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

Sunday, December 25, 2011

Christmas Love

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...

Saturday, December 10, 2011

Not This Year

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...

Thursday, December 8, 2011

An Update on Little Sis

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.

Monday, December 5, 2011

Happiness is...

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

Sunday, November 27, 2011

The Wrong Way

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.

Friday, November 18, 2011

An Update

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.

Monday, November 7, 2011

I Hate Gray

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.

Monday, October 31, 2011

Halloween at UVa

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!

Saturday, October 29, 2011

Oia Ramblings

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.

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.

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.

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.

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.

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.

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!)

Wednesday, October 19, 2011

Ohio Visit in Pictures

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:


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.

Thursday, October 13, 2011

No Hands

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.

Wednesday, October 12, 2011

Thursday, September 29, 2011

The New 'Do

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.

Monday, September 26, 2011

Trying Something New

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.

Wednesday, September 21, 2011

Two of a Kind

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.

Friday, September 16, 2011

Jump Around

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.

Friday, September 2, 2011

A New Experience

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

Monday, August 29, 2011

Party On

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.

Saturday, August 27, 2011

Operation Playset

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!

Monday, August 22, 2011


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!

Monday, August 15, 2011

Back to Preschool

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!

Friday, August 12, 2011

What's in a Name?

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?

Tuesday, August 9, 2011

My Sign

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.

Saturday, July 30, 2011


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...

Monday, July 25, 2011

Our Miracle

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.