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

Sunday, March 27, 2011

A Weekend Away

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.

Thursday, March 24, 2011

The Littlest Teaster Update

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.

Sunday, March 20, 2011

Snip, Snip

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.

Thursday, March 17, 2011

Happiness is...

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

Sunday, March 13, 2011

Things To Look Forward To

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.

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.

Wednesday, March 9, 2011

Dear Cerebral Palsy

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 a little while 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 because you have no cure, but don’t get too excited. My daughter has you, Cerebral Palsy - but I assure you, you do not have her.


Oia's Mommy
One very proud CP momma