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!
Thursday, July 28, 2011
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.
Saturday, May 14, 2011
16lbs and 2oz of perfection!
Not gonna lie...Brian and I were amped up about this appointment. We didn't know what to expect from CeCe's first sb clinic. In reality, it was probably the best dr. appt we've EVER been to. Seven docs came in and out in about 2 hours...that's better than the wait time at most of their offices!
CeCe weighed in at a perfect 16lbs, 2oz and 26 inches long (tall?)...that puts her right in the middle at the 50th percentile. They also measured her head circumference and she was at 42cm...right where thay wanted her to be.
The first doc in was the nutritionist...her very first comment upon laying eyes on CeCe's roly-poly arms and thighs was "I see we have nothing to talk about!" HA!
Genetics came in next-all three of them were interested in our participation in the MOMs study...they had offered it to patients before but they had never met anyone that had participated. We shared our experiences with them and that was that. Since CeCe doesn't have any additional genetic issues, they really didn't have anything to say to us.
I was very concerned with what Urology would have to say. Brian had to take her in early on Friday to get a bladder and kidney ultrasound....these tests always put me on pins and needles...90% of sb kids need some kind of bladder/bowel management program due to their inability to empty them completely causing infections and kidney reflux. In the 1960s, when sb was first getting any real attention, many people passed away due to renal failure due to this reflux. Today, for instance, although CeCe hasn't yet shown signs of infection, she is kept on a daily, low-dose of amoxicillian to keep any uppity bacteria at bay....a minimal annoyance for potentially amazing results...but I digress. The ultrasound tech said her bladder was empty (though I've learned not to accept this until the docs have confirmed) and then...the doc confirmed...kidneys are PERFECT and she is voiding all on her own!!! The Urology doc is a funny little guy....he's always in a very self-important hurried state and posturing to anyone else in the room....but he gives her good care and that's all we ask (most of the time.)
Neuro came and went, no change, no issues.
Orthopedics (bone guy!) pretty much came and went. She hadn't been seen by one of these docs since NICU...he said she looked and moved great and believes (like we do) that she CAN feel parts of the bottoms of her feet and toes. He saw no issues that currently need to be addressed.
The last doc was Physical Medicine. I had never heard of this before and it was explained that they are sort of like Advanced Pediatrics. She made sure CeCe was doing all her baby stuff...following objects, moving her attention to whomever was speaking and double checked her PT exercises...She commented that CeCe should be about 15 years old to have led the life she's led already.
So, A GREAT DAY! We head back to this same environment in 3-4 months...remember, she missed her first two opportunities to go to clininc because she was laid up in the hospital.
One of the best parts was getting to meet two other famalies. We met an 8 month old girl who was not shunted and had no other issues since her back closure surgery...she looked great...already eating table food, feeding herself and trying to learn to crawl. We also met another mom with her 3 year old who had just moved to Hendersonville, NC from St. Louis...Charlotte is the closest place for her for neuro. Her little girl was SUPER cute and got around with both AFOs (ankle foot orthotics) and a wheelchair. She wheeled herself ALL over that place like a speed demon...never slowed down...not once!
Anyway, that's about it...CeCe has some work to do now...gotta keep everything moving and shaking. She starts school on Monday!
CeCe weighed in at a perfect 16lbs, 2oz and 26 inches long (tall?)...that puts her right in the middle at the 50th percentile. They also measured her head circumference and she was at 42cm...right where thay wanted her to be.
The first doc in was the nutritionist...her very first comment upon laying eyes on CeCe's roly-poly arms and thighs was "I see we have nothing to talk about!" HA!
Genetics came in next-all three of them were interested in our participation in the MOMs study...they had offered it to patients before but they had never met anyone that had participated. We shared our experiences with them and that was that. Since CeCe doesn't have any additional genetic issues, they really didn't have anything to say to us.
I was very concerned with what Urology would have to say. Brian had to take her in early on Friday to get a bladder and kidney ultrasound....these tests always put me on pins and needles...90% of sb kids need some kind of bladder/bowel management program due to their inability to empty them completely causing infections and kidney reflux. In the 1960s, when sb was first getting any real attention, many people passed away due to renal failure due to this reflux. Today, for instance, although CeCe hasn't yet shown signs of infection, she is kept on a daily, low-dose of amoxicillian to keep any uppity bacteria at bay....a minimal annoyance for potentially amazing results...but I digress. The ultrasound tech said her bladder was empty (though I've learned not to accept this until the docs have confirmed) and then...the doc confirmed...kidneys are PERFECT and she is voiding all on her own!!! The Urology doc is a funny little guy....he's always in a very self-important hurried state and posturing to anyone else in the room....but he gives her good care and that's all we ask (most of the time.)
Neuro came and went, no change, no issues.
Orthopedics (bone guy!) pretty much came and went. She hadn't been seen by one of these docs since NICU...he said she looked and moved great and believes (like we do) that she CAN feel parts of the bottoms of her feet and toes. He saw no issues that currently need to be addressed.
The last doc was Physical Medicine. I had never heard of this before and it was explained that they are sort of like Advanced Pediatrics. She made sure CeCe was doing all her baby stuff...following objects, moving her attention to whomever was speaking and double checked her PT exercises...She commented that CeCe should be about 15 years old to have led the life she's led already.
So, A GREAT DAY! We head back to this same environment in 3-4 months...remember, she missed her first two opportunities to go to clininc because she was laid up in the hospital.
One of the best parts was getting to meet two other famalies. We met an 8 month old girl who was not shunted and had no other issues since her back closure surgery...she looked great...already eating table food, feeding herself and trying to learn to crawl. We also met another mom with her 3 year old who had just moved to Hendersonville, NC from St. Louis...Charlotte is the closest place for her for neuro. Her little girl was SUPER cute and got around with both AFOs (ankle foot orthotics) and a wheelchair. She wheeled herself ALL over that place like a speed demon...never slowed down...not once!
Anyway, that's about it...CeCe has some work to do now...gotta keep everything moving and shaking. She starts school on Monday!
Friday, May 6, 2011
ENT and School Update
CeCe had her latest ENT follow-up this morning. The good doctor, of course, wanted to scope her to check out her vocal cord movement and was pleased with what he saw. Her left cord is moving purposefully and functionally and her right is improving, although it's still not back to normal...yet. He expressed that he did think this would return in time, on it's own. He also said he has several patients that live just fine only having one functioning vocal cord. Then he added, very solemnly and dramtically...that although her speaking voice should be fine, she may have trouble hitting "the high notes" when singing. Ummmm, whaaaa? Brian and I burst out laughing at this one...To a family who hears something like this about their child for the first time, I can imagine that is may be tough to hear. To us? Excuse the pun....this was music to our ears! If this is all Little Miss has to deal with, we are ecstatic! Aside from the genetic impossibilities herein, there goes her diva opera career...or maybe she'll just have to be an alto! He didn't mean for this bit of news to be humorous...but it certainly was...to us. All in perspective, my good man, all in perspective.
Sooooo, all that said....CeCe has now been given a great big, giant, jolly green light to start "school" on Monday the 16th....which also means Mr. Mom is headed back to work. Boo! When asked how I feel about this as our new reality, my answer is...medium. The ENT said it best.."it's time to move on with all your lives and she can't live in a bubble"....so, to school she goes and we'll see how it goes. I bet she rocks that baby room...afterall, she's so worldly!
Sooooo, all that said....CeCe has now been given a great big, giant, jolly green light to start "school" on Monday the 16th....which also means Mr. Mom is headed back to work. Boo! When asked how I feel about this as our new reality, my answer is...medium. The ENT said it best.."it's time to move on with all your lives and she can't live in a bubble"....so, to school she goes and we'll see how it goes. I bet she rocks that baby room...afterall, she's so worldly!
Friday, April 29, 2011
Pushing up and rolling off!
CeCe had another 6-week neuro follow-up yesterday. The neuro said her ventricles are still smaller than he'd like to see them so they needed to dial up her shunt...so she's back to "CeCe 2.0"! I know this seems counterintuitive since the hydro caused her ventricles to be "big"...but there is such a thing as too small. It can cause her shunt to clog more easily forcing an emergency revision...something we DO NOT want her to go through. The doctor has us watching/listening out for any changes she may experience because of the shunt adjustment. He also checked her kick reflex and liked what he saw there too...she pushed back at him with her legs when he ticked her off!
Bright notes this week...Monday-Little Miss is pushing herself up when she is laying (lying?) on her tummy...she used to just fall asleep. You should have seen the three of us (Brian, Caroline and Me) kneeling in front of her cheering her on....a Broadway performer should play to such an ovation! THEN, to top that, Thursday-she is rolling from her belly to her back! No more relaxing on the ottoman for her! She makes us proud everyday...what a joy!
We head to ENT next Friday and clinic the Friday after that...I'll update then!
Bright notes this week...Monday-Little Miss is pushing herself up when she is laying (lying?) on her tummy...she used to just fall asleep. You should have seen the three of us (Brian, Caroline and Me) kneeling in front of her cheering her on....a Broadway performer should play to such an ovation! THEN, to top that, Thursday-she is rolling from her belly to her back! No more relaxing on the ottoman for her! She makes us proud everyday...what a joy!
We head to ENT next Friday and clinic the Friday after that...I'll update then!
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