways, etc.

In recent sessions, Oia has been stepping up and down the therapy boxes very well and multiple boxes/step up and downs in a row... a little obstacle course of sorts. It's exciting to see.

We recently spent 5 days in Ohio, staying at my parents house. There is a step in their home which equates to the same height of step used in therapy. It's even more exciting to see the hard work from session carry over into "real life". The video below captures successful, hands-free step ups but she wasn't so tolerate of me trying to get a step down video (but she could do it!!)

This was the first stay at my parents house where I didn't have to follow her every move in fear of her falling. She roamed freely around the house, coming up and down as she pleased. It's obvious progress and it makes me so thankful for our girl who works hard and for the PT that pushes her to do so.

The Littlest ~ 3 months old

2011-10-12T18:42:00.000-07:00

The New 'Do

2011-09-29T08:43:00.000-07:00

I held her (somewhat) still in the chair and Daddy stood by to watch. Her long, blond hair tumbled to the floor while her Daddy lost all color in his face. Something about this Daddy and his girl's hair, after all, he was the first one to break out a hair bow long before she really had any hair. But, each ponytail became prefaced by painful morning tangles and one really whiny girl who would just take off outta' the room at the first glance of her comb. Long hair just isn't worth the struggle. The time had come. And Rob loves it.

Trying Something New

2011-09-26T12:42:00.000-07:00

Not sure where the line is drawn exactly, but in my world a 4 year old is not considered a toddler anymore. And the departure from toddlerhood brings up an issue for Rob and I, which is Oia's drooling. We are not bothered by the fact that Oia drools. To love her is to love ALL of her and what she does and we do so whole-heartedly. But, not everyone does. Kids her age are well aware of the girl with the wet chin, occasional drool, and damp shirt. Kids have commented, many stare, and a few have actually backed away from her as if she was contagious. Those are the times I cuss CP.

On an average day, I must change Oia out of a soaked shirt at least once, many days twice. I've learned long ago to dress her in light colored shirts, mainly white ones, as this color doesn't show much wetness. Her long blond hair is ALWAYS pulled back into a ponytail or otherwise it becomes wet and sticky with food, stuck to her neck and chin, and an absolute mess. So needless to say, we've come to the place where we are ready to try Robinul, a Glycopyrrolate, which our developmental pediatrician suggested we could try long ago. The drug is used to treat many things but our goal ~ a dryer mouth with NO side effects.

To be certain to find the right dose without going overboard thus avoiding any potential side effects, we began at the lowest possible dose of .1 mL. That basically equates to about 1 drop. Over the course of the last two weeks we have worked our way up to 1.5 mL. This seems to be where we are noticing less drool, if any. We are going to continue the dose of 1.5 mL on days where Oia will be among others her age, such as on school days, at birthday parties, on play dates, etc. Other times, we'll leave her be. That's the beauty of the medication ~ it metabolizes quickly so there is no wean period and we can stop or start the med at any time.

Overall, I'm not crazy about medicating my child for something that may seem so vain to others. But at the end of the day, we want Oia to be socially accepted. If the remedy to this particular difference in Oia noted by others is as safe as a minimal dose of medication, then we're on board with it. And so far, so good. She wore the same shirt all day long today, from morning to bath time. And it was even bright pink. This is a first for us. So at this point, we'll continue the use of the med as long as it continues to treat her well.

Photo taken on a day of no medication. Not too wet yet.

Two of a Kind

2011-09-21T12:34:00.000-07:00

On Sunday, I took Oia and Esme to a little girl's 4th birthday party. And, let me tell you. If you want to be the life of the party, even if only for a moment, walk in carrying a peacefully sleeping newborn and you'll be just that. Right away, two ladies began gushing over Esme as they recalled what life was like for them when they had infant children. I talked with the ladies for a brief moment, Oia charmed them with her sweetness, and we moved on to find the birthday girl.

After some playing, it was time to gather for song and cake. As it would be, Esme felt the need to eat too. No sooner than I had pulled the cap off of the bottle I brought for her, one of the ladies swooped in and asked if she could take Esme and feed her. Once I handed the littlest Miss over to eager arms, Oia and I settled in for the singing of Happy Birthday. After a few minutes had passed, I returned to check on Esme who was now full, content and tucked snug against this friendly stranger. While holding Esme, she was gazing at her sweet face and saying what an angel she was, that she was a "miracle".

Of course, all children are just that ~ a miracle. But, I'd be lying if I said I didn't think mine were just a little extra special. But the comment left me compelled to share with this lady what a miracle Esme really is. It's the first time I've ever mentioned her condition to a stranger and probably the last but like I said, I felt so compelled to do so.

"Well, you know, she is a little miracle. Her heart is special, located on the right side of her chest."

A woman standing next to us, heard my words, and chimed in to say, "Mine is too!"

Excuse me? With eyes the size of Texas, I replied with utter shock in my voice, "Really?! You have Dextrocardia too??"

This lady was unfazed by my surprise. "Yeah, and is her heart rotated a little bit?"

"Uh, yeah." (Still reaching for my jaw here)

"Yeah, mine too!"

Hol. Lee. Cow. Now I see palsied bodies out and about from time to time. I can spot them from miles away, even the most mild of cases. A physical disability is more of an obvious difference, most of the time, than a heart condition is. Maybe that's why I was so surprised and delighted to have my path cross hers and to actually be meeting someone of the same mold as Esme. Just months ago, I felt like I was the only one in the world who had a baby with Dextrocardia. Had she not been standing near to hear our conversation, I would have never known this about her.

Suddenly, I went into question mode. I wanted to know everything about her. I learned her parents didn't find out about her uniqueness until she was about three years of age. Physically speaking, it has never caused her any problems to date. She has tricked doctors a time or two when getting various check-ups or x-rays. You can only imagine the look on a doctor's face when they can't find a heartbeat where it's supposed to be, yet the patient is alive and breathing right in front of them. Sounds as though her heart has been more of a conversation piece for her than a problem.

I spent the rest of the party observing this woman from a distance as if to get a glimpse of Esme's future. I eyed her every move. I found myself looking for any outward sign of a woman in poor health. Or a woman with a unique heart. I saw nothing. She seemed healthy in every way ~ skin of healthy color, glowing, smiling, moving about with ease, in seemingly good shape. More importantly, she's a woman whose heart has carried her far enough into this life to experience life through the eyes of her grandchildren. That is what makes me breathe a sigh of relief and in turn thankful for our paths that crossed when they did. I had hoped that one day I would meet someone who was like our Esme but I never expected it to be so soon, or so random. But thankful it happened, however.

Jump Around

2011-09-16T18:55:00.000-07:00

I'm here. Alive and well. As is the rest of the family. But I'm tired. There are more than a handful of things to blog about but frankly, at the end of the day, my brain is too tired to do it. Life with two kiddos is no joke and I'm pooped.

But, I must not wait to share what Oia is so proudly doing these days. Jumping has been an ongoing PT goal which began prior to her surgery. The idea - evenly bending both knees, equally pushing back up with both feet, clearing the ground ever so slightly, and then landing on BOTH feet without falling.

First video is just prior to surgery. These are the first successful attempts at hands free jumping (no adult assistance) on the trampoline. Notice how her right heel remains up and right leg has a constant bend at the knee (too tight to straighten).

Last video, post surgery. Right foot is flat, leg is straighter. With practice, she'll get better at bending both knees and pushing up from a lower crouch but for now, this is pretty darn awesome.

A New Experience

2011-09-02T13:59:00.000-07:00

The Littlest Teaster, our beautiful Esme', is 6 weeks new. Already. And for the first time in my life, I'm understanding what it means to have time fly. I'm awestruck by this new baby of ours that looks at me and then holds onto my very presence with an effortless stare. She locks into my eyes with hers because she can. She sees me, her mommy. It's a foreign interaction to me from a newborn. Esme' can hold me, and speak to me, with her eyes alone. Only a mother can understand.

My sweet, newborn Oia tried hard to do this very same thing. Over and over again. But could not. She looked over me, behind me, just past me. Often, her eyes drifted in different directions. Still, I loved her so. Perhaps this is why the intentional gazes from Esme' leave me without words. I sit, absorb the moments, and marvel at what a beautiful and natural connection, or bond, this is for a mother and her child.

I'll add this deep appreciation of such a bonding experience to the ever-growing list of unexpected lessons taught by my greatest teacher. Oia, the special little girl who made me a mommy, continues to point out to me each and every day, the finer details of this life. Without her, the priceless details as subtle as simply making eye contact, would slide right by me.

Every child born into the world is a new thought of God, an ever fresh and radiant possibility. ~Kate Douglas Wiggin

Party On

2011-08-29T12:42:00.000-07:00

I guess you could say we've strung out the big #4 this year. We celebrated the day before Oia's birthday with some dear friends who were visiting from North Carolina. Of course, we celebrated the day of her birthday, just the 4 of us, and again yesterday with a belated birthday playdate involving some of Oia's best buddies. We spent the low key afternoon playing on Oia's new playset, visiting, and eating cupcakes. We were thankful that these special friends and their parents could celebrate with us.

A highlight for me this year was watching Oia blow out her own birthday candles. The overrated skill of blowing is fairly new to our Miss as last year she couldn't blow them out. Not even close. It's a skill that's easily taken for granted. The inability to close or round lips and force air out of ones mouth falls under the big bad category of speech and language so given the language challenge she experiences, I was never surprised she couldn't do it, just a little sad about it. I secretly wished to myself during last years unsuccessful candle blowing attempt that she'd be able to tackle those darn candles this year. Well, she's a wish-come-true kind of gal ~ between she and her buddy Landon, those candles didn't stand a chance.

Operation Playset

2011-08-27T13:22:00.000-07:00

I know all too well what a sensitive and bittersweet subject playgrounds are for those who live within the walls of the special needs world. Thankfully, as Oia has grown and developed physically, I've been able to rid my heart of most of those playground anxieties and today I'm in a much better place where slides, play structures, and bounding children are concerned. It wasn't even until this summer that Rob or I began contemplating the purchase of our own play structure suitable for Oia, simply because navigating outdoors was still quite a challenge and sometimes a hazard. We shopped around, both locally and online, for the most suitable and sturdy setup we could find.

I had my vision for what I thought Oia would like and found one that was close to perfect. With a few modifications, we made it just right. We requested handrails to be added to both sides of the stairs and ladder. As is, the structure was only provided with a rail on one side. The extra railing is key for safety of course, but it's great for encouraging the use of two hands as well. The ladder needed to have flat, wide steps instead of rungs. Rounded rungs are an accident waiting to happen for a girl who has been known to raise to her toes when walking or stepping. I'm not crazy about the rock wall that the structure came with but I chalk it up to good therapy. One day, she'll be able to conquer it, I'm sure. But overall, this girl deserves a playset. She's worked mighty long and hard to be able to navigate one (although she still requires a spotter when climbing up and down steps).

And so it begins... clearing and preparing the site

Building up the enclosure

Filling the enclosure with a whole lotta' mulch (thank goodness Rob had some extra help)

And the final product

Oia isn't able to safely hold herself and use a sling swing yet (the swing in the middle) but she can sit safely in the basket glider (left) or the toddler swing (right)

Backside of playset; steps, ladder and rock wall

Oia and buddy Sawyer check out the view from the clubhouse

Oh, just imagine the hours of fun that will ensue with Oia's new playset!

Four

2011-08-22T18:43:00.000-07:00

Oia, with each passing day, we love you more and more. You ground us. You amaze us. You are everything to us. Thank you for the best four years of our lives. Happy 4th Birthday, Big Girl!

Back to Preschool

2011-08-15T08:57:00.001-07:00

Today was an exciting day. For Oia, it was her first day of her second year of preschool. She was so tickled to be going to school this morning and the fact that she could wear her brand new backpack was almost too much excitement for her little soul to handle. For me, today meant the end of one really busy summer therapy schedule that consisted of 4, sometimes 5, therapy sessions per week. Add in the occasional doctor's appointment and we were always coming or going somewhere. Our summer was consumed (by things not always so fun) and oddly, a new school year means a slow down for Oia and I.

She is in the same special ed preschool class this year with the same teacher and assistant. It's a good set-up for her and one that I am pleased with. There are a couple returning students from last year plus a couple new ones. She will be going to school every day, from 8:15 -1:30, except for Tuesdays, which is reserved for our usual private PT and ST. She will also get all therapies while at school, but I'm adjusting her IEP soon to lessen her therapy load. I want this year to be the year for academic focus and Kindergarten preparation so instructional time in the classroom must be the priority. I feel like physically Oia is in a good place and we can back off a bit where therapy is concerned.

I'm anxious to see what progress and gains will come this year of our social and vocal butterfly. I'm most hopefully for more language development and if we're lucky, some gains in the potty training department as well. She has so much potential and determination ~ there is nothing she can't do.

Go get 'em, little girl! Learn away!

What's in a Name?

2011-08-12T11:28:00.000-07:00

Many have questioned. Lots have asked. Where did you come up with the name Esme?

Both of our girls were named long before they were conceived. Naming our girls was one of the easiest things we've ever done. I'll start at the beginning...

Rob and I used to live in North Carolina. Oia was newly diagnosed during our last year as residents in Tarheel country. And then just like that, the future of such an innocent baby seemed a mystery. Rob and I were tripping in the dark, trying to find some light, some answers, and the strength to move forward. The lonely and never ending game of wait-and-see had begun. What will our baby with cerebral palsy be able to do? Or not do? Will she be happy? Or accepted? Will she have friends who will love her like we do? There were always way too many questions and never enough answers.

But there was always hope. Some days hope came from a positive therapy session, a sweet note from a co-worker, but mostly it came from a new movement or giggle or simply from a smile from our little Miss. And some days, hope came from the dainty preschooler who lived just 3 doors down. Her hair was dark and curly. Rob and I were quite fond of her. She made us smile. She was well mannered and had a great family. Her visits to play with "baby Oia" were few, but significant to Rob and I. She didn't see Oia has a baby who may have been different. She didn't see the cerebral palsy. In fact, she probably knew nothing of it. I suppose that's the beauty of it all. She just saw our baby as someone to love, to gently play with, to hold. As Rob and I were dealing with the whirlwind of emotions that come with the diagnosis of a child, we were also thankful for the visits from our neighbor girl. They meant a great deal to us. And no one knew but us, but Esme was hope. Perhaps we can say she was Oia's first friend.

That was nearly four years ago. Flash forward to March of this year, my 22w ultrasound, which added another helping of bad news and worse case scenario to our plate. Not one girl with special needs, but now two - this time a baby with congenital heart defects. Rob and I were feeling as though the view from rock bottom was all too familiar and hope seemed to be hiding. We knew we were having another girl and the decision had long been made to name a second daughter Esme. After that ultrasound though, I felt the need to make sense of the situation, to find some peace so to speak. Or at least try to. I sat down at my computer and did a search for the meaning/origin of Esme's name. After a couple searches, I found what I was looking for and it shocked me. The meaning of the name left me frozen and staring at my computer screen.

Esme: "loved", "to love".

In an instant, it all made sense. And suddenly, it was all going to be alright. And just like that, the pregnancy had some perspective. It became very clear to me that our baby was being created and growing just as she was meant to be. Our baby girl, with a unique heart, whose name means "to love", was appropriately named long before she came to be. What else should one do with their heart but to love? Coincidence? I think not. Just another part of the plan. And how lucky are we to be the recipients of this special love?

My Sign

2011-08-09T18:51:00.000-07:00

Esme' is three weeks old already. Our families who have come to visit and help out after Esme's arrival have all returned home. Rob has returned to work. Oia's weekly therapy regimen has resumed. Now, it's just me and the girls and I've been occupied adjusting to our new life. I'm tired.

But life rolls on.... Oia had speech therapy today. I loaded up into the car what felt like all but the kitchen sink and ventured into town with both kiddos in tow. My first time solo with both. On the way there, Oia and I were "talking" (but really I was thinking about how I just wanted a nap, or at least some caffeine). I typically understand very little of what Oia says and mostly I do a lot of agreeing and head nodding. At one point, there was a lull in our conversation so I said "Oia, I love you". I tell her this expecting no verbal response thanks to the significant language delay that we continually battle with, hence today's therapy session. But a few seconds after I told her that I loved her, I heard her spunky little voice loudly yell from behind, "Moooooooom!" So, doing what all good drivers do, I took my eyes off the road and I turned completely around to see what was so urgent in the back seat. And I'm so glad I did because to my delight, I got to see the words I've been dreaming to one day hear. I saw two skinny little arms crossed tightly over her chest and with the biggest grin you've ever seen, Oia was saying, rather signing, "I love you too."

No picture to prove it. No witness to see it. Just the memory in my mind that I can return to whenever I want, over and over again. For now, that trumps what any word or words can communicate. She told me she loved me and I heard her loud and clear.

Sisters

2011-07-30T18:07:00.000-07:00

10 days ago was when I realized that my baby didn't seem so baby-ish after all, instead so big and grown. So able and independent. So tall. 10 days ago my baby became a big sister and the changes in her in just 10 days leave Rob and I smiling, and shaking our heads with utter amazement. Oia is beside herself, giddy and happy, bouncing all over this house. Giggly. Often stopping mid-play to find and kiss her sister, then squeezing her too hard. No jealously here... just an admiration and a new sisterly love that I always hoped I would one day get to experience in motherhood. What a joy and blessing it will be to watch these two angels grow up together...

Our Miracle

2011-07-25T14:21:00.000-07:00

I had a sense during this pregnancy that I would deliver before my due date. For one, I thought there was no way I would make it all the way to the end of July given how large (and uncomfortable) I had become. And second, I just trusted that the big man upstairs would spare Rob and I the agonizing wait of making it all the way, if even only by a few days ~ the wait to find out more answers of the medical unknowns that were associated with our baby girl. And so just as my heart told me, our second beautiful daughter was in fact born 6 days early and perfectly on time.

Labor and delivery went as smoothly as possible. Just as we were promised, there were countless people waiting on this birth and my delivery room was swarming with students, nurses, and pediatric specialists of all kinds ready to take over and care for our girl should any complications arise. Miraculously, we needed not one of them. Our tiny baby came out lively and pink, all three of us crying together. She never left the room. She layed with me, skin to skin, for about an hour until she had to make her first visit to the nursery.

While I lay in a surreal, blissful state watching them weigh and measure our baby just moments after seeing her for the first time, I heard our doctors say how pretty she was, how beautiful and how perfect she seemed. It's probably something they've said countless times to other mothers in the past, but I didn't care. At that very moment, those words were meant for just me, for just us, and our baby, and that's all that mattered. From then on, I knew Esme' was going to be just fine.

She underwent an EKG, an echo, and an abdominal ultrasound, all in the first few hours of her birth day. Late that evening, our pediatric cardiologist came in to share the echo result with us. She was beaming, had an ear to ear smile, and said there was absolutely nothing to worry about. As we knew, our baby has a heart which is slightly rotated (Dextrocardia) and positioned in the middle of her chest but most importantly it's a heart that has no obstructive abnormalities. It is a heart that is structurally sound and functioning properly. It is a heart that is just as special and unique as the little lady our baby will one day grow to become. In addition, all other organs are present, positioned properly, and functioning as they should be.

There have been so many people, some we know and some we don't, who have lifted us in prayer throughout this entire pregnancy. We have felt embraced by the warmest of wishes and we are deeply appreciative to everyone for caring about our baby and this family as much as we do. Tomorrow is a new day and nothing is a guarantee and so today is what we give thanks for. Today we have two very special, yummy little girls who in every way are perfect to us. God knows what He is doing. He listens too. And He's been all ears this whole time.

Meet the Littlest Teaster

2011-07-21T16:58:00.000-07:00

Our tiny, pink, and HEALTHY Esme' Anne was born on Wednesday, July 20th at 933am. (pronounced Es-may)
6 lbs 11 oz
19 1/2 in

More details and pictures to come once we return home.

Appointments, Camp, and Baby

2011-07-19T06:43:00.000-07:00

Oia had two extra appointments last week in addition to her regular therapy schedule. The week was packed but now we can check the dentist and ophthalmologist off the list for a while. First up was the dentist. Her last visit to the dentist was fairly successful, meaning she didn't get too scared and she didn't really cry that much - aside from the scary "spit sucker". That was 6 months ago. Last weeks appointment was a whole different story. Maybe we can chalk it up to progress and a more knowledgeable girl these days but she was not in favor of any part of the dental exam whatsoever. She cried nearly the entire cleaning and exam and at one point I ended up in the chair to hold her in hopes of wrapping up the appointment tear-free. The whole experience felt like torture for both of us. Who really likes the dentist anyways?

The report is that Oia's teeth are clean and doing just fine. She does, however, have a molar with a significant ridge due to what the dentist believes is an enamel defect. The ridge will be a problem sooner than later as it is already trapping food and will need to be worked on but for now I have convinced the procedure-hungry dentist to just keep an eye on it and we'll cross this bridge when it's of an obvious bother to Oia. The procedure to eliminate the defect would require a slight sedative and more screaming and tears will ensue. I'm not up for it. Our girl needs a break.

Later in the week, we headed to northern VA for Oia's ophthalmology appointment. They tried to take pictures/measurements of Oia's eyes (again) but no such luck. Only if your 3 year old can remain as still as a statue, not blink, and stare at one tiny hole positioned just in front of her nose for several seconds is this task even possible. Following that, an eye tech flashed an image of a birthday cake on the wall in front of Oia and asked her what it was. Again, another fail. Not the best approach for a girl who struggles to communicate. I told the tech that Oia can't speak what she sees but that asking her a yes or no question would be more reliable. However, in this case, it wasn't. The black and white birthday cake on the wall was far less interesting than all the eye gadgets and fancy machinery in the room so she was too busy pointing around and asking "whass tha?" One day she'll nail those darn eye exams.

Dr. P said all seemed as it should. Eyes are doing as he expected and her cataracts haven't changed in size. Her eyes still will cross from time to time without glasses and Dr. P assured us this will probably always be the case. Her eyes are healthy, but the muscles that control them just have a mind of their own. As long as the crossing is minimal or nonexistent with glasses then we are in good shape. We must continue to patch via Atropine drops 2x/wk to continue to strengthen the right eye. We would use adhesive patches but at this stage of the game, Little Miss will not stand for it. So drops it is.

In 6 months we return to both doctors for another check-up.

And in other news, this morning is Oia's last day of Speech Camp. Camp was held for three consecutive Tuesday's this month for 2 1/2 hours each day. My goal for this camp was to provide Oia with some adult structure (without me) that mimicked the school environment while getting to play with a therapeutic purpose. I found this camp offering in our area via a local publication and the ratio of campers to therapists was 6:2. That fact alone sold me. I called to make sure that the therapists were comfortable dealing with children who had mobility issues before registering and thankfully they were. Each session is themed based and the campers get to participate in making their own snack and lunch. It's been a wonderful and fulfilling experience for Oia. She loves getting her speech bag ready for camp each Tuesday and happily waves bye-bye as we leave her at drop off. It's pretty neat to see her so happy and willing in a new environment. And as it turns out, the therapist in charge of the camp has Apraxic training. It's a win-win all the way around.

And the littlest Teaster is coming sooner than later... I hope. We are so ready. I have had a long night of mild contractions but seems they have stopped for now. Who knows - this could carry on for days. Though I have experienced irregular contractions off and on for the last couple of weeks now, this activity is getting more and more frequent and a little more intense. My due date is just 7 days away so we have to just continue to wait this out. I have a check-up scheduled for Thursday so we shall see what's going on then. Stand by.

Happiness is...

2011-07-15T18:25:00.000-07:00

found in the last few snuggles as a family of three, while we anxiously wait to become a family of four.

Just 4 Words

2011-07-11T04:22:00.000-07:00

One afternoon last week, Oia was perched on my legs facing my enormous belly. She loves to rub it, pat it, kiss it and feed it (yes, she tries to offer her sister snacks already, chips and blueberries to be exact). I asked Oia what she would say to the baby when she sees her and she replied by waving to my stomach and said "Hey, Baby!"

I then asked Oia if she was ready to see the baby and she of course, said yes. Then, I asked Oia to try and say "I want to see you baby" and she clearly and effortlessly said in response "I wanna see baby!" Rob, who was in an adjoining room, heard her and we both began cheering and clapping like crazies at a Super Bowl game. Hearing Oia speak her first ever, 4 word sentence is certainly a victory worth celebrating. I repeated the sentence again and so did she, with ease. She squealed with delight and pride as her parents acted like fools. It's a tiny break through, no doubt. We are chippin' away at the Apraxic monster, slowly and one drop at a time.

Photo of our lil' talker from today's hippotherapy session.

The Stranger at Starbucks

2011-06-30T12:48:00.000-07:00

Today started as any other Thursday with a full hour of Speech Therapy. We drive to this particular building at least twice a week for one service or another - all services I'm thankful for but don't always look forward to. Sitting in on speech session after speech session and witnessing the challenges that Oia has to overcome in order to communicate breaks my heart over and over again. I leave each session feeling so proud of my girl yet all the while thinking of the road that still lies ahead. Progress is so slow that I question whether it's even happening at all, although I know it is. I confess. Not being able to understand your child is pretty darn hard to deal with and Apraxia just sucks.

So feeling a little down, I made a little detour by Starbucks before heading home. Oia was in need of a snack anyways which made me not feel so guilty about treating myself. I ordered our drinks and a chocolate chip cookie for Oia then we headed on our way.

On our way out of Starbucks, we passed a lady sitting alone at one of the cafe tables just outside the door. She was clearly just enjoying her morning, with a crossword puzzle book on the table, but more there to people watch I assume. Oia hobbled up to the lady as she proudly sucked on her strawberry frappe, said hi, and then continued on past. I too exchanged a hello with the lady, wished her a good day, and on we continued. I then traded Oia's drink for her hand so we could safely walk across the parking lot. Oia is slow. We take our sweet time. She likes to lead the way. She chose to veer left, walk up a curb, take a few steps, then step back down again. She passed by another stranger to whom she shouted one of her famous hi's, clearly earning his attention. Finally, we made it to our car. Oia decides it's best if she climbs into the car herself, which again, takes forever but more power to her. As I'm patiently waiting for Miss Independent to make her way into the car (mind you, my hands are full with both our drinks, a snack, car keys, and my wallet), I'm startled by the lady we just saw sitting at the cafe table, who at this point has just rounded the back of my car and is now standing next to me. A million things ran through my mind. The protective, momma bear in me was ready to attack if need be but then the lady spoke and I immediately backed down.

Looking at Oia, she says, "She is my hero".

"Oh, yeah?" I say.

"She's so beautiful and she spoke to me and made my day. I really enjoyed watching her walk away, too. She is so happy with who she is and it's wonderful to see. (pause) She is just so beautiful."

Speak no more, lady, you just made my day.

Naturally, I thanked her for such kind words, we shared a few more words with each other, then introduced ourselves before parting ways. Oia finally made her way into her car seat and soon we were ready to hit the road again. My mocha tasted especially sweet on the ride home and my ho-hum mood brought on by another slow speech therapy session was diminished. Those out-of-the-blue words from this complete stranger has kept me floating throughout the day. I may still be floating tomorrow.

This lady could have only thought these words as she watched Oia and I walking through the parking lot. Instead, she chose to catch up with me to share what was on her mind. Her random act of kindness, which only lasted just a few seconds, meant a great deal to me and frankly, it was just what I needed this morning. All too often in this rat race known as life, these particular moments seem to be a rare occurrence. Perhaps we should all live to note the seemingly small things and then bring them to light to brighten someones day. Those who do are the real "heros" in my opinion, and the stranger today at Starbucks was mine.

3 Weeks Post Surgery

2011-06-24T12:16:00.000-07:00

If there is one thing to be said about Oia, it's that she is so accepting of this life, and more resilient than her parents. She doesn't always know how life is supposed to be, but rather trusts that we as her parents do, and that in turn works to her favor and I guess, essentially to ours too. During the postoperative 3 week period, she quickly found ways to maneuver and resume her usual activities, ie. walking, crawling, stepping up or down steps, and even climbing (all of course with very close supervision at all times). That even includes powering herself all the way up to the back of the couch, which she straddled and bounced on as if to be riding a horse. Would I normally let her do this? Probably not. But how in the world do I pull this proud face off the back of our couch when she worked so darn hard to get up there?

Three weeks have passed since the surgery. It wouldn't be an exaggeration to say she breezed through these last 3 weeks without one complaint. Really. I, on the other hand, couldn't wait for this morning's cast removal appointment with her ortho doctor. Felt a little like Christmas morning to me. How would her incisions look? What would her range of motion be now? Would any gains be immediately noticeable? Would stretching her be easy? Would she be able to stand and walk right away? Or would she even want to?

So, the cast came off and incision sites were hard to notice. There was some slight bruising around her foot and ankle but it's all very normal. Her ankle seems a little puffy, but again, this is normal too. Doctor said it's important to keep her KiddieGAIT (AFO) on as much as possible while she is up and on her feet since 3 weeks is still not enough time to be completely healed (still another 2-3 weeks for complete healing) but at this point it is safe to be out of the cast. At doctor's request, I put on her brace and shoes after the cast was removed and we put her to her feet with a room full of staff watching. Oia didn't hesitate - she slowly walked about 15 feet across the room. Her leg is overall weak and her knee is very stiff but with continued use and PT, she'll learn the feel and control of her new range and hopefully be walking more symmetrical and taller than ever before. In fact, she already is. If today is any indication of what she'll be walking like in the future, then I know for certain we made the best decision to have this procedure done. Results were immediate and obvious to all who were watching. I felt a little teary as this was my view leaving our appointment...

Perhaps some before and afters may paint a better picture.
Oia's typical stance morning of surgery, sans brace: high on right toes, bent knee, left side bearing most (if not all) of her body weight.

Today's stance, 3 weeks post surgery, day of cast removal: flat right foot, straight(er) knee, taller stance (no crouch) and more level at hips (although this picture just shows legs). You'll note in this picture the difference in size of Oia's calves. This is typical for kiddos who have a weaker extremity though the difference is fairly mild.

Below video shows walking at PT session with SMO insert only, 1 hour after cast removal. Note the weak dorsiflexion (toe-lift) in right foot. Her KiddieGAIT provides assistance in that movement. She does have more doriflexion post surgery which is promising - it's one of the first things doctor checked and commented on as soon as her cast was off. Naturally, right knee is stiff and she's a little unsteady but overall, looking good.

We're are pleased and love what we see. Flat feet are beautiful. I think Rob and I both feel a sense of relief that the hard part is over. Now, it's all a matter of learning to walk with new range and flexibility, regaining strength, and increasing right side dorsiflexion. It's nothing our little Miss can't handle.

Chocolate Covered Oreos, Anyone?

2011-06-14T18:23:00.000-07:00

Just a slight disclaimer: I do dress my child. Given the yummy mess that was about to take place, we stripped Oia of her clothing so she could carelessly indulge in all the chocolate her little heart desired. The pool is still currently off limits for another week and a half so we have to get a little creative indoors.

Determined but not Bound

2011-06-10T18:31:00.000-07:00

The days since Oia's lengthening surgery are passing by fairly smoothly and better than expected. I have to admit, when I learned that Oia would be required to wear an immobilizer for 3 weeks post surgery, in addition to her cast, I doubted she'd be able to walk during this postoperative period. Shame on me. She's figured it out. She's been walking with the new garb since Tuesday evening - which was just 5 days after surgery. I swear, it's as if this girl wears an invisible bag slung over her shoulder, one that contains endless amounts of determination and patience and she pulls out just the right amounts of each whenever she needs them to slay the challenges that come before her.

You want to cut and stretch my Achilles tendon and sever my hamstring in two places? "No problem", says Oia.

Post Surgery: Day 4

2011-06-06T19:10:00.000-07:00

Four days down, post surgery, and things are moving along pretty well. We have no idea at this point what the gains and outcome will be yet from this procedure but one thing is for sure - Oia is ready to walk again. That's promising.

We have to gently bring her to her feet each day to at least have her bear some weight on her right leg. Overall, she is willing and today she walked a lot. She steps with assistance and support but this is mainly due to the fact that she is wearing a knee immobilizer. The immobilizer is providing a greater stretch to her hamstrings as she heals and she has been wearing it all day and night, without complaint, since the surgery. Today was actually the first day it came off for any amount of time (other than an incision check) for hippotherapy. After the hippotherapy session ended, I seated Oia on my lap so that the immobilizer could be put back on. I expected some resistance, er, a little fit from the Miss. Instead, Oia lifted her leg to help me put it back on - on her own will. Amazing.

Oia has been pain med free for the last 24 hours. Her knee is slightly swollen but nothing out of the ordinary. She is not in any discomfort that we can tell, another promising sign.

We are just continuing with life as we know it. Having my mother here to help with the lifting and carrying and entertaining has been a huge help. Though mentally, Oia is getting bored easier since her independence has been temporarily stolen but with a therapy session scheduled almost every day of the week, she stays stimulated and busy enough. Today Oia resumed hippotherapy since school is now over for summer. What better way to get around when you can't walk? She was thrilled to be back in the saddle again and rode like a pro - cast and all.

These picture are from today's session. Check out the control with Righty and the rings.

Post Surgery

2011-06-03T16:19:00.000-07:00

Early Thursday morning was Oia's surgery and the procedure went well. Speaking for myself, I didn't really sleep a wink the night before, just nervous for the morning to unfold.

We arrived at the hospital by 630am. We were walked to our room, changed Oia into her gown, answered a few last minute questions, vitals were checked, dotted line signed, then around 800am Oia was taken from us by the anesthesiologist and carried through the forbidden double doors ~ without us ~ the part I just can't handle. Rob walked with her as far as he could but I on the other hand am exceptionally emotional these days and stayed behind to release my emotions privately from behind the door of our little waiting room. Oia was cooperative and trusting the entire time we waited, just as I knew she would be ~ saying "okay" to everything the doctors and nurses explained to her. She is so small yet so big.

Rob and I tried to enjoy our breakfast date in the hospital cafeteria... sounds lovely, doesn't it? Then surprisingly, after just 45 minutes, the surgeon called us to say they we're nearly done and we would be notified once she was wheeled into recovery. Ten minutes later, we were headed back upstairs to cradle our groggy and very uncomfortable girl. Big belly and all, I crawled into the bed with Oia to hold and comfort her and let her sleep off some more of the sedative. She was aware of her environment and us (which was not the case after her eye surgery) and in and out of sleep. She showed some signs of pain by flinching her leg so we requested some pain meds for her which thankfully came quickly. Oia was in recovery for about an hour and a half and even though she could hardly hold her eyes open, she still mustered the strength to utter a pitiful "go". Translation: "Get me the heck outta here!"

Once getting home, we set up camp in our king bed, turned the tube to cartoons, and alternated sleep with play, all at her beckon call.

It wasn't until about 230 yesterday afternoon that we saw a slight smile again. She devoured a bowl of grapes and blueberries, chugged lots of drinks, fussed on and off, but was surprising manageable. Then, bed time came and that all changed.

Oia and I slept in the guest bed together so we could have more room. I needed to be by her side to reposition her as necessary. Despite the meds, she tossed and turned and fussed all night long. I resorted to a dose of Valium around midnight but even that didn't seem to help much. She was just plain uncomfortable. Needless to say, morning came way too quickly.

Today has been a long day of carrying, sitting, and lots of wagon rides which she is now completely sick of, and a stroll in the jogger.

We have not forced to her stand at all, in fact, we are kind of reluctant to even attempt it (even though doctor says to do it as soon as possible). I don't even expect her to want or be able to do it at this point. Oia, on the other hand, tried to get to her feet a few times later this afternoon. Since she initiated being on her feet, we strapped her walking bootie over her cast and put a tennis shoe on her other foot but as soon as her feet tasted the ground again, she screamed. I applaud her for trying, she even attempted several times after that. She finally worked up enough endurance and shook off enough pain to take a spin around the house on her brand new scooter, which must have been simply irresistible given her previous cries.

Our plan is to continue the pain meds for another day and see where we should go from there. Right now my angel is down for the night and sleeping peacefully, with the help of Valium. I think tonight we may all get a little sleep, or so I hope.

One day down. Feels like way too many left to go... thank goodness my mom is here to help us. We can do this.

Surgery Eve

2011-06-01T13:37:00.000-07:00

In about 10 hours, Rob and I will squeeze Oia extra tight and silently pray that we're making the best desicion for our girl and her long term mobility as she undergoes lenthening surgery on her right leg. More specifically, PERCUTANEOUS MEDIAL HAMSTRING RELEASE and TENDON ACHILLES LENGTHENING.

Sounds like an awful lot for a little leg of just 3 years to endure but our girl is brave and mighty. Hopefully tomorrow, I can be too. I'm trying not to predict what the recovery period will be like simply because there is no way to know for sure. All kids recover differently, or so they tell us. I know there will be tears, some pain and discomfort, and perhaps some confusion, but in my heart I know each hour, each day, each week, will bring us back to our "normal" - and if we're lucky, even better than our "normal". I pray.

Stay tuned...

Good Things

2011-05-29T18:26:00.000-07:00

No amount of stress or worry that lands in front of us can mask the good things that happen in this life ~ here are some of the latest happenings for which I am thankful for.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Good-bye Preschool, Hello Summer Break
Last August, I carried my 2 yr old into her first day of preschool - a special education preschool that is housed within a public elementary. I carried her because she was recovering from a serious ankle injury and was unable to walk. Talk about a nervous momma... she was tender, just days away from her 3rd birthday, and I had never experienced dropping her off anywhere with anyone. About 2 months into the school year, she was moved into a new classroom with a new teacher and it felt like the first day jitters all over again. But thankfully, as I came to know her teacher and class assistant, I was at ease leaving her in the hands of these two ladies and thankful for the change.

Last week, she celebrated the close of her first year in preschool. It's been a positive experience with little tweaking for next year. Preschool is just one year in the scheme of many school years yet to come but it's not to be underestimated. The transition from Early Intervention into Preschool was a big deal. Our girl has come a long way in a year's time. Socially, she's a butterfly, even without many words. She's made friends. Physically, she is stronger, braver, and more reliable. Academically, she is making great progress and loves the school environment. Emotionally, she is over the moon happy about everything. To say she has completed a full year of preschool makes me so proud of her growth, resilience, determination, and sense of independence. Keep up the good work, big girl!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
New iPad
Oia now has her own iPad. (We used one on loan from her school earlier this winter.) We have been jumping in and out of hoops since January to get her one but with the help of a waiver and our wonderful pediatrician, Oia was finally granted one of these tiny miracles, complete with Proloquo2Go and TaptoTalk. Our hopes with the iPad is that Oia uses this as a learning device, not necessarily as her primary means of communication. We also hope to use this as an assessment tool; quizzing colors, numbers, letters, key words, etc. due to her limited expressive language. At this point, I vaguely know what she knows. Oia is so motivated by this and we're eager to see what she is able to show us with it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Peace with Pregnancy
And lastly, I am thankfully nearing week 32 of this crazy ride called pregnancy. With good reason, I've spent every day thus far worrying about the baby I've yet to see and hold but one who already has a diagnosis. However, with the tiny dose of hope that was handed to us at our latest echo a week ago, I hesitantly say that I am somewhat able to relax now and enjoy what is such a limited and precious time in a woman's life. With each bump, kick, and hiccup felt from within comforts and assures me that our baby girl is growing strong and will be able to hold her own upon entering this world. I want her in my arms now but I'm trying to savor and enjoy the last weeks of what may very well be my last pregnancy.

Happiness is...

2011-05-25T13:36:00.000-07:00

peeking around the corner to see this, which is Oia pretending to help her baby doll learn to walk.

The Littlest Teaster Update: Part III

2011-05-23T18:33:00.000-07:00

To recap, here's Part I and Part II.

Before I begin, let me say that last week my high risk doctor arranged for us to meet with a doctor from the NICU. Our meeting with this doctor was intense as all possible scenarios with baby and her health were mapped out before us. All the this and that's that could happen were thrown out on the table. I couldn't believe my ears, the medical language was terrifying. We were talked through all possibilities, right down to the very worse case scenario, which was open heart surgery on our newborn. I literally understood about 5% of the conversation but was still scared out of my mind. Our meeting ended with a tour through the NICU which was an experience that I could have never prepared for. This could be us soon, I thought. All the more reason to be anxious for today's appointment in the hopes of having a more clear picture.

So today was our third fetal echo. I am currently 31w. The concerns for today's appointment (concerns noted from last echo one month ago) were as follows:
1. "flap" in right atria that should not be present
2. abnormal (meaning some reverse) blood flow, questionable as a result of said "flap"
3. questionable transposition of great vessels
4. mesocardia (heart located midline) and dextrocardia (heart malrotated, rotated backwards)

Here are the basics, as best and as simply as I can explain them, from today's scan:
1. The "flap" wasn't seen today. It appears to be absent and doctor said that doesn't mean it's necessarily gone but that it's entirely possible this piece of tissue has been absorbed into the body. To think that this potentially obstructive flap is gone, something that was once believed to warrant surgery for it's removal... well, I'm calling it a miracle.
2. Today's scan does not reveal any abnormalities of blood flow, meaning all blood enters and exits the heart just as it should and is supplying the body appropriately. Perhaps this is a good indicator that the flap really is in fact no longer present.
3. We do not have a case of Transposition of Great Vessels.
4. Mesocardia is still a definite diagnosis. This is not, however, a true diagnosis of Dextrocardia. Yes, the heart is rotated, enough so that it almost appears to be positioned backwards, but not completely.

Knowing what we know today, this is good news. Really good news. But, Rob and I refrain from celebrating as the rug as been pulled from underneath us too many times before. We still have 9 weeks left and as her heart continues to grow, it can also continue to change. With the information we have today, our doctor feels confident that no surgical intervention will be necessary. Baby will still be given an echo after delivery and we will still have a team of specialists waiting and ready to care for her once she makes her grand entrance.

I will not be seen for a fourth fetal echo. At this point, doctors have seen all they can possibly see. I am okay with this. We finally feel a bit of peace in this situation. It's not a typical scenario but one that seems manageable on many levels. Rob and I are aware that there are still some unknowns but we're confident that whatever is waiting for us around the corner is no more than we can handle.

Back to the Beach

2011-05-17T17:32:00.000-07:00

With our minds focused on what is waiting for us just around the corner (Oia's surgery and new baby concerns), Rob and I decided to take advantage of one more weekend away. Rob had a board meeting yesterday in Virginia Beach so the three of us headed out of town Friday afternoon for an impromptu "vacation". Virginia Beach is barely a 3 hour drive - just enough distance to feel removed from the daily grind.

Oia checking out the view from our room moments after arriving; she kept saying "Woooooooowwwww" while attempting to jump up and down.

We drifted through the weekend with no plans in place. For us, it's the best way to unwind. Shortly after check-in, I was thumbing through a beach guide that I snagged from the hotel lobby and discovered Grommet Island, a 15,000 sq ft all accessible beach park and playground located on the beach.

I have no other experience in accessible playgrounds (because unfortunately they are far and few between) so therefor no scale to compare this one to, but it did have some impressive features. There were ramps onto wide structures, raised sand tables, a roll-on rocking ship, soft all-weather flooring, wood decking for easy access over sand, and beach wheelchairs just waiting for a spin along the shore. My heart was happy to be there, that this playground was there, for all the kids who deserve playing on a playground too. I thought of all the kiddos I follow on a regular basis and smiled as I imagined each one playing at GI one day.

The newest fan of Grommet Island

Another highlight of our weekend was taking Oia on her first outing to a zoo. I've wanted to take her since she was just a baby but there's always been a million reasons why we haven't gone yet. But wait no more, we spent our warm and sunny Sunday aimlessly strolling the Virginia Zoo in Norfolk. Oia was fighting a fever all day but remained tolerant and in the stroller for the most part. Not sure what animals she really saw from her stroller view or what was most interesting to her, although we pointed them all out to her as we saw them. I made sure to take close-up photos of all the animals we could see and soon I'll compile a picture book of zoo animals for us to enjoy together.

No trip to the zoo is complete until you've toured the grounds by train, which Oia loved...

And no trip to Va Beach is complete until you've rode a goofy, family-style bike along the boardwalk. Again, Oia loved this too... must be something about riding while unbuckled that makes her little adventurous heart sing. (I actually rode holding her in my lap while she pretended to steer the bike.)

This will more than likely be the last adventure our little family of three will take. Soon, we'll be a family of four. We savored every moment. Spending time with those you love the most is always good for the soul... throw a little sand in the mix with the sound of the ocean crashing around you and there's no reason to not smile. It was a lovely weekend, indeed.

Blogger Did It

2011-05-15T17:30:00.000-07:00

Those of you in Blogger know the recent shutdown that occurred. It caused a brief panic attack for me. Thankfully though, Blogger didn't eat any of my posts as it did to some others but it did eat some of my beloved comments from the last post titled Juggling Surgeries. I appreciate all comments but unfortunately, some I didn't get to open and some that were opened are now drifting in cyber space and nowhere to be seen again. Don't blame me, Blogger did it. Keep visiting and keep commenting...

Juggling Surgeries

2011-05-11T08:07:00.000-07:00

** Warning: This post is winded and probably only of interest to our family so either grab a coffee or close out now.

I've tried to sit down at this computer several times in the last 24hrs to recap on a few things but my head won't stop spinning, so therefor the words just aren't coming out right. To say I'm walking around in a numb state of mind may be an accurate statement. The reality of having two kids, both with needs, is beginning to sink in and the juggling act has already begun even though the littlest Teaster isn't even here yet. I'm doing my best to stay strong, stay focused, but I cave and admit, it's overwhelming right now.

Between my frequent and rather lengthy high risk appointments and fetal echos, and Oia's therapies and appointments, the emotional load is heavy and my calendar is full. I'm still learning new medical lingo each day, all pertaining to my kiddos, but all I want to be is mom. Plain and simple. Just a pregnant mom. Not nurse, not doctor, not PT, OT or ST. Just a plain ol' mom.

I took Oia to PT yesterday for her regular Tuesday session. We were planned to begin the taping method on Oia's upper leg in hopes of relieving some tightness. Her tightness has always been a priority of ours but it's been at the very top of the list now for the last 8 months or so. It seems she is sprouting like a weed which is what any mom hopes for but growth doesn't play nicely with a kid who has CP or spastic muscles. Oia can not straighten her right leg without the force of an adult to do so and as one can imagine, this stretching is very uncomfortable for Oia and actually it is quite difficult for the adult to manipulate. We have been in a holding pattern consisting of noninvasive techniques (including Botox, serial casting, new bracing, and now a knee immobilizer for night time use), all until our ortho doctor feels like Oia is old enough and ready for lengthening surgery.

With that said, we did not tape Oia's leg yesterday. Since Oia had an appointment with her ortho doctor following the PT session, we felt like it would be best to hold off on taping since the tape may alter her "normal" walking pattern and then doctor wouldn't be able to see Oia's current level of range/movement/mobility with tape.

We drilled our doctor with questions and future possibilities. Should we try Botox in her hamstrings this time since we didn't inject them with the last round of Botox? Both legs or just the right? Should we consider a gait study from the gait lab for a specific reading of Oia's leg issues? Thoughts on a knee immobilizer for night time? When can we begin discussing lengthening surgery?

He shot the Botox idea down fairly quickly, stating that in his experience, Botox doesn't take well in the hamstrings. I'm sure some people will beg to differ but we follow his word. He shot down the gait study fairly quickly too, stating that Oia is still small and that there would be a lot of "noise" on her data - whatever that means. And then there was talk of surgery...

Rob and I are ready for this. We have mentally prepared ourselves for this long ago. We are very practical people who want results, results that will be of great benefit to Oia. This dappling with Botox, casting, and anything else we've tried, is essentially a crapshoot. It may help, it may not. They are methods just toying with time, methods that Oia has to endure. But, yesterday doctor was on board with surgery and ready to talk more about it with us. In fact, he was so on board with the whole idea that he even tossed out the possibility of doing this as early as NEXT WEEK. I was little shocked since he previously mentioned that he typically likes to do lengthening on kids near the age of 5 or older. Oia is barely 4. He says she's ready. He even bravely stated that if we do this surgery, this could very likely be the only surgery she'd ever need.

Here is where it gets overwhelming. I now have two kids to consider. One who needs surgery now to better her quality of life and one who will "more than likely" need surgery once she is born. That's two kids, two surgeries, all in a span of less than 2 months. In addition, I'm uncomfortably pregnant and Oia will be immobile for a short time during the recovery process. Do you see the picture? How do we juggle this now?

Our initial thought was to schedule Oia for surgery after we knew what the cards held for the littlest Teaster, meaning after she was born. But, I've said all along that I want NOTHING to stand in the way of what Oia needs and when she needs it and waiting on the arrival of baby would be doing just that - prolonging what Oia needs. At the same time, we know nothing regarding baby's medical needs and in worse case scenario, with surgery and recovery of a newborn who has congenital heart defects, the process of a complete recovery can take months. That pushes us to winter before Oia gets the surgery she needs.

Long, long story short, here is the plan. Get Oia's surgery (and recovery) over with before baby arrives, pregnant and all, I have to make this work. So, June 2nd it is. I'm recruiting help (and digging within for super-human powers) to care for Oia during this time because I can't possibly do it all by myself while being 8 months pregnant. Little Miss will get the surgery she needs, be casted for a subsequent 3 weeks and then learn to walk with new, hopefully less restricted legs. And if all goes well after it's all said and done, come late July she'll walk her tiny, proud, little self into the hospital and up to whatever room her little sister is in to hug on her momma and meet "her baby" for the very first time.

I just pray we're making the right decision - for all of us. For now though, we're off to a neurology appointment... this ride never stops.

A Sweet Day

2011-05-07T17:43:00.000-07:00

Tomorrow is never a guarantee so I feel very fortunate and blessed today to be a year older. And spending my day in a strawberry patch with a giddy little girl dripping in strawberry juice because she preferred to eat every ripe strawberry as opposed to just picking them was all the birthday gift I needed.

Oia navigated the strawberry rows well, though it was very difficult for her. The rows were narrow and uneven so Rob and I took turns holding her hand for most of the time but of course, she always had one hand free as she ate strawberries the entire time! Last year she couldn't get enough blueberries... I think strawberries may be the new favorite this year.

To make the day even sweeter, Oia's classmate/friend Natalie and her family joined us. Oia and Natalie were tickled to be together which warms this mommy's heart. They are two very special girls indeed.

After we piled our cartons full of strawberries, we relaxed with a picnic lunch topped off with desserts, all of the strawberry variety of course, then it was off to our favorite local arts and crafts festival. The girls rode a train, played on the playground, made their own doll magnets, and the grown-ups were still able to manage a little shopping. It was just a beautiful spring day with great company - another day to be thankful for. Life is sweet and 34 feels good.

KiddieGAIT's

2011-05-05T12:36:00.000-07:00

So, a while back I mentioned that Oia was a "model" for Allard, the company that makes KiddieGAIT braces. As part of the evening, Oia was able to demo the new brace while a room full of therapists and other related specialists watched her perform/walk while wearing it. The goal for Rob and I in this event was to see if this style of brace would be more beneficial to her than her previous pairs; all made by Cascade, which we knew were not the best braces for her. Cascades, for Oia, seemed to limit movement as opposed to facilitate it.

Pictured is the KiddieGAIT shown with an SMO insert, all inserted into Oia's shoe as shown:

It's been roughly a month now since wearing this KiddieGAIT and after much analyzing and discussing, the consensus is that this brace isn't has miraculous as we hoped it would be but it is still the better option of the two.

Here are the two main issues we are facing:

~ Toe walking. Oia has always walked high on her right toes. Left foot has the range and tone to remain flat but in order to make life easier for herself, Oia has begun raising to her left toes in recent months to level the playing field, so to speak. Image walking on just the tippy-toes of one foot... smart girl has figured to just walk high on both feet. She lowers her left foot to flat while stationary but resumes on all toes again in motion. Left leg and hip bears the majority of her weight, if not all, while standing.

~ Hamstring tightness and knee flexion, right side. Regardless of the brace, either Cascade or KiddieGAIT, Oia's ankles are always correctly positioned at 90 degrees. The problem is her inability to straighten her right knee due to very tight upper leg muscles. We have always been so focused on the muscles below the knee more than the muscles above the knee and the KiddieGAIT's make this upper leg issue more evident. I guess we chalk this up to a positive as it is quite clear where to shift our focus now.

By comparison, the KiddieGAIT functions similarly on Oia as the Cascades did. No obvious changes have been noted other than the fact that it does seem to allow Oia a more symmetrical gait, or equal strides. It is a more open brace which doesn't cause her foot to sweat as much and what is even more important to me is the fact that this new brace is obviously more comfortable to Oia. At the end of the day, her right foot is not swollen and purple-ish which is a true indicator that her foot is not fighting the restrictions that the plastic Cascades posed on her foot.

So for now, we will remain wearing the KiddieGAIT. Oia has an appointment with her ortho doctor next week which can't come soon enough. We have our plates full of questions regarding another potential round of Botox, this time in her right hamstring and the biggest of all questions - lengthening surgery. We know this is coming sooner than later and frankly, we're ready to do it as soon as possible. We have tried serial casting, Botox, experimented with bracing, and next week we will even be dappling with the taping method so stay tuned for that adventure. There is not much else left to ease the tightness aside from surgical intervention. Hard to believe that after almost 4 years, that's where we are already.

The Littlest Teaster Update: Part II

2011-04-25T17:38:00.000-07:00

Okay, a month has passed since our last ultrasound and fetal echo. To recap, go here.

Since that time, I have literally counted down the days until our next appointment, which was today. I woke feeling excited, relieved that perhaps our time in limbo land was over as answers may surface with today's echo and ultrasound, but soon the excitement just turned to nerves and stress. I was not naive to the fact that any news at all, good or bad, could be delivered to us during either appointment.

I'll keep this brief and explain as best as I can, though I am still trying to educate and understand myself. My heart and mind are still trying to grab ahold of all the unknowns and new medical lingo that have all too quickly become a part of our youngest daughter.

Things we knew going into today, found at 22w:
~Baby has congenital heart defects, namely Mesocardia (heart positioned midline as opposed to left side) and Dextrocardia (heart rotated backwards).

~Despite the location and position of baby's heart, we (meaning docs, Rob and I) understood that baby's heart functioned properly with all appropriate valves, chambers, atriums, etc. and with proper blood flow tracts.

Things we learned today, 26w 6d:
~Mesocardia and Dextrocardia are still the case; they don't miraculously correct themselves, and Transposition of Great Vessels (which I am still trying to understand).

~Located in one of the atria is a "flap", or piece of tissue, that should not be present. It does not create a full block as there is blood flow past it. However, it remains to be seen until after delivery is this flap should be obstructive to blood flow once baby begins life outside of the womb. If it is obstructive, our baby's breathing will likely be challenged shortly after delivery and in that case, surgery will be necessary to remove the flap.

~There is a question of abnormal blood flow through one of the right atria. Does the flap mentioned above create this reverse flow of blood? That's to be determined... doctor isn't sure.

~Baby is very active and measuring beautifully. In fact, baby is measuring just about 4 days ahead of gestational age. She currently weighs 2lbs 6oz and all other organs are developed and performing as they should be. This is a good sign.

With all of this said, there are still many unknowns. Our doctor today said that of all the scans she has experienced, ours ranks within her top 5% of the hardest to read. The echo scan lasted well over an hour again today and at which point they just stop for the ease of the patient. We will be seen again in 4 more weeks to continue following the growth and heart functions. With each passing month, more of the picture will come into focus which will allow for the doctors to develop a safe delivery plan with the appropriate staff on call to accommodate our baby's immediate needs. In other words, we continue to live in limbo land until this baby makes her way into the world. Until doctors can do a complete physical assessment and echo after delivery, we will not know all the details, nor are doctors willing to speculate or guess at this time. A lot can present itself in this last trimester as baby gets bigger, holds still for longer (which makes for easier scanning) and as the heart grows.

So, here we remain - as residents in limbo land. We are just trying to find the optimism hidden among the sea of unknowns. The only things we know for sure is that life here in limbo land stinks, July seems so far away, and our love for this baby runs deep already, regardless. This is all out of our control - we have no choice but to patiently wait right here.

Breaking through Speech

2011-04-16T19:36:00.000-07:00

Breaking a stone with drops of water is possible if one has the time and patience to do it. However, if given the task I'd feel defeated before I even got started, not to mention that it can't possibly be the most exciting thing on earth to tackle. That's kind of how I would describe speech therapy so I can only begin to image how Oia must feel. Above all, she is working so very hard in Speech that it makes me weepy with pride yet it's almost painful to helplessly watch each session. I observe each one and find myself moving my own mouth as if in some crazy way to make it easier for Oia to move hers. Currently, we are using pictures to help facilitate the vocalization of sentence structure.

Sentences primarily are
1. "I want _____." and
2. "The _____ is ______."

First video captures Oia producing the /d/ sound to attempt the word duck (which is a first) and she also signs sleeping and dog.

Oia has been receptive to words that begin with an /h/ so each session focuses on a few of these words. Good things of this video are Oia's attempt to say hammer and eggs, the signing of more (tap of fists), and voluntarily speaking open and help me. And on the OT front, she is using two hands to open her egg...

An hour session just about puts Oia over the edge but our ST is very understanding. There are some movement activities planned which aids in maintaining Oia's attention span but it still requires both ST and myself to keep little Miss interested. Despite how challenging this is for Oia, she still works pretty darn hard and we WILL break through this barrier, slowly, one drop at a time.

All From Today's Comment Box

2011-04-14T11:44:00.000-07:00

One day I remain hopeful that I will appropriately handle all comments and questions that strangers bounce my way regarding Oia. Just when I think my skin has thickened, I learn that I still have a ways to go. Some days the questions and comments bother me, other days they don't. I suppose it all boils down to the delivery of the question and of course my mood or attitude at the time. Even the seemingly small inquires sting a little simply because they involve the very innocent and naive being that I live my life for and they serve as tiny reminders that we are just a tad bit different than the rest.

Girl: Why are her eyes so kooky?
Oia: (smiling and oblivious to the question and the choice of word "kooky"; reaches out to hold Girl's hand)
Me: Well, I think her eyes are fine. She just has to wear glasses to help her see better.
Girl: Can she really see?
Me: Of course she can. Do you know of anyone in your family who has to wear glasses to help them see better?
Girl: (in deep thought, eyes staring up as she thinks for a minute)
Me: You know, maybe your mom or dad, or grandma or grandpa?
Girl: Um, well, my mom and dad don't wear glasses but I think my grandpa does.
Me: Well, there you go! Oia is just like your grandpa then!
Girl: (satisfied with my answer, smiles and skips away)

Another girl later in the day runs waving by Oia and I. I smile, wave back, and say "hi". After she passes us, she has what seems to be a second thought, then turns around to inform me that "She's drooling" as she points to Oia. I assured her it was okay and that I knew of it and then mentioned to the girl that sometimes that happens. She, too, was satisfied with my answer and continued bounding about.

These are harmless incidents, all coming from very innocent places within these children. I begin to feel the sting, though, when I think about the day that Oia will not only hear these words but understand them too. What will the day be like when I'm not there, holding her hand, as I answer these questions for her? Will she be able to speak up and make a respectable stand for herself? Will they bother her like they sometimes bother me? Oh, I can't even think about it...

But then, there are those who have the power to erase all sad thoughts that fester after these random tests of strength, like the elderly man I noticed staring at Oia in the post office this afternoon. Here we go again, I thought.

"She has a precious smile", he says.
"Oh, thank you. Thank you for noticing. I think she does, too."

Happiness is...

2011-04-11T18:45:00.000-07:00

having a few Easter eggs in your bag when the egg hunt is over.

Apraxia

2011-04-08T11:44:00.000-07:00

Apraxia: another word I'd rather not have to add to my vocabulary but it seems as though I have no choice. This is something Oia deals with on a daily basis. Turning thoughts from within her head into words that exit her mouth is harder for Oia than any physical challenge she endures. I hate it for her.

It has been about a month now since Oia began taking private speech therapy sessions. (She also receives speech once a week at preschool.) Yesterday was another private session and the word Apraxia was bounced around in our conversation more than once. I guess hearing the word slowed me down a bit because never before had this been a topic of discussion with any other of Oia's speech therapists but then again, I'd say that doesn't shock me given the caliber of speech therapists we've worked with in the past. Anyways, I digress...

Don't get me wrong, I know Oia has many things that interfere with her language development but I've never let myself put a name to "those things". Ignorance is bliss, maybe? We've just made sure to keep Oia in ST and submerge her in a language rich environment which means I provide a day-long commentary for everything we do together.

As best as I understand, Apraxia is a disorder of motor planning. Asking a kiddo with Apraxia to speak a word on command feels to them like a nearly impossible task. They have to process the word and "plan" all the thoughts and movements necessary to say the word but the planning part is interrupted; in Oia's case by that little hole so conveniently located in the language dominant, left hemisphere of her brain. Words that come spontaneously are easiest because they come without thought and without "planning". Often times these are words of frustration or extreme excitement. This explains why Oia has been known to speak something completely new and clear only to never be heard saying it again.

This motor planning disorder explains Oia's limited and repetitive use of words. For example, one of the only ways she knows to engage herself in conversation is to ask "What's that?" even when she knows full and well what the object is. It's easier for her to speak what she has mastered than to battle new words or phrases due to her challenges in motor planning.

This disorder also explains why Oia has (hopefully temporarily) lost the ability to speak her name. As one of her goals in ST, she must learn to speak in isolation all long vowel sounds: a, e /ee/, i, o, u /oo/. Even though she's been able to pronounce her name for over a year now, she could not just say /ee/. Now that we've worked so hard with her to say the long e sound in isolation, we have also "messed up" her motor plan and ability to speak "Oia /E-ah/". Another example: Oia can speak "uh-oh" but can't produce just /oh/ which is the long o sound. It's crazy and hard to understand yet this is what I'm told Apraxia can do.

I don't understand it all which is why I welcome those of you who have experience with Apraxia kiddos to share your 2 cents. What works, what doesn't, any thoughts or suggestions? I have a little girl who wants to be understood but no more than I want to understand her.

And for the record, she is currently using picture cards to help facilitate communication and she uses a handful of signs to indicate things of need; drink, eat, sleep, etc. We also have experience with the iPad. At this time though, she'd prefer to use the iPad for play instead of as an augmentative device.

3 Years Ago

2011-04-02T14:21:00.000-07:00

Little baby glasses, MRI, EEG's, the wonder and worry, early intervention, endless hours of occupational therapy, constraint therapy, physical therapy, speech therapy and hippotherapy, orthotics, weight vest, walker, splints, countless doctor appointments, trial and error, tears of heartbreak, tears of pure joy, stares and questions, practice, practice, practice, bumps and tumbles, bruises and bloody lips, surgery, eye patches, serial casting, ankle sprain, Botox, seizure scares, special ed preschool, tiny miracles... all because of one diagnosis.

Today is D-Day, 3 years ago. Today we reflect on what lies behind us for it is what brought us to today - and today is worth celebrating. Today we celebrate the girl who has worked so hard and come so far yet who has only just begun. We have been blessed beyond measure.

A Weekend Away

2011-03-27T15:13:00.000-07:00

Wednesday's and Thursday's ordeal with the littlest Teaster left Rob and I feeling a little unglued and somewhat like zombies. We needed a break from reality so it goes without saying that our weekend plans for a stay in Virginia Beach couldn't have come at a more perfect time. We had been looking forward to this weekend for several months now as it was the 18th Annual 5K for Cerebral Palsy of Virginia. We headed out of town Friday morning and after checking into our hotel, we quickly made our way to the beach to cast away our stresses. The weather was quite chilly but Oia was just tickled to be there. It was a joy to see her roaming the shore, smiling the whole time.

Saturday morning was the 5K where we participated as Team Teaster. Unfortunately, we woke to horrible weather; wet, windy and cold. But regardless of the weather, the company was inspiring and it felt so wonderful to contribute to such a worthy cause for some very deserving individuals.

We may have been one of the very last few to cross the finish but we finished nonetheless and that's all that matters. Just very grateful to have a daughter who could cross the finish on her own two feet...

Later that afternoon, we took Oia to the Virginia Aquarium. I had hoped she would be more interested in the exhibits and sea life than she was - not sure if it was a vision thing, maybe the dim lighting made it difficult for her to see the marine life inside the tanks or perhaps aquariums just aren't her thing. Hard to say but I'm glad she was exposed to the experience anyways.

Since the weather was so cold, it pretty much forced us indoors for the remainder of our stay. To end our Saturday, Rob took Oia swimming in the hotel pool and she had a ball, squealing and splashing about the entire time.

Our family needed this brief escape from within the bubble of everyday life. It felt so refreshing to get away, even if it was only for two and a half days. A room with an ocean view and quality time has a family was just the medicine we needed.

The Littlest Teaster Update

2011-03-24T18:29:00.001-07:00

Not sure how cohesive this post will read as the last 24 hrs have been full of trial, to say the least. The emotional roller coaster we seem to not be able to step off of has once again taken us for an unwelcome ride with quick twists and turns through some spooky, dark tunnel; a ride that feels all too familiar. Thankfully, we saw some light today... I'll try and explain.

Yesterday was my 22w ultrasound. There's no denying it, I was nervous. Immediately, we learned of our baby's gender and the tech began scanning baby, head to toe. All seemed fine. What felt like an hour later, we were still in ultrasound - and Rob and I silently noticed that there seemed to be a great focus on our baby's heart. We thought nothing much of it as the heart, of course, is a rather important organ to scan. Still, I laid patiently with all eyes glued to the screen. Finally, the scan was complete and we were walked to another room for my prenatal appt which immediately followed. We waited for our doctor to enter the room with eager anticipation as we smiled ear to ear with the joy of having another daughter.

Unfortunately though, joy can melt into anger and fear in just a moments time. The deep breath our doctor took as she closed our room's door behind her was that moment; joy left and fear entered. She spared us no more wait... our baby was diagnosed with Situs Inversus. In English, internal organs are positioned on the opposite side of the body. The primary concern was of the heart and stomach location/positioning with a questionable abnormal outflow tract of the heart. I crumbled. Thankfully, I have one helluva' strong husband who was able to hold composure long enough to ask some important questions to which there were no clear answers for. The words surgery, mortality, and abnormal bounced around that room and erased every ounce of my faith. We were referred to UVa for a fetal echo and high risk ultrasound, which was worked out for this morning at 8 am.

Waiting through the night for this mornings appointments made for the second worst night of my life - the wonder, the anger, the why's, and the unknowns are more than enough to drown the strongest of spirits. Shame on us for having the faith that this time things would be different and perhaps easier. Really, what possible lessons are there left for us to learn? The odds of having not one, but TWO children with needs...? Why, why, WHY?

Before we got out of bed this morning, we had our last good cry. Then, we made a plan to put on our big kid pants and focus by going into "what now?" mode. Anger faded away slowly and we just decided to figure this mess out and do for our littlest daughter as we have for our oldest... whatever it takes.

I had 3 more ultrasounds today, one of which was the echo. Sparing you the details, here is the conclusion of our appointments:

~Baby does not have Situs Inversus. Her abdominal organs are in the correct location, including stomach, and all are formed correctly, measure as they should, and appear to be functioning correctly as well.

~Baby does have Mesocardia. Simply put, her heart is positioned more midline than on the left. Also, it is rotated a bit but the beauty in all this is that as best as ultrasound can tell, it is functioning properly. Proper in/outflow, no abnormalities, all chambers, valves, ventricles, and atria are present and working. Good heart, wrong spot.

~Baby's measurements are precise with 22w. This is a good indication of what the heart is doing for the rest of her body; correctly supplying blood.

~All of this info comes from the images of ultrasound. At 22w, some areas are still hard to decipher. As baby grows, we will continue to learn more of this puzzle but for now our doctors tell us not to worry and feel confident that this baby will not need surgical intervention after birth and should live a very normal life.

(Sigh) What do we do now? I will be followed by high risk with my next ultrasound in a month. I will see my regular OB in two weeks. Rob and I have made the decision to deliver this angel at UVa instead of the private hospital that we once were. In the event that complication arises at delivery, we will have the safety net of a NICU through UVa. Until then, we put one foot in front of the other and love on the spunky, little girl we have to hold now. And breathe. Just breathe.

Snip, Snip

2011-03-20T18:51:00.000-07:00

A hair cut for Miss Oia has been on the to-do list for a while now. Her ends were beginning to tangle and even up in a ponytail, her hair was wrapping around her neck which made for a sticky mess by the end of the day. So, we tried a new local kids salon in hopes of making the experience a fun one for her. To say she had "fun" may be an exaggeration but she was her usual self; patient and tolerant, and for the most part, very cooperative the entire time.

Have you ever seen such long hair on a 3 year old?

"Dear God, do they really think this is the look for me?"

Guess she decided to catch up on a few texts while she had the time...

Mirror, Mirror, on the wall...

After saying good-bye to 3 inches, Oia's hair was back up in her signature ponytail and then sprinkled with fairy dust. She then got to put a lock of her hair into a magic machine where it turned her hair into a special surprise; a new ring. A sweet surprise for a sweet girl.

Haircut for the Princess: Check.

Happiness is...

2011-03-17T17:13:00.000-07:00

enjoying your own cone of green custard on St. Patrick's Day!

Things To Look Forward To

2011-03-13T06:43:00.000-07:00

First up, a new brace is in order for little Miss. It's that time again; her foot grows tight inside that molded piece of plastic that was casted for her nearly 6 months ago. We always know when it's time. Her foot becomes reddish-purple and puffy and the fit is off and tight.

Earlier this week, Oia attended a clinic/informative workshop held at her prosthetist's office for local therapists to learn more about KiddieGAIT bracing. She was invited to come as a model for the event where she demo'd one of these braces to test whether this style would prove beneficial to her mobility needs. In a room full of strangers, she walked back and forth between Rob and I as therapists and other professionals observed her stride and gait while wearing the KiddieGAIT. We all liked what we saw - I even heard the lead gentlemen say "Wow, I have goosebumps" when he saw her first steps in the new brace. We will be getting one very soon and I'm so very, very excited and thankful to have tested one prior. More to come on how the brace is different and more beneficial once we actually have it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Changes are coming our way in the speech department. Some days I feel like letting nature take control by just allowing Oia's speech to progress naturally, with not much pushing. Other times, I feel like gathering all the interventions I can to help facilitate her language and all the potential she brings to the table. Perhaps it's the baby growing inside me but I'm feeling the need to do all that I can NOW before life gets crazy again. So, I scheduled Oia for a speech eval at Kluge in hopes to begin ST services there very soon. Preschool ST is just not going to be enough and my thoughts race to summer break when we have a major lag in all therapy services. In a nutshell, the eval offered no surprises although I have to admit that actually seeing and reading a four page speech and language pathology report of what your child can't do is still quite painful. Knowing is one thing but reading it in stark black and white is a totally different story.

Here is what the eval measured:
Expressive language scores: Standard score 59
Receptive language scores: Standard score 76
Average standard scores are 85-115, with a score of 100 being the mean. Oia's performance on the receptive language portion is more than one and a half standard deviations below her peers. Her performance on the expressive language portion is more than two and a half standard deviations below her peers. Ouch.

I remind myself that this was an assessment of just one hour, conducted by a complete stranger, with a three year old crammed in a 10x10 room who had little interest in the activities that were expected of her. Assessments and evals can only measure so much and Oia is more than measurable statistics, although I realize we have a lot to focus on. We move forward with private ST 1x/wk for the remainder of the school year, beginnning on the 17th, then 2x/wk during summer break. I have high hopes for her progress.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cerebral Palsy of Virginia is hosting their 18th annual 5K on March 26th which we are excited to be participating in with Oia. If anyone would like to contribute to CP of Virginia via Team Teaster, it would be greatly appreciated by the deserving individuals who rely on these funds to help alleviate medical and financial burdens they face living with CP.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And last but not least, I'm officially half way there - nearly 21 weeks pregnant. I'm feeling much, much better and getting much, much larger. The 22 week ultrasound is scheduled for March 23. We've decided to take a peek this time around at the gender of this little being but will savor the "surprise" until birth day. I'm praying like mad that all appears normal on the ultrasound although I know full and well that that is only half of the picture. I shall keep you posted.

Dear Cerebral Palsy

2011-03-09T07:06:00.000-08:00

March is your month. Cerebral Palsy Awareness Month. During this month, most state your facts and statistics to increase one’s knowledge of who you are and what you look like. Some may choose to bring to light your darker side, the hardship you cause and the pain you inflict on innocent bodies while others may choose to spread what a fortunate circumstance you have been to the lives of those who know you personally. I choose to take the bad with the good because without one there is not the other. No matter how I view you on a daily basis, no matter how angry I am to see your hindering ways within my daughter, or how joyful I am of her triumphs over you, I am very aware of you Cerebral Palsy…. more aware of you today than I ever hoped to be.

It’s been 3 years now since you felt the need to make yourself known and grace my innocent daughter with your life long presence. I’ll hand it to you - you had us sitting on rock bottom after our baby’s diagnosis but only for little awhile as this small family of three was bound and determined to not be beaten. More importantly, the child you chose to inflict with global delays, right-sided weakness and spastic muscles has been thriving and kicking your butt ever since she met you.

Thanks to you, it’s taken a team of professionals to help Rob and I raise this girl of ours. We could have never begun this unforeseen journey on our own. We count this as part of your good, just one of the many blessings in our lives. Because of you, we have met the most sincere and compassionate therapists, doctors, teachers and everyday strangers who go out of their way to make life as normal as possible for our daughter. She has an additional 5 doctors over the child who lives a life free of you, not to mention the 6 therapists that manipulate and train her mind and body to conquer you. We are and will be forever indebted to them all.

Cerebral Palsy, because you have stolen some of the simple pleasures from Rob and I that come along with raising a typical child, you have in turn given us intangible things that are far more valuable and greater than us. Among those things, we learned very quickly to document life and appreciate movement. I will forever hold vivid memories of the first time my daughter was able to look at me clearly with both eyes and smile from behind the teeniest pair of pink glasses. I recall the first time she rolled from front to back and who was with me at the time it happened. I remember her first unassisted sit with Rob seated behind her ready to catch her fall. I remember her promising first reaches for an object with her right hand during one of her first OT sessions at just 7 months old. I’ll never forget her first claps that were captured in Christmas pictures just months after her first birthday. I remember the nerve-racking ride home from her eye surgery and witnessing the first time she looked to her right with both eyes finally aligned. I can still see her first belly creeps across the floor and her first haphazard steps with her walker when I stop to remember and I’ll never, ever forget her very first independent steps. Every goal and milestone met will be etched in my memory so long as I live as each one had to be taught and practiced over and over again until successfully mastered. In this house, dancing and excessive cheering is not reserved for just sporting events and birthday parties but rather for the tiny miracles that have happen within our own living room.

Cerebral Palsy, you have also taught us to seek the silver lining in every situation. You play an unfair game with the muscles in her little body, including those that control her eyes. However, those glasses that she so sweetly wears on her face are there because she can see, not because she can’t. The orthotic on her right foot that seems cumbersome at times and often limiting is only a daily reminder that we have a daughter who has been blessed with the gift of mobility. Her speech delays have taught us to listen with our eyes and hearts as her actions often speak louder than her utterances and unclear words. The perspective you have given us of this life will always lead us to the silver linings, no matter what.

Because of your unexpected lessons, you have bonded this tiny family with love and faith and have provided us with the indescribable feeling of pure and absolute joy. Some days I dislike you and I feel weakened by you, but most days you fill my eyes with tears of happiness and pride for the little girl you can’t slow down. Your challenging ways have made me a stronger woman, a better mother, and a more open-minded individual. You have shaped the character of my child just so, making her a tender yet hard working warrior who always wears a smile despite your presence. I know you’re here to stay, but don’t get too excited. My daughter has you, Cerebral Palsy - but I assure you, you do not have her.

Sincerely,

Oia's Mommy
One very proud CP momma

Music to Our Ears

2011-02-27T17:38:00.000-08:00

I'm not sure at what age a kiddo develops the ability to push air from their mouth, or blow, although I know it's fairly early. I know this ability falls under the umbrella of oral-motor control and speech so I've never been alarmed that Oia couldn't do such a thing as blow bubbles, birthday candles, etc. However, with enough encouragement, practice and musical instruments scattered about this house, she has finally mastered the skill well enough to play her new harmonica... and the sound is far from annoying as it's the sound of more progress. This girl is proud of her every squeak and so are we.

SuperNanny Knows

2011-02-20T18:02:00.000-08:00

We have begun making a few changes to Oia's room in preparation for what's to come this summer. Until just one week ago, Oia was still sleeping in a crib. Since we were fearful of her standing inside it and perhaps flopping over the rails, we literally just placed her mattress inside the crib frame on the floor. Essentially, the crib acted as the ultimate toddler cage; she couldn't get out and she never even tried. Bedtime and naptime in the crib was a piece of cake and I hated to fix what wasn't broken but the fact of the matter is that Oia was getting too long for her crib and the crib will soon have a new occupant.

Onto the next chapter... a "big girl" twin bed accompanied by what I knew would happen; a fight at every bedtime.

Oia will not, I repeat WILL NOT, fall asleep in her new bed without one of us laying in bed with her. I understand we've rocked her world by taking away something she felt comfortable in so I'll accommodate her for now. However, she has even begun waking in the middle of the night, crying out for us, and walking down the hall to our room. Again, same situation. She will not fall back asleep unless I lay with her once she's placed back in her bed. This behavior is new for Oia. She's a great, sleep-through-the-night sleeper.

You can call it lack of patience, I prefer to call it structure, but I'm not willing to deal with the middle of the night wakings by laying with her until she falls back asleep. I need sleep too, in my own bed. So, I resorted to the SuperNanny tactic, you've at least all heard of the show.

Here's the scenario:
Kid wakes and cries and crawls out of bed.
Parent picks up kid, puts kid back in bed, walks out.
Repeat. Over and over and over again until kid gives up and parent wins, no matter how long it takes.

Sounds easy but I assure you it's everything but that. That was the scene at our house Friday night. I felt ready to tackle the beast at 3:27am. Oia woke, sat up in bed and cried. I came in, laid her back down, covered her up, walk out. She cried, sat up again, crawled out of bed, I entered her room and put her back in bed, then walked out. It seems brutal and after 30 minutes of this dance, I was determined to not give in but it felt like no end was in sight. Oia gave it her best shot but after all the crying and fighting to get out of bed, she worked herself into extreme exhaustion and just couldn't do it any longer. Her surrender came exactly one whole hour later after a minimum of 35-40 attempts to escape her bed.

I felt victorious but I knew the true test would be the following night, if she was to wake up again. And she did. She sat up and cried but never tried to get out of bed, just waited on me to enter the room. This happened just 3 times in a row which took only about 2 minutes as opposed to the previous night's ordeal of the one grueling hour.

Around 7:30 or so that morning, I woke to the sound of her shuffling down the hallway into our room where she headed straight for my side of the bed wearing a big smile on her face. Thank goodness she still loves me.

I'm calling it success and sweet dreams for all. No SuperNanny needed here (at least yet anyways!)

Pictures of Oia's bedroom re-do coming soon.

Happiness is...

2011-02-14T06:00:00.000-08:00

...believe it or not... when you walk your child to her classroom, help her put away her coat and backpack and turn in her folder, smooch her forehead and wish her a great morning, then she motions towards the door for you to leave.

It's called progress, people. My girl is just growing up.

The Second Time

2011-02-08T11:15:00.000-08:00

For the most part, I'm a girl who loves being pregnant. I had a fabulous first pregnancy with Oia. I had not a day of morning sickness, but a little fatigue which I attribute to working full time, not to pregnancy. I continued my workout routine with a trainer well into the sixth month and still remained very active until the day I delivered. I was an easy patient. Boring really, as everything progressed perfectly. My days were easy and full of giddy anticipation as we spent our free time trying to imagine who was growing inside of me. The gender was a mystery as my belly grew and grew and after a smooth, textbook delivery 40 weeks and 5 days later, our sweet Oia made her grand entrance into a peacefully quiet delivery room. It was the best nine months of my life.

The subsequent 9 months, however, were not. We felt brutally thrusted into a foreign world where we were expected to live forever. We landed in a world laced with scary vocabulary, fear, dread, anger, despair, tears and broken-hearts. I blame those subsequent 9 months for the fears and anxiety that have robbed me of the sheer bliss I'd like to be feeling again during this pregnancy. But for me, pregnancy will never be the same.

Am I thankful to be expecting a second child? You bet I am. I'm over the moon excited. But, the diagnosis of Cerebral Palsy secondary to Schizencephaly that will forever be a part of my daughter, and therefore this family, has stolen my innocence and permanently changed my naive ways. I feel vulnerable to what may be waiting for us around the corner... a healthy baby or another angel with needs?

Only time will tell and I'll count it as a blessing either way but the wonder never leaves me. For the sake of the child, every parent remains hopeful for optimal health and well-being and I'm certainly no exception.

This time pregnancy has been wildly different than my pregnancy with Oia, not only emotionally but physically as well. Oddly though, this is where I find some peace and comfort. Today, I am 16 weeks pregnant. There has not been a day in the last 16 weeks that I have not had at least one pregnancy symptom or another. I've prayed for pregnancy symptoms this time around as a sign, a way to assure me that this time things would be different. Crazy, I know, but it is what it is.

That old saying Be careful what you wish for holds true here. My face is a wreck, my back hurts, headaches frequent me and all patience have left me. I'm still so fatigued, unmotivated and my husband would chime in that I'm a bit irritable aka hard-to-live-with, and for the first 12 weeks I was on the edge of nausea around the clock while eating us all out of house and home. But through it all, it is what I asked for. It's become my peace, my sign, and I'll take it. It's not a guarantee by any means, but it is an answered prayer thus far.

Photo of Oia on her birth day, only a couple hours old. Since then, we've been forever changed.

The House Helper

2011-01-28T12:26:00.000-08:00

Children are sponges. Most are observant learners who love to mimic adult behaviors. In this house, there are always two little eyes recording my every move. Oia can't always repeat what I say but she certainly can repeat my actions. She feels the need to be my constant shadow. Rob calls her "Mini-Mo". She follows, watches, and helps me with whatever I'm doing. Helping is truly what makes her most happy. Although this leaves me with little to no break in my day, I know she is learning just by being with me. I know this because she....

wears my oven mitt when baking in her kitchen.

wipes up her own messes.

carries her folded clothes to her dresser.

puts away dishes.

even puts dishes in the sink.

disciplines the dog, even when he's not doing anything wrong.

sweeps and vacuums.

The other day while I was doing dishes, I turned to look behind me and noticed a couple of things. 1) Oia's cup was sideways on the floor, 2) juice was spilled on the rug and 3) Oia who had retrieved her (broken) Dyson to vacuum up the spill.

I love it. We never take for granted that she is able to comprehend a situation, associate a spill with a device that is used for cleaning, and then have the physical capabilities to do such a "chore', all on her own will. While witnessing many of Oia's behaviors and movements, Rob and I still look to one another and say... "Did you ever imagine her doing this?" We know each others answer. We just shake our heads and smile.

And I'll say it again - we never take these developmentally appropriate behaviors for granted. Ever.

She Kissed Me

2011-01-19T11:22:00.000-08:00

Our bedtime routine is... well, it's just that, routine and predictable. Rob bathes Oia, stretches her, puts her jammies on, and then we cuddle on the couch for a few swigs of milk, then she gives Rob a hug and signs "I love you". From there, I carry her upstairs to her room while we (okay, I) say aloud "Thank you, Lord, for another wonderful day" as our evening prayer together and then I steal the last of the days kisses before placing her in her bed. Moments later, she's dreaming. It's as easy as that.

Last night was slightly different. Once I walked into Oia's room, while carrying her in my arms, I was taken back by two skinny arms that wrapped around my neck and two little lips pressed tightly against my cheek. Heart, be still. This was my very first kiss from Oia.

Let me rephrase that. My very first kiss from Oia that I didn't have to ask for.

Oia can show affection by hugging and kissing and signing "I love you". How lucky we are. But, she has yet to show affection towards anyone without being asked or prompted to do so. Is the lack of voluntarily showing affection a part of being developmentally delayed? I don't know.

All I do know is that if you ask Oia, can I have a kiss?, you'll get the best sloppy kiss ever, maybe even a couple of them.

Say Oia, give me a hug! and you'll get the tightest but sweetest hug ever, with two arms, not just one.

I'll say Oia, time to go to bed now... what would you like to tell Daddy? and she'll instantly cross her arms over her chest which is our sign for "I love you".

It's affection no matter how you slice it. Her hugs and kisses and I love you's mean more to us than anything. But, the kiss that came out of nowhere because she chose to kiss her mommy, not because I asked her to, put a dose of per joy in my heart once again. Oh, it felt so good. I never even realized how I longed for such a thing until it was over.

And truth be told, last night was one of the best nights of sleep I've had in a long time.

Those Blue Eyes

2011-01-19T06:07:00.000-08:00

Yesterday was a full day. We started off the day with an awesome hour of PT and then returned home to pick up Rob for our venture to northern Va. It was Oia's 6 month follow-up eye appointment with Dr. P, but a little later than 6 months because our recent Botox appointment bumped this eye exam to the back burner.

Anyhow, our concern this visit (and there's always a concern) was the new inward turning of her left eye. Let me remind you that almost one year ago, Oia had surgery on her right eye for the same reason. Left eye one year ago was straight and dominant and Oia preferred to use only the left eye. Her brain was beginning to ignore messages from her right eye because left eye was so dominant, thus making right eye drift inward. We were told around that time that her right eye had very little visual function and that surgery was more for cosmetic reasons than for function. However, Rob and I tried to take that info with a grain of salt because we believed Oia could see out of her right eye better than any eye exam could show. So, after surgery we tackled patching and Atropine drops all in a desperate effort to wake up or save whatever little visual function remained in her right eye.

And thank God we did.

Now, the fact that her left eye, the eye she has always relied on, is intermittently turning inward means that Oia's RIGHT eye is working, seeing, and doing, thus meaning that she is no longer reliant on only one eye. Dr. P said it can be very alarming to parents when the strong eye begins to suddenly change and drift inward from time to time, but this to an ophthalmologist is a good sign. It's a sign of a weak eye growing strong enough to pull the other eye in. A year later, she is using and seeing from BOTH eyes! Amen.

Oia can use both eyes together, as a pair. Just not all the time. The crossing is slight. It is inconsistent. But, it is happening and right now we're kind of happy about it. Sure, in a perfect world, we want those blue eyes of hers to see as a pair, to move together all the time. Heck, in a perfect world, my baby would have never had to get glasses in the first place. But, 3 years later, Oia's eyes are working as best as they can. Her prescription is steady with no change, another good thing. Just as we have to help her body understand how to use her muscles to move appropriately, we too have to do the same with her eye muscles. It's just one of those CP things.

And so, we continue the use of Atropine and patching. For how long.... we'll just take it one day at a time. That seems to be working so far and we are so very thankful. Thankful for two tiny blue eyes that allow our girl to see this crazy, yet beautiful world we live in.

Update Hodge Podge

2011-01-14T18:08:00.000-08:00

So, the word is out. This family is indeed growing. I'm nearing week 13 with a due date set for July 26th. This pregnancy has proven to be wildly different than my pregnancy with Oia. It's been physically and emotionally challenging but I'm able to manage one day at a time with the support of one patient husband and an extra push from a little girl who keeps her mommy moving.
__________

It's been a little over a month since Oia's first round of Botox injections to her right calf. Immediate results. Positive results. Trouble is the results were optimal for only about 3 weeks, foot almost flat and calf relaxed and easy to stretch. Ankle could be effortlessly stretched to neutral, or 90 degrees. It was 3 weeks of a good thing then with each passing day after that, Oia grew tighter and tighter until she ended up back to her pre-Botox level. Actually, the jury is still out if she is even tighter than pre-Botox. She is growing and bearing the majority of her weight on her left side which only invites tightness, therefor short calf muscles, and all sorts of asymmetrical issues. Oia hasn't even had her follow-up appointment with her doctor yet, who now won't even see what gains she did receive during the optimal 3 week period. I'm a little frustrated by the short lived results. It was a bit of a tease. We'll see what her doctor suggests at her next visit at the end of this month. I'm pretty open to hearing what options we have at this point (night splints, surgery, etc) but I'm pretty much set on not repeating Botox at this time. There are still too many unknowns in the world of Botox for my mommy heart to rest easy and for what.... just 3 weeks of a good stretch? Much to consider.
__________

I recently had a meeting with Oia's preschool speech therapist. As you know, Oia's language delay is significant. Current assessments show Oia's expressive language skills are approximately at the 20 month level, vocabulary of less than 50 words. Her ST also bounced the term Apraxia my way as something to think about. Clearly, Oia has enough stacked against her making language so difficult. For the longest time though, Rob and I have felt like Oia was "right there" and at any moment great words were on their way out of her sweet little mouth, which is why we've drug our feet on getting her any form of assistive technology. I feared AT would be a crutch. EI therapists had given her picture cards but the girl was so uninterested in them and frankly I thought they were a joke too. I realize these work for many people and have for many years but at the time, they were not right for us. Rob and I have had many discussions about getting her an iPad and thankfully, her ST has located one for us to use as a loaner. It will have several apps to explore and I have hope that this will be an outlet for Oia and a great way to help facilitate more verbal language. In a perfect world, we should be getting the loaner next week. Oia will be beside herself to have a computer that she is actually allowed to play on. My laptop is generally off limits and it kills her.
__________

Tuesday we head to northern VA for another ophthamology appointment. This appointment is just the usual 6 month check-up but Rob and I have question as to whether or not Oia's left eye is beginning to cross, or look inward, more than usual. It's always been the straight eye. Could it be that it's time for left eye to have surgery now? (sigh) We shall see.

Happiness is...

2011-01-08T19:10:00.000-08:00

knowing that you're...

about to be...

a BIG SISTER!!

The Dentist

2011-01-07T18:28:00.000-08:00

My little "big" girl had her first dental appointment today. I was a bit apprehensive going into the appointment because 1) Oia hates to lay down at doctor's appointments and 2) she hates when doctors and nurses touch or mess with her head. Hates translates to a red face and a sad, pouty, bottom lip, verge of tears.

With some sweet talk and a little encouragement, she bravely reclined back into the chair. She opened her mouth when she was asked to and allowed the dentist to take a look around her mouth with his mirror. So far, so good. He brushed her teeth and then applied a vitamin solution. Again, so far, so good. Then came the spit sucker and from there it was downhill. And I can't blame her.... dentist gave no warning that he was about to use such a thing. The noise and the surprise and even the feel of the sucker was just enough to FREAK her out. At that point, she was crying and fighting to get up and get the heck outta there.

First dental appointment over. Teeth look good. No cavities. No worries of malocclusion and no more spit sucker for another 6 months.

CME Payoff

2011-01-06T19:12:00.000-08:00

Oia has been practicing CME for almost a year and a half. For us, it's made all the difference. It works for us. A big focus as always been learning to balance and shift weight, and control only the muscles required to step up and down a small step WITHOUT support or assistance. There are moments when Oia steps over a toy, or the rarer moments when she masters a step up or down without a handhold or handrail and I exclaim to all who will listen, "She's been practicing that in CME!" To see her do something in the 'real world' that we have practiced over and over and over again in therapy is.... well, nothing really quite describes it.

One of those glorious moments happened during our recent visit to my parents house. Below is one of the step obstacles that Oia practices each session. This specific obstacle isn't set up with CME equipment but the methodology is basically the same. Note she leads (steps up) with her weaker leg so that she lands (steps down) on her stronger leg.

And now for the payoff... and FYI, this is one month post Botox and sans AFO.

How awesome is THAT?!

Holiday Review '10

2011-01-06T17:47:00.000-08:00

Happy New Year, everyone! Long time, no blog, but I'm back...

We woke Christmas morning from our own beds, in our own quiet house, and sat in front of our own tree to unwrap a few of our own presents. Previous years, we traveled to Ohio to spend Christmas Day but this year we opted to be at home, just the three of us, and it was lovely.

Plans were made to travel to Ohio the day after Christmas but with the predicted "winter weather" headed this way late Christmas Day, we chose to leave ahead of the storm later Christmas afternoon. Last year's traveling nightmare is still fresh on our minds and there was no way we would chance a repeat version of those hellish 30 hours. We made a smart choice to leave early, we saw not one snowflake all the way.

First leg of the trip was spent with Rob's family, just north of the Cincinnati area. Oia had a grand time with her Mamaw (Rob's mother), not to mention the extra special attention from her cousins Callie and Colton. Oia also spent some time with aunts, uncles, and our long time friends, The Tack family, who were in the area from Wisconsin. Good times.

Oia snuggles with Mamaw and cousin Colton

Oia with Mamaw and cousins Callie and Colton

Next and last leg of the trip was to my family's neck of the woods, about 2 more hours north. There, we stayed with my parents and visited with lots of extended family; aunts, uncles, cousins, and my grandmother who Oia refers to as GG. Visits with her are always a highlight of our stay. Rob spend many hours of quality time helping my dad in his workshop. The two were busy building a dresser. On New Years Day, we celebrated with my Uncle Paul as he wed his love at precisely 1:11 in the afternoon.

Oia and cousin Dani enjoying a cheesy snack

Oia with her Grandma (my mother), aka NeNe, trying out her new raincoat and matching umbrella

GG lets Oia play with her wallet, one of Oia's favorite things to do

These are all memories to treasure, especially since visits like this happen maybe twice a year. We finally returned late Monday night. Back to my beloved routine.

O is for Oia

2010-12-22T19:17:00.000-08:00

I struggle more often than I care to admit with the fact that my 3 year old has a significant expressive language delay, a delay equivalent of someone a third her age. Some days it never gets me down (okay, I'm lying) but too often it's on my mind and the older she gets the heavier it feels. Being around a toddler Oia's age who talks in sentences, tells complete stories, and spouts off random silly thoughts and questions leaves my heart a little achy. Aren't all parents supposed to be able to die laughing because of the darndest thing their child just said? I still remain hopeful for that day.

Despite the language delay, I never let myself underestimate Oia's receptive language and the potential she harbors. It could be an easy thing to do but I don't dare go there. Oia won't let me. Yesterday is an example of that.

After PT, we ran an errand to a local print shop to print a few photos. Oia was in her stroller as we waited at the counter for our order to print. The view from a stroller in front of a tall counter, as one can image, is less than appealing. Oia was ready to go as her patience were nearing the end. As I'm standing at the counter trying to be patient myself, I hear Oia below me saying her name repeatedly and with conviction, each name getting louder than the last. She grabs my attention with "Oia, Oia, Oiiaaaaa..." and as I look down I realize that all the while she is not only saying her name but frantically pointing to a letter O that she spotted within the sign that hung level to her sweet little face on the side of the checkout counter.

"Yes, Oia, that is an O for Oia! You do have an O in your name!"

And so those are the rare, beautiful moments I live for... a mere 3 seconds where Oia shows me a bit more of who she is and what she knows. I just love this girl, with or without the ability to speak many words, I simply love her.

In Defense of a Thoughtless Comment

2010-12-15T11:56:00.000-08:00

I was recently on Facebook when a friend messaged me. This friend was near and dear to me in college, but as life often does, it took ahold of us and pulled us in entirely different directions. Sadly, at this point in our lives, our only communication is via Facebook. We began our chat and one of the first things she asked me was if I was still teaching or staying at home. Anyone who really knows me, knows that I stay home now and why so the question made me a little curious. Clearly, she did not know a thing about Oia (though I'm sure I once mentioned our situation in an email long ago).

Anyways, I told her I spend my days at home caring for Oia and have been able to do so since shortly after her diagnosis and her reply was "I'm sorry". I feel like that is the typical, safe thing to say when one doesn't know what else to offer. I hate hearing "I'm sorry". I dove in and asked her if she even knew about Oia and she apologized for not knowing. That's when I told her Oia has cerebral palsy. As I've heard a thousand times before, she said something to the effect of how God knew we would be the perfect parents for this girl and how lucky she was to have us but I quickly assured her that Rob and I were the lucky ones in this situation.

That must have been all of the topic she could handle because what she messaged next shocked me.... and kinda hurt at the same time.

Completely changing the subject, she says "On to a more positive note...." at which time she turned the topic into something insignificant regarding music.

No curious questions. No inquires about progress, Oia's current health, etc. No nothing. Just changed the subject, and in doing so left me feeling no colder then than I do on this 20 degree winter day in Virginia.

I'm just like any other mom. I want to talk about my kid too. Although Oia's different by medical definition, she is something worth talking about. She is not a taboo subject that needs changing. She is the most "positive note" I have to share with anyone. Who else can speak very little yet has so eloquently communicated and taught me some of the most beautiful lessons I'll ever learn?

There's no need to feel sorry. There's no need to change the subject. Next time, have a heart, show some compassion, and ask about my girl. She works too hard to keep her triumphs a secret. You'd be amazed and you just might even leave our conversation on a more "positive note".

Don't Be Fooled

2010-12-09T06:45:00.000-08:00

A while back, Oia's school asked if I would be willing to sign a consent form to have my daughter evaluated by the their vision specialist. (Not sure if "vision specialist" is the correct term but I'm going with it.) I never deny such things so I signed. I figure, the more supportive hands and watchful eyes on my daughter at this young, pliable age, the better.

Yesterday this specialist phoned to set up a mutual time for us to meet. She stated she had some questions she'd like me to answer regarding Oia's vision. We met this morning after I walked Oia to her class. I learned at this time she had already been working with Oia for 3 weeks. I would've liked to have known that before now but, whatever. I answered a few typical questions like How would you describe your daughter? Does she wear her glasses all the time? Is she on any medications? How well does her vision serve her in new places? Is she sensitive to light? How does she explore new objects; orally, tactically, visually, etc? and so on and so forth.

After some discussion, the specialist shared with me that according to her evaluations, Oia sees quite well but I've always believed this. As far as all can tell, her vision does not interfere with her level of function within her environment. To read of her vision history and diagnosis, it's really quite amazing. When asked by the specialist, Oia correctly pointed to near and far objects. Distance objects were seen looking out a window and near objects were tiny thumbnail sized pictures in print. She appears to see colors appropriately, correctly identifying red, yellow, blue and green. Her depth perception is on target. She does not over or under reach for objects and she lifts her little legs to the correct height when navigating steps. Don't be fooled by those little, thick glasses... this girl can see. If there is ever a stumble, it's due to physical challenges, not vision.

In addition to PT, OT and ST during school hours, Oia will also spend some time along side this vision specialist for the remainder of the year. As I understand, the two of them will do tasks together that require great visual focus (threading beads, etc). As Oia grows as a learner, she may require more needs from a vision specialists (special texts, larger fonts, etc) but for now this girl is holding her own.

My only request to all these therapists and specialist who work with my child during school hours... please work with our girl IN the classroom and keep this girl among her peers if and when you can. Getting pulled out of the classroom for one therapy session or another means she is missing out on valuable, educational activities that go on in the classroom. Our social butterfly would appreciate it very much.

Post Botox: One Week

2010-12-07T11:28:00.000-08:00

Oia showed no indication of soreness or pain after the two injections of Botox to her right calf. She carried on as I hoped she would. Doctor told us that changes would begin to be noticeable after a weeks time so we were shocked to notice a huge change in her tone just 24 hours later. To say that her foot was flat, meaning all the way down to the floor would be a stretch, but it was pretty darn close. In fact, while in motion, Oia's right heel is now closer to the ground than her left heel. The relax in her right calf seems nearly miraculous.

Since the injections, it's been safe to allow Oia some time sans AFO. She is no longer walking so high on her right toes which means her ankle is no longer as susceptible to injury. Preventing an ankle injury has always been a constant worry.

So, are we pleased with post-Botox results? Absolutely. And if Oia could talk, I'm sure she'd tell you that too. Too bad the relief is only temporary.

First Botox

2010-11-30T13:55:00.001-08:00

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

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

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

CIT Again?

2010-11-23T19:31:00.000-08:00

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

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

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

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

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

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

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

Happiness is...

2010-11-16T18:56:00.000-08:00

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

Can She Run?

2010-11-11T14:00:00.000-08:00

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

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

Think about that.

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

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

Ortho Appointment: Botox

2010-11-09T11:51:00.000-08:00

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

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

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

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

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

Sleep, Oia, Sleep

2010-11-05T11:11:00.000-07:00

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

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

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

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

Halloween at UVA

2010-10-31T17:56:00.000-07:00

Last year, we experienced Halloween on UVa's Lawn. The Lawn is a beautiful and historic part of UVa's campus that houses honor students and some faculty who generously open their doors to pass out candy to swarms of cleverly disguised kiddos. I'll always remember Halloween at UVa as one of the first places we were eager to take Oia to once she began walking independently, which was around this time last year. Our hearts were swollen with pride as it was a big deal; a celebration of sorts, to witness her finally participate at such an event on her own two feet. We had such a wonderful time there last year that before even leaving, Rob and I told each other we'd be back with Oia again this year. Tonight was the night.

Our ladybug wasn't feeling completely herself, thanks to the sniffles courtesy of preschool, but she still managed to work the crowd for a few pieces of her beloved chocolate. We trick-or-treated our way through a few stops but Oia was perfectly content to people watch by simply poppin' a squat right in the midst of it all to enjoy her chocolatey treats.

After a belly full of chocolate, she decided to mingle a bit. She led the way, Rob and I followed.

We stumbled along many other lady bugs, lots of bumble bees, princesses; you name it, we saw it. But the highlight of our evening was stumbling into a very special gnome along the way. Oia was intrigued and actually shook the little fella's hand as if to say "Nice to meet'cha!" Probably one of the cutest things we've ever seen.

Good times. More memories. What else could we ask for?

PT: Obstacle and Ladder

2010-10-27T12:32:00.000-07:00

Since Oia began therapy at just 7.5 months old, she has been nothing but complacent and willing to do all that has been expected of her. Sure, there have still been tearful moments during more challenging sessions but she'd always, and I mean always, work through the tears. Her will has always amazed me and still does. However, in recent days physical therapy has been a little challenging for all involved, which is myself, PT and of course the star of the show, our Oia.

Challenging for a couple of reasons. Let's state the obvious. Oia's been in therapy pretty much all her life. Right now, an average week generally consists of 5 or more therapy sessions in one form or another, either at school or privately. Is she getting burned out? I don't think so, sessions still involve lots of singing, toys, and any diversion that Oia finds particularly motivating. As her abilities grow, the exercises become more demanding, more challenging, especially so in private CME sessions where she is often pushed past her comfort zone. Combine all the above with a 3 year old and you sometimes get a healthy protest. In recent CME sessions, Oia seems to hit her limit with about 20-30 minutes left. This translates to major attitude, saying "No", crying, bending knees, and refusing to stand. There's nothing to be done at that point. Sessions are pretty much over or let's just say a whole lot less productive.

But, it doesn't really bother me. I don't blame her. The behavior isn't ideal but I am still thankful to be experiencing it. She is in many ways like every other 3 year old, full of opinion and able-bodied enough to perform such drama. It's a phase. This too shall pass and I'm not sweatin' it.

Witness for yourself a very small taste of the Teaster 'tude. This glance is very mild in comparison because this particular day she remained on her feet and still stepped on. This was not her best attempt at the obstacle course as protest throws off her game a bit, however, subsequent trails were better. Note: You'll hear her say "bye-bye" which means she's done and ready to go home. (We've been working on this course since about spring. The goal is for Oia to do this independently.)

Once sessions become "less productive", we have to switch gears, step away from CME exercises and focus on what Oia does like to at least work on whole body strengthening. This ladder followed by a huge tube slide dried up a few tears which means we ended the session on a positive note.

Happy, mad, smiling or cryin'.... I'm still pretty darn proud of this girl.

New AFO, New Shoes

2010-10-18T11:23:00.000-07:00

Waiting on a new AFO in this house, at least for me, is a little like waiting on Christmas Day. You know it's coming and waiting just one more day for something you so badly want (and need) feels like eternity. But finally, on Friday, it was Christmas here yet again. Oia and I picked up her new brace.

She has been in her previous AFO since mid-March, which means she's been in the same pair of tennis shoes that long as well. For the last 7 months, she's wore the same shoes from the time she woke in the morning until she bathed in the evening; only AFO/shoe free time is during nap. Honestly, her shoes may not have held up another day... but I'm not complaining. A lot of miles and hard work goes into wearing out a good pair of tennis shoes!

Obviously a new, larger brace needs new, larger shoes. Ahhh, shoe shopping for Oia. Not my most favorite of times to say the least, considering Oia needs a missized pair of shoes to accommodate the brace which no one has been willing to sell us in the past. Left foot is currently a size 8-8.5 and right foot with AFO is a 9-9.5 WIDE. Previously, we had to buy 2 pairs of shoes; one pair in each size. Then pull one shoe from each pair to make Oia's odd pair. It's wasteful and oh so ever aggravating when the sales clerk offers a minimal discount on the 2nd pair as if to do us a favor, if they even bother to offer a discount at all. But headache and cuss words no more.... thank you NORDSTROM. Nordstrom sold us a missized pair of shoes last weekend without blinking an eye. And, (it gets even better) they offered to order any shoe we needed, regardless of whether or not it was currently on their display, in whatever sizes we needed. My life just got a whole lot easier and Little Miss now has two, DIFFERENT pairs of shoes to wear this winter with her new brace because every girl deserves some variety. She will be either sporting around in pink and gray Saucony tennis shoes or a 'dressier' pair of brown and pink Stride Rite tennies. A choice. A first. This is nice.

One new pair: right insole and tongue removed = the perfect fit. And the velcro strap on this pair didn't need lengthened, another first. I think I heard angels singing at check-out.

New AFO is slightly different than what we've had before. It is a two-part brace, for a lack of better terms, and the hinge functions a bit differently than what we're used to. The hinge is springy and gives Oia's leg more input to flex at the ankle. This gives her a bit of assistance in lifting her foot into dorsiflexion so her foot/toes don't drag as much with each step. It really seems to be helping. Also, we must first insert Oia's foot into a "shell", making sure her heel is all the way down. Then once that is in place, we slide her foot back into the brace itself and strap her in tightly, making sure again that her heel is down and ankle is as close to 90 degrees as possible. The whole purpose of the "shell" (SMO I think it's called) is to give her foot the extra hold it requires to keep her properly positioned in her brace. Kiddos with CP who experience muscle tightness have a tendency to "pop out" of their brace and this extra casing around her foot really keeps her heel down. Her calf muscles and hamstrings are getting tighter as she continues to grow so having her heel down is crucial. One bad thing about the extra layer of plastic though... her feet sweat terribly inside of it.

Brace shown separated, shell inserts back into hinged portion.

Brace as a whole

Oia is usually able to wear each brace anywhere from 6-7 months before outgrowing them and getting recasted for another. New brace will get us through the winter which translates to no more shoe shopping until spring. Yay!

Happiness is...

2010-10-15T11:55:00.000-07:00

...enjoying your first ever cup o' goodness from Starbucks!

Hopeful

2010-10-11T11:09:00.000-07:00

Oia and I made a small venture this morning to our nearest Home Depot. Our mission: paint. After two years of living in this house, our interior walls will finally get the paint they so need. I called in our order before leaving the house so I expected the trip to be quick and uneventful. When we arrived at the paint counter, there was no one available to help us but we were in no rush, just two girls out enjoying our day. As we waited for someone to appear, I picked up Oia and placed her on the only stool next to the counter where she sat feeling like royalty of the paint department.

Our wait was short as help arrived momentarily. I watched our help round the end of an isle and then proceed behind the paint counter. He greeted me and I greeted him. We had a mutual, unspoken connection once he noticed Oia by my side and within a matter of just seconds, although I knew nothing about this man, I felt great admiration for him.

He asked if he could help me. I told him about my order of paint and he gestured to the bucket on the floor. I then requested 2 more gallons of another color. We smiled at one another and then he gladly began working on our request. I remained at the counter because I wanted to wait and watch this young man work his magic but instantly found myself with glassy eyes and a lump building in my throat. Just like that. I wanted to kick myself for the sudden surge of emotion. I quickly scooped Oia up off her throne and headed a few isles away to gather myself before anyone could notice. While Oia turned every knob on every grill she could put her hands on, I stood trying to comprehend all that I had just saw.

I just saw a man struggling to walk with a crooked and palsied body, knees that rubbed in stride, but a man who still offered to help lift a 5 gallon bucket of paint into my cart.

A man in AFO's, noticeable as his pants lifted ever so slightly as he walked.

A man with eyes obviously misaligned, but who still found it easy to look up and smile at a stranger.

A man with bent, stiff, uncooperative fingers, who managed to slowly but accurately type in my paint order.

A man who softly spoke words that many must struggle to understand, slurred and slow, but a man who didn't resist conversation with me or anyone else who came to the counter.

A man who wore a shiny wedding ring; a man who seemingly found someone who vowed to love him unconditionally.

Today, I saw a man who lightened my heart. Pure and simple. And in the first glimpse of him this morning, I felt so hopeful for my own daughter and for her future. He was more than a man who mixed paint for a living. He was an inspiration.

In the beginning, we wondered if Oia would ever walk or talk. Today we have our answer. But with each ounce of progress and milestone achieved, I still drift and wonder about her future. All moms do. Thoughts of slumber parties, dances, high school, college... Will she be able to drive a car? Will she have a profession? Will she experience true love and be married? Will she grow up happy and proud of who she is? Will she find acceptance in this world? The wonders are endless but the man who happily wore his bright orange apron this morning unknowingly filled my heart with even more hope and assured me that yes, most of this, if not all of this is possible... one just has to want it.

It's funny what inspires us. If I encountered this man just three years ago I would have never left with the same impression and outlook as I did this morning and I certainly would have never had to hide myself while I wiped away hopeful, happy tears from my face. But, lucky am I today because that is exactly what I did. I went to Home Depot to pick up 7 gallons of paint and instead I came home with that and much, much more.

Hippo: Righty Rides

2010-10-09T19:03:00.000-07:00

Another session of hippotherapy... another great morning. B, Oia's therapist, recently added noodles to the barn which Oia really enjoys riding through.

The noodles have several great therapeutic purposes; reaching up/out, grasping, etc. Here is a video of Oia stopped under the noodles to encourage the use of Righty. She is getting by with bonking one of the volunteers on the head with a noodle, simply because she is actively using two hands. (This girl can get by with just about anything as long as Righty is involved.) Notice that once she is turned around facing forward again, she grabs a hold of the handles with both hands, just before B gives her the verbal cue to do so. Awesome.

"She's Smart"

2010-10-09T11:59:00.000-07:00

When Oia's first neurologist diagnosed her has a spastic quadriplegic with cerebral palsy, he in the very same breath advised us to "familiarize ourselves with mental retardation" because he strongly felt this was what we'd be up against. Our girl... mentally retarded, a hole in her brain.

Numb. Words that stung. Still the worst day of my life.

To this day, the words of that less-than-desirable doctor make me tear up every single time I revisit that moment. So why relive the moment?

Because I'm a remember-where-you've-been kind of girl. Because I appreciate the path that lies behind me since after all, that path has brought us to today. And today is good.

Because when your child's preschool teacher informs you that she'd like to move your child into a class of 4 year olds; saying things about your child like "she's smart" and "she's ready for pre-academics" makes it really hard not to remember the once spoken words of that painful moment, but suddenly, they're not so painful anymore for someone else sees the potential we knew she had all along.

We know a girl today who is bright and inquisitive. We know a girl who is identifying colors, learning letters and numbers. She is participating in literacy centers, math centers, and calendar time. She is enjoying recess and PE with her classmates; on her own two feet. She is socializing and her personality is blooming. She is aware. She understands completely. And we never, ever doubted it. Not for one second.

Security

2010-10-04T05:47:00.000-07:00

Rob and I took Oia to the park yesterday. Weather was remarkable and there was no other place we should have been than outside on such a beautiful day. The air was cool so Oia was toddling around in a comfy pair of pants, pink of course, the first time since last winter.

She played and smiled and enjoyed having the both of us there with her. The park was all ours and life was good. Then shortly later, a mom or two arrived with their young children which always has a tendency to set my mind in motion. And yesterday it did. The thoughts come without warning and for reasons that I could never find the right words to explain.

And, suddenly, those cute pink pants seemed to be in the way. And I'll admit... those pants are in no ones way but my own. Those pants cover up the ticket, the pass, the explanation; call it whatever you want, of who we are. They hide an important piece of our story. That little brace that accessorizes every one of Oia's outfits has become my sense of comfort. It answers a lot of questions before they even get asked. Being in public without it, like the pool of course, or when the weather is cooler and it's hidden under pants like yesterday, makes me feel no different most days than a fish without water. That brace is my security.

One may notice the cute glasses that rest on Oia's sweet little nose, or the eye patch that hides behind them, but glasses and patches are not entirely all that uncommon. One may notice the drool that hangs from Oia's chin or even her dampened shirt but she is a toddler after all, and for now that is within the realm of acceptance. Maybe some notice her microcephalic head but doubtful; she's been blessed with a beautiful blond ponytail that catches all the attention, not to mention the most glorious smile you have ever seen. They probably notice her limp or uneven gait but may assume she is a new walker and just tall for her age. They may notice her right arm functions a bit differently, a little slower than the left, but not always. If they're lucky, they'll catch an earful of one really important story known and told with conviction by no other than Little Miss herself, but likely to not understand a word of what she spoke. Then the question of "How old is she?" pops up which seems to fill strange faces with question. Maybe they know something is special about our girl... or maybe they don't. But, I can read their minds... they glance and they wonder.

Security comes in all shapes and sizes. Mine these days seems to come in the form of a molded piece of plastic that wraps around my daughter's right leg. It allows us to be who we are without question or rather it is the answer to the unasked questions. It allows us to be uniquely different. I'm proud of that little brace but no more proud of it than I am of the little girl who wears it. And needless to say, I'm thankful for it; it's functions are many. I just wish the whole world could see it... and all the time.

Picture from 10.2.10 while spending the day at Belvedere Plantation.

PT: Balance and Step Ups

2010-10-01T18:52:00.000-07:00

Oia had 2, one hour PT sessions of CME per week during Early Intervention with our wonderful PT. Since she now receives PT services through her preschool and is no longer in EI, we still chose to continue with private PT sessions but 1x/wk with the same wonderful PT. The once a week private session is where she practices CME, a method of PT that we attribute much of Oia's mobility and strength to.

First 2 videos are exercises that T will sometimes do with Oia. The goal of balancing while in mid air is for Oia to stand tall, potentially reach upward, to provide a decent stretch throughout her hip flexors. The student therapist is trying to encourage Oia to reach up and touch the ceiling (most CP kiddos have some degree of compensation which makes standing tall and straight very difficult, which is the case for Oia). Also, the movement in mid air is dynamic which creates a greater and constant challenge for Oia to maintain subtle weight shifts thus remaining balanced.

Same dynamic movement, different approach with beam:

The boxes below are greatly challenging. Oia must step tall, shift weight forward throughout her trunk and hips, while bending the lead leg knee. Tall order, especially without hand holds. She does fairly well but this CME exercise will be a part of our routine for a long time to come.

Not bad, really. More PT videos of CME coming soon...

Oia's Week

2010-10-01T11:57:00.000-07:00

Our new life, that is post-early intervention, is moving along fairly well. I'm enjoying the change of pace and scenery as therapies are now at the therapy center, instead of at home. I feel a part of society again to actually have a reason to leave the house and drive Oia to school or therapy. The addition of preschool into our lives has only been minimally stressful and I know it will prove to be so instrumental to Oia's social development. Change is good.

I'm sure it goes without saying (as most of you in this boat well know) that any part of our day, scheduled or not, lends itself to countless therapeutic opportunities that we are, and forever will be, mindful of. Daily routines always turn into mini PT, OT or ST focuses however, here are the scheduled portions of Oia's typical week:

M: Preschool, 8-noon, PT and OT during school
T: Open for appointments, or 9:30-11:30 playgroup
W: Preschool, 8-noon, ST during school
R: Preschool, 8-noon, PT and OT during school
F: Private PT at center, 1 hour session of CME
S: Hippotherapy, 30 minute session
S: Open

Oia's a busy girl and life is good; but therapy makes it even better.

Potty Talk

2010-09-23T17:53:00.000-07:00

Parenting is a day by day experience and I find myself just learning the ropes one day at a time. Crossing each bridge as we get to it and moving on to the next; that's just how we do things around here. So, the bridge that is currently stretched out in front of us is one that I'm not thrilled about crossing, mainly because I have NO. CLUE. how to.

Potty Training.

It's been on my mind for a long time now. I just bought Oia size 6 diapers today for the first time since the 5's are getting a little small. As best as I can tell, 6 is the biggest size stores sell, unless you special order these things. That made me panic a little; I felt the pressure to push the issue and really begin tackling this process. I have mentioned in previous posts that Little Miss has in fact christened her mini throne and not once but three times, by the way. However, these pee-pee's on the potty have turned into once in a blue moon ordeals. She knows where the potty is, what it is used for, and she even knows how to flush one all by herself. She thinks it's great fun. She loves to have her own square of toilet paper and she shows me she knows just how to use it.... problem is she doesn't GO while on the pot. Most days, I set her on the pot after she wakes in the morning and after naps which one would think are likely times to pee but Oia doesn't. Sometimes she may even refuse to sit down at all, arching her back and stiffening her whole body. I don't force it. But what in the world does one do??

I talked to Oia's developmental pediatrician about how to potty-train a kiddo with CP. I questioned whether Oia 'feels' the urge or sensation that signals one to use the bathroom. Afterall, this is a muscle related issue and what does CP affect? The muscles. Doctor said this may be an issue but Oia, as any kid typical or not, has to 'learn' these urges and how to control them, it's just something that will take more time for us.

Diapers these days are so technical and wick away any moisture so quickly that kids don't even feel wet. Oia has yet to be bothered by a wet or soiled diaper (which is a sign that one is ready for toilet-training) so I thought perhaps a pair of wet undies may get her attention and alert her to what she just did. So, that was my experiment this evening. I put Oia in a pair of teeny undies for the first time, no diaper, to see how she'd react once she pee'd in them. Mind you, I kept asking her if she wanted to go sit on the potty and go pee pee and she'd say yeah but then once we'd get to the bathroom door she'd say no and smile. Somehow, she's turned this into a game.

Well, after about an hour of wearing her undies, she pee'd. And then laughed HYSTERICALLY as her pee ran down her legs and splashed into a puddle on the floor below her. Massive amount of pee, all over. And who wanted to proceed and carry on about her evening after she just pee'd all over herself; as if nothing just happened? I'll give you one guess.

I'm not convinced she's ready. But maybe she is. Rob says she is but let me mention he's the one who frantically hollered upstairs for me to come down and take care of our daughter after she just soaked herself and the floor. He hates messes and wanted no part of it. Umph. PT says don't force it until Oia and I are both ready, otherwise we'll both just end up frustrated. I just don't know. Quite frankly, I don't mind having a toddler in diapers. I still find myself focusing on physical gains and Lord knows getting her to wear an eyepatch for a total of two hours a day is enough of a chore; potty training aside. It just hasn't made it's way to the top of my priority list yet. Bad Mommy, I guess. What in the world do I do? How in the heck do we cross this bridge? I'm just not sure.

Pictures of Oia were taken today while she was checkin' herself out in her first pair of undies.

Back in the Saddle

2010-09-18T11:54:00.000-07:00

Hippotherapy just resumed from summer break which was during the month of August. So today, we ventured our beautiful 45 minute drive outside of town, for Oia's 30 minutes of therapy time, priced at just over a dollar every minute on horse back, then traveled another 45 minutes back home... and it's worth every minute and penny spent because this girl absolutely loves it (and so do we).

I told Oia last night while I was lying her down in her bed for night-night that once she woke in the morning we were going to see Ms. B, ride Kasper and go "bouncy-bouncy"; which means trot really fast. She smiled a smile that extended way beyond her binki and said Yeah! with wide eyes.

Today's session was spent 'off-road' as Oia rode Kasper out of the barn and down into the woods for a taste of her first trail riding experience. Along the trail were hidden friends which made the ride more interactive. Here is just one of the few friends we stumbled upon along the way...

The unpredictable terrain created more of a challenge for Oia to remain upright and centered on the horse; slopes, uphill, downhill, bumps, logs/water to cross over, and sharper turns. BUT, she rode like a pro.

Like I said... worth every stinkin' penny!

High on Preschool

2010-09-14T11:36:00.000-07:00

I knew Oia would be a bit hesitant with the transition into Preschool. Despite being a social girl, she is still very much a girl who appreciates the company of mommy and/or daddy at all times and we can't blame her. She depends on us for many things; things that are beyond her control. In addition, we sent her during a time of immobility and shaken confidence as a result of her ankle injury. And so it was no surprise that after a couple of clingy and tearful mornings in the first two weeks, my predictions were proven correct. Red face, bottom lip, tears...hard on the both of us. The rocky start led to Oia's teacher suggesting that Oia come an additional day (3 full mornings instead of 2) to help Oia get comfortable with the change and the suggestion has made all the difference; and almost immediately.

Now, as far as I can tell, this girl loves Preschool!

How do I know this about a girl who can not fully communicate with me? Well, she's beaming with an ear to ear smile when I pick her up; not a washed look of relief on her face as in the tearful beginning. At one pick-up, she motioned and reached back for the classroom once we exited and made our way into the hall to leave the building which translates to "I'm not ready to leave yet." She toddles out of the school on her own two feet, carrying her own backpack, proudly saying "bye-bye" to all she passes; not clingy to my neck and being carried out of the building while saying a pathetic "Go, Mommy, Go" as she once did. She jabbers up a storm on the way home as if to tell me all about her morning; while I drive, listen and wished to hell that I knew what she was tell me but still thankful to "hear" all about it. She gets home, one day refusing to take off her backpack and appears to be high on Preschool as she aimlessly 'runs' the length of our house, laughing at herself and playing like tomorrow may never come. Our fridge is filling fast of Oia's Preschool masterpieces that she proudly shows to daddy once he makes his way in the door from a long day at work. Oia's actions are her words and I hear them loud and clear because on school days, she is as happy as I have ever seen her.

And I hope this never changes...

Ortho Update

2010-09-14T11:06:00.000-07:00

Oia's right foot was measured for a compression sock about two weeks ago. The world's-most-expensive-not-covered-by-insurance sock should be ready for us any day. And no, it doesn't come in pink. The sock should alleviate the constant edema she experiences in her right foot and will be worn under her AFO. For as long as we can remember, since early infant days, edema has been a part of our story but hopefully the sock will zap the problem.

Also, we returned today to the same practice that fitted Oia for her sock to seek other options for a better, more functional right AFO. Previous braces have come from elsewhere (KCRC) and our experience with this ortho department has, for the most part, been easy. No complaints. But, like anything else we deal with, we are constantly asking ourselves if the brace we currently have is the best option for Oia thus giving her optimal potential for mobility. Her gait is always a work in progress and constantly changing and we have to make sure that Oia is getting the most out of her current orthotic, which for starters, we know is too small right now. Below are the soles of Oia's shoes; the only pair she wears with AFO. Notice the extreme wear on the inner right sole (which is the shoe pictured on the left). Oia leads with her dominant (left) leg and her weaker (right) leg has minimal dorsiflexion which causes a slight drag of her right foot. The shoes tell all...

Today's new perspective and second opinion on a revised AFO was found beneficial and a refreshing twist on what we current have for her. So, Little Miss was casted today for the new brace and she will be getting a better insole support for her left foot as well. Hopeful that the new brace, in connection with PT exercises, will support her foot better and allow more toe clearance/less drag and better leg/hip alignment. Tall order, I know, but worth aiming for.

Hope to have the new brace by the end of Sept, early October.

Determined

2010-09-09T11:40:00.000-07:00

"There is no chance, no destiny, no fate, that can hinder or control the firm resolve of a determined soul." ~ Ella Wheeler Wilcox

If The Shoe Fits

2010-09-02T06:19:00.000-07:00

I have to give credit to Katy at Bird on the Street for inspiring this post. It pains me to know that others go through the emotional chore of finding shoes for their kiddo in AFO's. For many, looking for these shoes can be a daunting task. I have stood in the middle of a shoe store before, admittedly crying, surrounded by boxes of shoes that just didn't work. It probably didn't help that the particular store was swarming with bounding toddlers who were picking out glitzy sandals and sassy flip flops while I was forced to select from a minimal and rather crappy choice of extra wide, not so cute, bulky, tennis shoes. I've toughen up to the process over the years because I've learned the requirements and tricks of the trade that make a good fit, for us at least. So I've come here to share a few pointers:

1. For starters, we always pick-up and feel a shoe. It must be lightweight and flexible or it's an immediate no-go. And yes, some toddler shoes are just plain too heavy.

2. We always look for a shoe that has a low toe, meaning the less the shoe covers the top of the foot, the better. Since we're buying girly shoes, this is fairly easy for us to find. This one of Oia's shoes and it is an example of what we call a low toe:

3. Another requirement of ours, so far, has been velcro straps. They're practical, quick, and easily adjustable. However, the one obstacle to some straps is that once the shoe is on over the AFO, the straps become too short to wrap over the top of the foot to fully fasten. We always take our shoes to a local shoe repair/alteration shop who beautifully lengthen the straps to make them work. Or, a handy neighbor with a sewing machine can do the trick too. We have had several pairs of Oia's shoes altered this way. This is her current pair with straps lengthened on the right shoe to fit over her AFO:

4. We all know the rip-out-the-insole-of-tennis shoe trick, but do not be afraid to cut out the tongue of a tennis shoe either. We did this to a pair of tennies that Oia wore a year or so ago and it made no difference in the function of the shoe but it did eliminate the bulk thus making for a better fit. Here is that shoe, you'd never know they originally had a tongue:

5. And when the sky parts and the angels sing because you have finally find the perfect fit, do yourself a favor and buy the same shoe in a couple different sizes larger so that perhaps you can save yourself from going through the same search later. I was given this advice some time ago (Thanks, Amy!) and it's been well worth it. The first shoe pictured above is the style of shoe that Oia wore last summer which worked perfectly. We purchased the same style two sizes larger and it will (hopefully) be her shoe for next summer.

6. Spending a lot of money on a pair of shoes is not my idea of fun, not even for myself. However, finding a functional and attractive shoe that fits is priceless in my book, regardless of what the price tag says. We find that Stride Rite shoes are easiest to accommodate, always have wide and extra wide, is the most durable, and I can always find what I need there. Plus, they have never denied me a return or exchange, even months after the purchase and they are always willing to work with me. This is very helpful, particularly when trying #5.

We all learn as we go, just like anything else we do as parents but knowing the above has been beneficial to us. Here's to happy, rather happier, times at the shoe store.

Happiness is...

2010-09-01T05:39:00.000-07:00

when you take your little girl to preschool, help her to her table, watch as she tries to pull out her own chair, then look up at you before sitting down to smile bravely and say "bye-bye".

Bye-Bye, Sweetheart. Have a great day.

Beating the Odds

2010-08-28T04:59:00.000-07:00

In recent years, I've stumbled upon a startling statistic that roughly 80% of all married couples raising a special needs child end in divorce. That's alarming and heartbreaking all at the same time, but not surprising. The constant emotional and financial strain is often too much for one couple to handle. The special needs world provides a continuous and often unwelcoming ride of emotional ups, downs and all arounds and if we're not holding on tight, we're guaranteed to be knocked off.

Although I would never dare say that Rob and I have it easy, I do know we have a lot to be thankful for. We have more than enough to fight for, to celebrate, and to keep alive as long as we can. We have chosen to check our grips daily, hold on tight and tackle this life as a team. We may have our moments but at the end of the day, we are still best friends ready to do it all over again. Two people who have found balance. Love and Oia; our glue.

Somehow, we're doing it. We're beating the odds and making it work; one day at a time. We've accomplished a lot in our 12 1/2 years together and today marks our 6th year of marriage. But who's counting? We're just ready to face whatever comes next... and looking forward to whatever that may be.

Happy Anniversary, Rob. I couldn't make sense of life's craziness without you. You always have a way of making everything just a little bit easier.