CeCe had a GRRRRRREAT clinic appointment last Friday. She had another renal/bladder ultrasound to be sure her kidneys and bladder look good and that there isn't any reflux...and she rocked it! If she has one more good one (i.e. no uti or reflux) then she will be OFF the amoxicillin she's been on since birth.
We also saw ortho and he again liked the look of her bones and movement. He gave us a Rx for AFO's (ankle-foot orthotics) little ankle and foot braces to help her learn to stand and walk properly....she is going to have contraptions on from head to toe...literally!
We also got the dates set for our triumphant return to Philly for her 12 month study follow up....prior to going, though, she has to have a sedated MRI and her ENT wants to get down her throat and mess around while she's under too. This all makes me nervous, but neuro needs to see how her decompression surgery is progressing and ENT wants to make sure her vocal cords are still getting stronger. And, if yes, then she can come off her reflux medicine too...woot! Having the MRI done here in Charlotte will cut a day off our trip to Philly as they will just use the results from this MRI for their records too. So all of this will be going down on a Tuesday (not November 22!)between the end of October and mid-December...a huge coordination on the part of the hospital to get both these doctors in the same place at the same time.
Her head shape is getting better too. The back of her skull has really rounded out nicely already and the sides are coming along...she still will probablly have to have the helmet until right before her birthday...what a super birthday present that will be!
Friday, September 16, 2011
Thursday, August 11, 2011
Wednesday, August 10, 2011
For $25 you get Egg Roll
"I'd like to thank the Academy, my fellow nominees and all the little people who made this possible."-Excerpted from my Worst Mom of the Year acceptance speech 2011 (I don't want to get ahead of myself and think this may be my only winning year).
So, Caroline got in the car with Brian last Tuesday when he picked her up from school and she was wailing, "MOMMY forgot to sign me up for gymnastics!!!" Brian called me and asked what she was talking about? I had no idea...I wasn't expecting a comment from her like that for at least another 8 or 9 years. So, I figured maybe one of her little friends had been signed up somewhere and was telling all the kids in their class about (BTW, I loathe other people's children for this exact reason...time you knew that.)
Anywho, I guessed at who the little culprit might be and happened to see his/her Mom in the parking lot at drop off the next morning. MUCH to my consternation she said yes she had signed "little one" up and the classes are at school...during school hours...in the gym. THEN she tells me that the classes started the day before and EVERY KID (read that again...EVERY KID) in Caroline's class was signed up...except her. I pictured them putting her in a dark room alone during gymnastics hour as punishment for having such a LAME Mom.
So, I went to the Director and said "How was this publicized?" She said signs, flyers and a take home paper. Geez. Could I feel more like the scum on the belly on the worm at the bottom of the ocean (i.e. as low as it goes?).
So although we got there a round-the-back kind of way, it worked out GREAT!I didn't have to take her anywhere...all I had to do was pay my money (just $25 smackers a month) and she was set to be the next Mary Lou Retton!
So, the big day arrived and Caroline was SUPER excited to get to school for class. When I saw her that evening I confidently asked "How was class today...what did you learn?" To which she, laid down on the ground, pulled her knees to her chest and rolled around on the floor..."I learned Egg Roll!" And that, my friends, is what you get from a $25 gymnastics class that "every other kid in her class is in, that she would die alone if she didn't take, and stressed me out enough to think I had damaged her permanently (that will come soon enough)-gymnastics class.
So, Caroline got in the car with Brian last Tuesday when he picked her up from school and she was wailing, "MOMMY forgot to sign me up for gymnastics!!!" Brian called me and asked what she was talking about? I had no idea...I wasn't expecting a comment from her like that for at least another 8 or 9 years. So, I figured maybe one of her little friends had been signed up somewhere and was telling all the kids in their class about (BTW, I loathe other people's children for this exact reason...time you knew that.)
Anywho, I guessed at who the little culprit might be and happened to see his/her Mom in the parking lot at drop off the next morning. MUCH to my consternation she said yes she had signed "little one" up and the classes are at school...during school hours...in the gym. THEN she tells me that the classes started the day before and EVERY KID (read that again...EVERY KID) in Caroline's class was signed up...except her. I pictured them putting her in a dark room alone during gymnastics hour as punishment for having such a LAME Mom.
So, I went to the Director and said "How was this publicized?" She said signs, flyers and a take home paper. Geez. Could I feel more like the scum on the belly on the worm at the bottom of the ocean (i.e. as low as it goes?).
So although we got there a round-the-back kind of way, it worked out GREAT!I didn't have to take her anywhere...all I had to do was pay my money (just $25 smackers a month) and she was set to be the next Mary Lou Retton!
So, the big day arrived and Caroline was SUPER excited to get to school for class. When I saw her that evening I confidently asked "How was class today...what did you learn?" To which she, laid down on the ground, pulled her knees to her chest and rolled around on the floor..."I learned Egg Roll!" And that, my friends, is what you get from a $25 gymnastics class that "every other kid in her class is in, that she would die alone if she didn't take, and stressed me out enough to think I had damaged her permanently (that will come soon enough)-gymnastics class.
Thursday, July 28, 2011
You probably think this is going to be about helmets...
Dear Blog Readers:
Although you are few and far between, please allow me an indulgence with today's post without the fear that you will never return based on its content. I just feel like writing today.
Bear with me...here we go...
Why is it that when I'm driving in my car alone I compose blog entries that bring me to the brink of belly-aching hilarity and near-miss collisions, yet when I rush to jot down these little gems, they've completely escaped me. Today is such day....alas, I cannot recall what caused a fit of laughter between Exits 25 & 28 on my morning commute. Most often these posts jostle around in my brain in the form of conversations befitting an insane person just shy of their asylum admittance mulling things over with their multiple personalities. I openly laugh/smirk/hurrah etc out loud in public places, forgetting myself and my environment...lost in the teleprompter in my head. In these conversations, I've composed a thousand "resignation" letters (read:all the things you never have and never will say), dreamed of the day when I actually WILL stop my car and tell the person behind me EXACTLY what I think of their driving skills, and lamented about exactly how I will work the word "vociferous" into a blog entry (DONE!).
So, my friends, to sum up what today's entry is about...nothing.
By the way, CeCe had her helmet appointment yesterday and her new accessory will arrive August 10th. There, see...if you read to the end, you will get useful information! Au Revoir!
Although you are few and far between, please allow me an indulgence with today's post without the fear that you will never return based on its content. I just feel like writing today.
Bear with me...here we go...
Why is it that when I'm driving in my car alone I compose blog entries that bring me to the brink of belly-aching hilarity and near-miss collisions, yet when I rush to jot down these little gems, they've completely escaped me. Today is such day....alas, I cannot recall what caused a fit of laughter between Exits 25 & 28 on my morning commute. Most often these posts jostle around in my brain in the form of conversations befitting an insane person just shy of their asylum admittance mulling things over with their multiple personalities. I openly laugh/smirk/hurrah etc out loud in public places, forgetting myself and my environment...lost in the teleprompter in my head. In these conversations, I've composed a thousand "resignation" letters (read:all the things you never have and never will say), dreamed of the day when I actually WILL stop my car and tell the person behind me EXACTLY what I think of their driving skills, and lamented about exactly how I will work the word "vociferous" into a blog entry (DONE!).
So, my friends, to sum up what today's entry is about...nothing.
By the way, CeCe had her helmet appointment yesterday and her new accessory will arrive August 10th. There, see...if you read to the end, you will get useful information! Au Revoir!
Wednesday, June 29, 2011
Date Stamped.
I seem to forget a lot of things these days...where I've laid my keys, why I'm now standing in front of the pantry (what in the world did I come over here for?)...But in my life there have been stand out moments that I've shared with fellow Americans and private ones shared with just a few loved ones. Do you remember where you were when the Space Shuttle exploded? How about when you saw the Twin Towers fall? These are events that bring very specific memories to me in time and space (8th grade in the hall outside my social studies classroom and Ballantyne Country Club while on a tour). I can remember them so clearly, yet often wish I couldn't.
I'm having some trouble sleeping. That's not really anything new, though. But for now I can at least point to why. Today marks the one year anniversary, if you will, that an ultrasound tech walked out of a room for 7 minutes while Brian and I reveled in the fact that we were having another girl before the doctor came back in, silently studied the images before him and declared..."Your baby has Spina Bifida, I'm sorry."
The whirlwind that began at those very words, is a moment in time frozen in my memory. I can hear his voice, I can feel my guts being ripped apart, and see what the doc keeps pointing at on the video screen as he relays to us what CeCe's future will be. The picture he painted that day was dim.
Now, ENOUGH OF THAT! CeCe is 7 MONTHS OLD, PEOPLE! She is the sweetest little joy you have ever seen and brings smiles and assurance to everyone that meets her. She loves people and feels compelled to put them at ease with her by offering an easy going personality and a bright and sunny outlook. She continues to get cautious kudos from her doctors at each visit and maybe, just maybe, remind them that it's not all about what they learned in a book.
As you know, she has had her struggles these past 7 months-4 surgeries, bowel issues, and she is in need of a helmet to correct some issues related to those surgeries. But, you know what...she is just about sitting independently, rolls all over the place, eats like a horse, I even saw her scoot backwards a little bit yesterday. I don't say all of this in a bragging way, I say it to emphasize a point. She IS NOT what they said she would be one year ago....She IS who she is...without asterisks or footnotes.
I'm lucky to be her mom...to get to see her everyday and dream of her future. She is surrounded by amazing people who have lifted her up when she needed it most and skillfully and gently brought her back down to embrace her every success.
Today is going to be a good day.
I'm having some trouble sleeping. That's not really anything new, though. But for now I can at least point to why. Today marks the one year anniversary, if you will, that an ultrasound tech walked out of a room for 7 minutes while Brian and I reveled in the fact that we were having another girl before the doctor came back in, silently studied the images before him and declared..."Your baby has Spina Bifida, I'm sorry."
The whirlwind that began at those very words, is a moment in time frozen in my memory. I can hear his voice, I can feel my guts being ripped apart, and see what the doc keeps pointing at on the video screen as he relays to us what CeCe's future will be. The picture he painted that day was dim.
Now, ENOUGH OF THAT! CeCe is 7 MONTHS OLD, PEOPLE! She is the sweetest little joy you have ever seen and brings smiles and assurance to everyone that meets her. She loves people and feels compelled to put them at ease with her by offering an easy going personality and a bright and sunny outlook. She continues to get cautious kudos from her doctors at each visit and maybe, just maybe, remind them that it's not all about what they learned in a book.
As you know, she has had her struggles these past 7 months-4 surgeries, bowel issues, and she is in need of a helmet to correct some issues related to those surgeries. But, you know what...she is just about sitting independently, rolls all over the place, eats like a horse, I even saw her scoot backwards a little bit yesterday. I don't say all of this in a bragging way, I say it to emphasize a point. She IS NOT what they said she would be one year ago....She IS who she is...without asterisks or footnotes.
I'm lucky to be her mom...to get to see her everyday and dream of her future. She is surrounded by amazing people who have lifted her up when she needed it most and skillfully and gently brought her back down to embrace her every success.
Today is going to be a good day.
Thursday, June 16, 2011
The video
As participants in the MOMs study, we were asked in March to send in a video of CeCe with a sign in the video that said "Somewhere Over the Rainbow" or "What a Wonderful World". It was shown to the staff and doctors at a recent meeting. These kids are just so inspirational...bring a box of tissues.
Here it is...cut and paste the link and enter the password.
http://vimeo.com/24723653
password is: cfdt
Here it is...cut and paste the link and enter the password.
http://vimeo.com/24723653
password is: cfdt
Monday, May 23, 2011
"That's everything!"
Just a quick note here. This gives me chills...
My sister, Gretchen (Gretel!), an accomplished Physical Therapist, was up to visit us yesterday. She was doing some work on her laptop and CeCe was sitting next to her in her Bumbo seat. Out of the corner of her eye, she saw CeCe point her feet and wriggle her toes. She said "Hey! She has Dorsal Flexion!"..or something like that. We had seen CeCe do this before and but didn't really KNOW what it meant. Gretchen put her few a few paces and said she's reflexing when she touches her toes and pushes back at her when she pushes her feet upwards. She seemed very excited about this and said CeCe seems to be responding at an S1-S2 level. I said that's great knowing there is also S3-S5 below that. So I asked..."well, what does that mean as far as feeling goes?" and she said "That's everything!".
Awesome.
My sister, Gretchen (Gretel!), an accomplished Physical Therapist, was up to visit us yesterday. She was doing some work on her laptop and CeCe was sitting next to her in her Bumbo seat. Out of the corner of her eye, she saw CeCe point her feet and wriggle her toes. She said "Hey! She has Dorsal Flexion!"..or something like that. We had seen CeCe do this before and but didn't really KNOW what it meant. Gretchen put her few a few paces and said she's reflexing when she touches her toes and pushes back at her when she pushes her feet upwards. She seemed very excited about this and said CeCe seems to be responding at an S1-S2 level. I said that's great knowing there is also S3-S5 below that. So I asked..."well, what does that mean as far as feeling goes?" and she said "That's everything!".
Awesome.
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