I knew it would happen one day or another...but TODAY is the DAY! CeCe is front page news in our local paper....check her out! Thank you, John Deem!
http://www.lakenormancitizen.com/news/item/2162-a-little-girl-with-a-lot-of-backbone-fights-to-walk.html
To donate to the Walk N Roll...please click...
http://www.walknrollncsc.org/faf/search/searchTeamPart.asp?ievent=1014740&lis=1&kntae1014740=83AEE55ED8F240DCB7C3F2DF014E78A8&team=4975325
Thursday, May 3, 2012
Saturday, April 28, 2012
Last chance, peeps...to donate to an amazing cause...The Walk N Roll is THIS Saturday... here's the site
http://www.walknrollncsc.org/faf/home/default.asp?ievent=1014740&lis=1&kntae1014740=5640ADC650A5498496B8992DCE30AB88
And here's a little inspiration...Thank you for helping future babies by supporting CeCe NOW!
http://www.walknrollncsc.org/faf/home/default.asp?ievent=1014740&lis=1&kntae1014740=5640ADC650A5498496B8992DCE30AB88
And here's a little inspiration...Thank you for helping future babies by supporting CeCe NOW!
Tuesday, March 27, 2012
And away she goes!
CeCe got her first walker yesterday and took to it like a fish to water. What a blessing it is to watch her tear up the living room, NASCAR -style.
She got it so quickly...she didn't want any help from her PT...as shown here...
THAT'S MY GIRL!!!!
Ok. Ok....maybe she didn't love it the WHOLE time... :)
.JPG)
She got it so quickly...she didn't want any help from her PT...as shown here...
THAT'S MY GIRL!!!!
Ok. Ok....maybe she didn't love it the WHOLE time... :)
.JPG)
Tuesday, March 13, 2012
All walks of life
What a surreal experience it has been to move to a new neighborhood. Packing up all your memories (and junk) into little boxes and transporting all to something you hope is a bigger better change for your family. We are in a new place where no one knows our history and I find myself wondering how/when/if to tell them about CeCe or let them just meet her and SEE for themselves rather than putting her limitations and expectations out there for them ahead of time. Last night we met a new neighbor with a child just slightly younger than CeCe and I didn't mention a thing and none of it seemed to matter. I liked that....I like it here.
CeCe had an OT (Occupational Therapy) evaluation last week to check about her thumb tucking when she crawls and it has been deemed "just a habit, not a problem"...yea! She also had PT yesterday and in addition...she has the hand-eye coordination of an 18 month old, yea, again! She has also grown out of her first set of "Magic Shoes", she is going to be getting a reverse walker. It looks like this..
As soon as the PT said it, I immediately grabbed CeCe a little tighter. It's hard still for me to know she needs "Assisted Devices"...that lasted about 2 seconds and then I thought. "Awesome! She'll be able to cruise around with this!" Knowing it will all take a little getting used too..but what doesn't?
She also got a great report from her teacher yesterday...She is playing outside with the other kids (a goal of ours as the weather gets warmer)and can get up the slide, down the slide and go through the tunnel...ALL BY HERSELF...I just may stalk the bushes in the next few days to see it myself. Here's a video of her going up and down our stairs in the new house...something she did DAY 2 here and NEVER did in the old joint...
Anyway...enough bragging. Team CeCe is well underway and gearing up for the first NC/SC sb walk on May 5th. Be a pal and donate to the cause or better yet, JOIN US! http://www.walknrollncsc.org/faf/search/searchTeamPart.asp?ievent=1014740&lis=1&kntae1014740=7AC5CB812B2F4D53BAF73004437C827D&team=4975325
Also, keep us in your prayers going into May...CeCe has another big MRI coming up to check her syrinx and fluid around her brain...all seems to be really well, but we loathe the sedated MRIs (probably not too much fun for her either, come to it.)
Here's some current pics of our Super Girl!
CeCe had an OT (Occupational Therapy) evaluation last week to check about her thumb tucking when she crawls and it has been deemed "just a habit, not a problem"...yea! She also had PT yesterday and in addition...she has the hand-eye coordination of an 18 month old, yea, again! She has also grown out of her first set of "Magic Shoes", she is going to be getting a reverse walker. It looks like this..
As soon as the PT said it, I immediately grabbed CeCe a little tighter. It's hard still for me to know she needs "Assisted Devices"...that lasted about 2 seconds and then I thought. "Awesome! She'll be able to cruise around with this!" Knowing it will all take a little getting used too..but what doesn't?
She also got a great report from her teacher yesterday...She is playing outside with the other kids (a goal of ours as the weather gets warmer)and can get up the slide, down the slide and go through the tunnel...ALL BY HERSELF...I just may stalk the bushes in the next few days to see it myself. Here's a video of her going up and down our stairs in the new house...something she did DAY 2 here and NEVER did in the old joint...
Anyway...enough bragging. Team CeCe is well underway and gearing up for the first NC/SC sb walk on May 5th. Be a pal and donate to the cause or better yet, JOIN US! http://www.walknrollncsc.org/faf/search/searchTeamPart.asp?ievent=1014740&lis=1&kntae1014740=7AC5CB812B2F4D53BAF73004437C827D&team=4975325
Also, keep us in your prayers going into May...CeCe has another big MRI coming up to check her syrinx and fluid around her brain...all seems to be really well, but we loathe the sedated MRIs (probably not too much fun for her either, come to it.)
Here's some current pics of our Super Girl!
Monday, February 13, 2012
Team CeCe is ready for action!
It's been awhillllleeeeee since our last update, but here we are in 2012 and ready for whatever life brings us!
CeCe is doing well and just recently had her annual evaluation from the county to determine what services she needs and we are pleased to say...no new services are needed at this time! She is progressing in all areas....pulling up (with and without her braces), vocalizations, crawling on all fours like a mad woman and eating everything is sight! She is a true charmer and personality is really srtating to develop...you should see her put Caroline in her place...HILARIOUS!
We've had a great year so far and are so excited to introduce to you Team CeCe! North Carolina and South Carolina have just mobilized the first ever Walk 'N Roll event on Saturday, May 5th...and we need you to support Team CeCe. Here is our special website set up to give you all the details. We'd love to have you join us in person (or spirit!) on this special day to promote awareness and raise money to support sb research.
http://www.walknrollncsc.org/faf/donorReg/donorPledge.asp?ievent=1014740&lis=0&kntae1014740=9AAA319138BB4950BB6F4060172C28DB
Hope to see you there! Go CCB!!!!
CeCe is doing well and just recently had her annual evaluation from the county to determine what services she needs and we are pleased to say...no new services are needed at this time! She is progressing in all areas....pulling up (with and without her braces), vocalizations, crawling on all fours like a mad woman and eating everything is sight! She is a true charmer and personality is really srtating to develop...you should see her put Caroline in her place...HILARIOUS!
http://www.walknrollncsc.org/faf/donorReg/donorPledge.asp?ievent=1014740&lis=0&kntae1014740=9AAA319138BB4950BB6F4060172C28DB
Hope to see you there! Go CCB!!!!
Thursday, December 8, 2011
“Hey, Grecian formula businessman, SMILE AT MY KID!”
She won’t leave you alone. She’s going to keep craning her neck to get into your field vision laughing and smiling until you can’t ignore her anymore…so you may as well give up and just grin right back at her. What’s up with these dudes? Everywhere we go and everyone we meet can’t help but smile at CCB…she makes sure of it! But these guys, well, they are the ones that actually need a little CCB in their lives to brighten up their crappy day.
She so rocked the docs this past week at her 12 month Philly triumphant return! We arrived on Monday afternoon and made a quick visit to the Macy’s downtown that has the biggest light display of any Macy’s in America. Julie Andrews narrates and there’s about 10 minute light show right in the middle of the store, 4 stories high, every hour on the hour….super worth the trip! They also have a Dickens village that you can walk through that tells the Scrooge story with puppets and animatronics….a throw back to my kid days at Pogue’s in downtown Cincinnati.
It was so surreal being back at CHOP…when we left a year ago it was decorated for Christmas….when we returned a year later, and it was decorated for Christmas, as if no time had passed yet so much has happened. Ryan Seacrest (as you may remember from a previous post) visited the SDU just days after I was released…he now has a broadcast studio that he donated in the Atrium for kids to do talent shows, celebrities to broadcast from etc. We saw familiar faces in the SDU, NICU etc that remembered us… and remembered CeCe…that was cool.
Our first appointment Tuesday morning was with Dr. Hayes-a developmental pediatrician. She was on the militant side but you could tell she’d been through the trenches and seen it all. I honestly think CeCe stunned her a little bit. She probably had expectations coming in about what she could or couldn’t do…and CeCe seemed to anticipate her every test. She would say “I need to get a look at her back”, and CeCe would turn her back to her. Then, “I need her to flex her foot, move her leg, dance a jig” (or, whatever) and CeCe would do it as if she understood her! Then the coup de gras…she said…”Can I see her crawl?” and with Brian’s watch as the lure and prize, she four point crawled for this doc for the VERY FIRST TIME! I teared up and scoop up my girl…what a show off!!!!! The doc called her “Fabulous!” and off we went to the next appointment.
The second appointment was with a PhD of some kind that evaluated her abilities for cognition at her age level. She put CeCe through problem-solving test (super fun to watch her figure out how to get a toy out of a clear cube the was open on one side, but the doc kept shifting the open side forcing her to problem solve to get the toy). We heard her imitate what the doc was saying to her…for instance, a toy fell on the floor and the doc said “I’ll get it!” to which CeCe said “Ah-Ge-It”! She tested her with peg boards, tea cups, pictures and shapes. Each time the doc would demonstrate what she wanted CeCe to do and each time…SHE DID IT! Such a proud day for us! This doc called her “DELIGHTFUL!” I was like, “Yeah, I know!”
The rest of that day was pretty uneventful…dealing with a tired child and a shared hotel room presented its challenges but, we managed.
Day Two: This is the one we asked so many to pray on: Urology. After waiting an hour and 20 minutes past our appointment time they came and got us for her VUDS (Video Urodynamics) testing. This measures the pressures and basically the elasticity of her bladder walls. It takes about 45 or so as the fill her bladder with fluid and a computer and ultrasound mark when it contracts or leaks (if she coughs, cries, or sneezes….that happens to me too !). It’s a boring process and I couldn’t understand the computer graph so we just basically stood there and helped keep her calm. Little Bit fell asleep (thankfully) about ½ way through and managed about a 20 minute power nap). When they finished, the doc and nurse were EXTREMELY quite…so much so that both Brian and I got very worried…EVERYTIME they get quiet like this, bad news has followed…but NOT this time! CeCe’s bladder IS contracting to some extent on her own, but she does also leak when she cries and laughs. But her kidneys look perfect, she has ZERO signs of reflux (which means we don’t’ have to worry about that anymore!) but she doesn’t quite empty all the way. What does that mean? Good question! No more antibiotic everyday! WOO HOO! And, as expected, when she is ready to be potty trained and what they call “socially continent” she most likely will have to be catherized to keep her dry…not a big deal and to be expected. But, who knows….again, time will tell!
All in all, this was a great trip. CeCe has proved once again that she is her own person and is not a text book child.
Finally, our flight home was, well, let’s just say turbulent. So, to the Flight Crew on Flight #1527 from PHL to CLT…let me apologize now and say “Clean Up in Aisle 14”, you may want to replace the barf bag in the seat back. Note to self…never travel the day a weather front is moving through….I believe I tossed my cookies somewhere over Virginia. My sincerest apologies to the poor woman strapped to her seat like a caged animal with a barfer and a baby….hope your Thursday turns out better than your Wednesday (and thanks for passing me the second bag).
Some random things to think about…
1. Why to Philadelphians love Dunkin Donuts so much that they are omnipotent?
2. Why is there a show called “It’s Always Sunny in Philadelphia” when it rains every time we are there?
3. What the crap is Scrapple made out of?
4. Camden, NJ should change its motto to the City of Brotherly Love or similar, then maybe everybody wouldn’t be shooting everybody else. Hate to be a real estate agent there….”And only 6 people have been shot in this house….way below the community average!”
And to that I say to you, beloved Blog Reader(s), Peace Out, Philly…see you in 18 months!
She so rocked the docs this past week at her 12 month Philly triumphant return! We arrived on Monday afternoon and made a quick visit to the Macy’s downtown that has the biggest light display of any Macy’s in America. Julie Andrews narrates and there’s about 10 minute light show right in the middle of the store, 4 stories high, every hour on the hour….super worth the trip! They also have a Dickens village that you can walk through that tells the Scrooge story with puppets and animatronics….a throw back to my kid days at Pogue’s in downtown Cincinnati.
It was so surreal being back at CHOP…when we left a year ago it was decorated for Christmas….when we returned a year later, and it was decorated for Christmas, as if no time had passed yet so much has happened. Ryan Seacrest (as you may remember from a previous post) visited the SDU just days after I was released…he now has a broadcast studio that he donated in the Atrium for kids to do talent shows, celebrities to broadcast from etc. We saw familiar faces in the SDU, NICU etc that remembered us… and remembered CeCe…that was cool.
Our first appointment Tuesday morning was with Dr. Hayes-a developmental pediatrician. She was on the militant side but you could tell she’d been through the trenches and seen it all. I honestly think CeCe stunned her a little bit. She probably had expectations coming in about what she could or couldn’t do…and CeCe seemed to anticipate her every test. She would say “I need to get a look at her back”, and CeCe would turn her back to her. Then, “I need her to flex her foot, move her leg, dance a jig” (or, whatever) and CeCe would do it as if she understood her! Then the coup de gras…she said…”Can I see her crawl?” and with Brian’s watch as the lure and prize, she four point crawled for this doc for the VERY FIRST TIME! I teared up and scoop up my girl…what a show off!!!!! The doc called her “Fabulous!” and off we went to the next appointment.
The second appointment was with a PhD of some kind that evaluated her abilities for cognition at her age level. She put CeCe through problem-solving test (super fun to watch her figure out how to get a toy out of a clear cube the was open on one side, but the doc kept shifting the open side forcing her to problem solve to get the toy). We heard her imitate what the doc was saying to her…for instance, a toy fell on the floor and the doc said “I’ll get it!” to which CeCe said “Ah-Ge-It”! She tested her with peg boards, tea cups, pictures and shapes. Each time the doc would demonstrate what she wanted CeCe to do and each time…SHE DID IT! Such a proud day for us! This doc called her “DELIGHTFUL!” I was like, “Yeah, I know!”
The rest of that day was pretty uneventful…dealing with a tired child and a shared hotel room presented its challenges but, we managed.
Day Two: This is the one we asked so many to pray on: Urology. After waiting an hour and 20 minutes past our appointment time they came and got us for her VUDS (Video Urodynamics) testing. This measures the pressures and basically the elasticity of her bladder walls. It takes about 45 or so as the fill her bladder with fluid and a computer and ultrasound mark when it contracts or leaks (if she coughs, cries, or sneezes….that happens to me too !). It’s a boring process and I couldn’t understand the computer graph so we just basically stood there and helped keep her calm. Little Bit fell asleep (thankfully) about ½ way through and managed about a 20 minute power nap). When they finished, the doc and nurse were EXTREMELY quite…so much so that both Brian and I got very worried…EVERYTIME they get quiet like this, bad news has followed…but NOT this time! CeCe’s bladder IS contracting to some extent on her own, but she does also leak when she cries and laughs. But her kidneys look perfect, she has ZERO signs of reflux (which means we don’t’ have to worry about that anymore!) but she doesn’t quite empty all the way. What does that mean? Good question! No more antibiotic everyday! WOO HOO! And, as expected, when she is ready to be potty trained and what they call “socially continent” she most likely will have to be catherized to keep her dry…not a big deal and to be expected. But, who knows….again, time will tell!
All in all, this was a great trip. CeCe has proved once again that she is her own person and is not a text book child.
Finally, our flight home was, well, let’s just say turbulent. So, to the Flight Crew on Flight #1527 from PHL to CLT…let me apologize now and say “Clean Up in Aisle 14”, you may want to replace the barf bag in the seat back. Note to self…never travel the day a weather front is moving through….I believe I tossed my cookies somewhere over Virginia. My sincerest apologies to the poor woman strapped to her seat like a caged animal with a barfer and a baby….hope your Thursday turns out better than your Wednesday (and thanks for passing me the second bag).
Some random things to think about…
1. Why to Philadelphians love Dunkin Donuts so much that they are omnipotent?
2. Why is there a show called “It’s Always Sunny in Philadelphia” when it rains every time we are there?
3. What the crap is Scrapple made out of?
4. Camden, NJ should change its motto to the City of Brotherly Love or similar, then maybe everybody wouldn’t be shooting everybody else. Hate to be a real estate agent there….”And only 6 people have been shot in this house….way below the community average!”
And to that I say to you, beloved Blog Reader(s), Peace Out, Philly…see you in 18 months!
Tuesday, December 6, 2011
Super quick and super awesome
I promise to post more later, but the quick gist for today is....AWESOME! CeCe's first appointment was with a Developmental Pediatrician who put her through the physical paces...checking reflexes, social interaction, and all other milestone abilites. The doc was obviously impressed! She called her fabulous and had nothing but great things to say...CeCe even showed off by crawling on ALL FOURS for the first time for her! Get it, girl! We don't get a true clinical opinion because they don't know her outside of the 45 minutes they spent with her today..but she had such great things to say.
She also saw a neurodevelpmental doc that checked all her cognitive skills and abilites...CeCe did skills for this doc I never knew she could do...stacking two blocks, problem solving, and imitation among them. This doc called her Delightful! It was so fun to watch her impress them.
Urology up tomorrow!
She also saw a neurodevelpmental doc that checked all her cognitive skills and abilites...CeCe did skills for this doc I never knew she could do...stacking two blocks, problem solving, and imitation among them. This doc called her Delightful! It was so fun to watch her impress them.
Urology up tomorrow!
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