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!
Friday, April 29, 2011
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!
Tuesday, March 22, 2011
Nothing to report!
How's that for a headline! CeCe is doing very well (everybody, knock on wood!). The last of her surgery strips came off today, just in time for her first pictures...ok, ok...her first PROFESSIONAL pictures :)! While her stridor is still there on occasion, a little reminder of where she's been, it's much quieter.
She starts PT at the house tomorrow and we are looking forward to having them come every week so she can keep hitting her milestones. She struggles to hold her head up but we can see progress there already. Oh yeah, and she GIGGLED this week More of and "henh hehn" than a "HAHA"...but music to our ears nonetheless.
Don't tell Brian, but he think he is enjoying his Mr. Mom status. He was very excited to have a playdate at the park yesterday and is looking forward to another one on Thursday. He came home talking about recipes and hair salons! Ok, no he didn't, but I think he really did enjoy the time he spent with another family. Thanks, Tiff!
Check out her new pic to the right....Gooooo CeCeBe!
She starts PT at the house tomorrow and we are looking forward to having them come every week so she can keep hitting her milestones. She struggles to hold her head up but we can see progress there already. Oh yeah, and she GIGGLED this week More of and "henh hehn" than a "HAHA"...but music to our ears nonetheless.
Don't tell Brian, but he think he is enjoying his Mr. Mom status. He was very excited to have a playdate at the park yesterday and is looking forward to another one on Thursday. He came home talking about recipes and hair salons! Ok, no he didn't, but I think he really did enjoy the time he spent with another family. Thanks, Tiff!
Check out her new pic to the right....Gooooo CeCeBe!
Monday, March 14, 2011
Cautiously Optimistic...
Today is a day to give both science and religion a pat on the back! They both came together today and gave CeCe a good, yet cautious, report. And, we'll take that..thank you very much.
Brian reported back from the ENT appointment today (I'm back to work) that the ENT was "very pleased" and "optimistic" about CeCe's progress. The doc scoped her again and he (and Brian) were able to see much better function/movement in her vocal cords then when he scoped her right after her larynx surgery on February 8th. He believes she will return to full capacity and function, but is not there yet. What does that mean? NO TRACH-TALK TODAY!!! He did stress that we are not out of the woods, but that we are on the right path. We still have to be mindful of her eating and swallowing habits as these are the first signs that things maybe going downhill. He (like neuro) can't explain why the stridor is back...just one of those things. By the way, he also does not want to see her back for 3 W-H-O-L-E months! And, neither do we!!! We pray she doesn't have symptoms that push us there more quickly.
I was expressing my frustration for all CeCe's been through to a friend at church who's a nurse this past Sunday...she said something that will stick with me....she said, "the docs try things that have worked on other people's kids and hope they will work for CeCe." And that, my friends, is kind of the definition of "practicing medicine", yeah? It's all about perspective. Thanks, Sallie.
On a sidenote (you know I always have a side note!): Being back to work hasn't been as hard as I thought it would be...Brian has made this transition so much easier just by being the person he is. I treasure all the time we had together as a family these last 3-4 months...but I know our girls are in good, strong, loving hands. But, I miss you guys like crazy!!!
Brian reported back from the ENT appointment today (I'm back to work) that the ENT was "very pleased" and "optimistic" about CeCe's progress. The doc scoped her again and he (and Brian) were able to see much better function/movement in her vocal cords then when he scoped her right after her larynx surgery on February 8th. He believes she will return to full capacity and function, but is not there yet. What does that mean? NO TRACH-TALK TODAY!!! He did stress that we are not out of the woods, but that we are on the right path. We still have to be mindful of her eating and swallowing habits as these are the first signs that things maybe going downhill. He (like neuro) can't explain why the stridor is back...just one of those things. By the way, he also does not want to see her back for 3 W-H-O-L-E months! And, neither do we!!! We pray she doesn't have symptoms that push us there more quickly.
I was expressing my frustration for all CeCe's been through to a friend at church who's a nurse this past Sunday...she said something that will stick with me....she said, "the docs try things that have worked on other people's kids and hope they will work for CeCe." And that, my friends, is kind of the definition of "practicing medicine", yeah? It's all about perspective. Thanks, Sallie.
On a sidenote (you know I always have a side note!): Being back to work hasn't been as hard as I thought it would be...Brian has made this transition so much easier just by being the person he is. I treasure all the time we had together as a family these last 3-4 months...but I know our girls are in good, strong, loving hands. But, I miss you guys like crazy!!!
Tuesday, March 8, 2011
We've had a bit of a scare.
I didn't post anything on Saturday about this, but we heard CeCe's stridor return a bit that night, and it scared the heck out of us. In addition, her incision started to look a little bit different and we were worried it was the beginning of an infection.
Brian took her to the neuro today and he said the incision looked that way becasue the surgical steri strips were irritating it...really no big deal.
About the stridor...he did say that it "may come and go" and does not neccessarily mean the Chiari is symptomatic (i.e. that we are back where we started) but we do have to be on alert for all of the same things we were before to make sure we don't miss any signs or symptoms. He said that kids can have a stridor until they outgrow it at 2-3 years of age but that we still can't rule out a trachesotomy and/or feeding tube. Just like everything else wth SB...wait...and...see.
She has a follow-up appointment with her ENT on Monday and he may decide to scope her again then. She hates it of course, but she is so tolerent each and every time. Let's all hope he says she's rocking it too!
Brian took her to the neuro today and he said the incision looked that way becasue the surgical steri strips were irritating it...really no big deal.
About the stridor...he did say that it "may come and go" and does not neccessarily mean the Chiari is symptomatic (i.e. that we are back where we started) but we do have to be on alert for all of the same things we were before to make sure we don't miss any signs or symptoms. He said that kids can have a stridor until they outgrow it at 2-3 years of age but that we still can't rule out a trachesotomy and/or feeding tube. Just like everything else wth SB...wait...and...see.
She has a follow-up appointment with her ENT on Monday and he may decide to scope her again then. She hates it of course, but she is so tolerent each and every time. Let's all hope he says she's rocking it too!
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