Thursday, March 17, 2011
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. 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.
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.
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.
Sincerely,
Oia's Mommy
One very proud CP momma
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.
Sincerely,
Oia's Mommy
One very proud CP momma
Sunday, February 27, 2011
Music to Our Ears
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.
Sunday, February 20, 2011
SuperNanny Knows
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.
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.
Monday, February 14, 2011
Happiness is...
...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.
It's called progress, people. My girl is just growing up.
Tuesday, February 8, 2011
The Second Time
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 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.
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