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.
Monday, May 23, 2011
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!
Friday, April 22, 2011
Detour
A friend passed this along to me today....this is the perfect description of raising a special needs child...
WELCOME TO HOLLAND!
byEmily Perl Kingsley.c1987
by Emily Perl Kingsley.
All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned. And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
WELCOME TO HOLLAND!
byEmily Perl Kingsley.c1987
by Emily Perl Kingsley.
All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned. And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thursday, April 21, 2011
5 months old
Holy cow! CeCe will be 5 months old tomorrow! Sorry for such a long delay in posts, but this really has been a case of "no news is good news"!She has come so far in such a short while. She came for a SURPRISE visit to my work today...I got giddy when I saw Brian bringing her around the corner. She had been snoozing in the car and hadn't awakened fully yet...she's such a cute little sleeper.
She had her weekly PT visit yesterday and she is doing really well. We still have to do her exercises several times a day to keep her movement and strength up, but she is responding very well and they are pleased with her progress. She has "graduated" to 10-15 minute intervals in her exersaucer and some time in her Bumbo seat...all this is to help strengthen her core and neck...but also to give her some different views of the world. She loves to be on her belly...but only to sleep! We try to put her on it to get her to lift her head and tone everything up, and she abruptly falls asleep almost without fail.
She's potentially got some big changes coming up. She goes back for another round of check-ups May 6-13. The ENT is first (and sort of the most important this go around) on the 6th. He will scope her and determine if she her vocal cords tone and movement have come back enough for her to be able to attend school and for Brian to go back to work. Her stridor is still present now and then and I'm truly not sure whether she'll get the thumbs up or not...We want to make absolutely certain she can withstand a cold without putting her airway at risk. She also has a neuro follow-up on May 5th (I think) and her very first sb clinic on May 13. She'll get to meet with all her docs in one place there and some for the first time. If all of these go well, she will start school (where Caroline goes) on May 16th.
Sidenote: I "met" the mom of another kid with sb and she says she never capitalizes "spina bifida" because it gives it too much credit and I've decided I'm going to do that too...I like the way she thinks.
Anyway, that's about all that's new in our world...please pray for her in the coming weeks and for the doctors to give us strong direction.
She had her weekly PT visit yesterday and she is doing really well. We still have to do her exercises several times a day to keep her movement and strength up, but she is responding very well and they are pleased with her progress. She has "graduated" to 10-15 minute intervals in her exersaucer and some time in her Bumbo seat...all this is to help strengthen her core and neck...but also to give her some different views of the world. She loves to be on her belly...but only to sleep! We try to put her on it to get her to lift her head and tone everything up, and she abruptly falls asleep almost without fail.
She's potentially got some big changes coming up. She goes back for another round of check-ups May 6-13. The ENT is first (and sort of the most important this go around) on the 6th. He will scope her and determine if she her vocal cords tone and movement have come back enough for her to be able to attend school and for Brian to go back to work. Her stridor is still present now and then and I'm truly not sure whether she'll get the thumbs up or not...We want to make absolutely certain she can withstand a cold without putting her airway at risk. She also has a neuro follow-up on May 5th (I think) and her very first sb clinic on May 13. She'll get to meet with all her docs in one place there and some for the first time. If all of these go well, she will start school (where Caroline goes) on May 16th.
Sidenote: I "met" the mom of another kid with sb and she says she never capitalizes "spina bifida" because it gives it too much credit and I've decided I'm going to do that too...I like the way she thinks.
Anyway, that's about all that's new in our world...please pray for her in the coming weeks and for the doctors to give us strong direction.
Tuesday, March 29, 2011
4 month update
Not too much here....CeCe had her 4 month pedi checkup and is doing great! She's gained about a pound and a half since her last hospital stay and has grown almost 2 inches since January....what a beast! The doctor said he really liked seeing all her leg/ankle/hip/toes movement (we can't hear that enough) and really not too much else to report. It was such a relief not to have the appointment end with an emergency (or soon to be scheduled) hospital visit.
Her doctor also mentioned for the first time that he is on the national SB association board ( you think you know someone!) and he wondered if Brian and I might be interested in starting a Carolinas chapter...it's definitely something we've talked about before and are now considering again with his help. Anyone out there know anything about taking on a huge endeavor like this??? We'd really like to help folks going forward with a place to connect and find answers. Something to think about...
More soon!
Her doctor also mentioned for the first time that he is on the national SB association board ( you think you know someone!) and he wondered if Brian and I might be interested in starting a Carolinas chapter...it's definitely something we've talked about before and are now considering again with his help. Anyone out there know anything about taking on a huge endeavor like this??? We'd really like to help folks going forward with a place to connect and find answers. Something to think about...
More soon!
Subscribe to:
Posts (Atom)