We just got home from the hospital and CeCe is doing well. The ENT did her bronch scope and said that all is pretty much the same as the last time he looked in August. Her right cord is still not moving very well, but her left is about full function. He was also able to say that the nerves around that area seems good so that's a positive sign that the right one may still come back.
On to the MRI and neuro. The MRI showed that her syrinx (the fluid in her spinal cord) has not gotten any smaller as we had hoped since her decompression in February. As the neuro said this is not really good or bad news, it's just news. What it means is that they went ahead and changed her shunt setting in hopes that would fix it. Then they will redo her MRI in 6 months (ugggh) and see if that helped. If not, the next thing is to decide if she needs a second shunt (different then she has now) in her spinal cord to remove the excess fluid and not allow it to build up causing loss of function below the site. Not something we want. They also told us that she has a tethered cord...I guess we knew this, but this is the first anyone has said it outloud. Once she starts growing more, the spinal cord will become taut and cause her to lose function below that spot and she'll have to have another surgery to de-tether. All sb folks have this, it's just when it becomes symtomatic that it's a problem.
Sorry this is such a bland post, but it's been a long day. BTW, when they came out to get us when she was in recovery the nurse said..."She's so happy!" That's my girl!
BTW, if you take a look at the calendar, CeCe will be 1 year old in two weeks...holy cow! If you'd like to get her a gift, that's great but we would really love for people to make donations to the sb association instead. Here is the site...
https://www.kintera.org/site/c.liKWL7PLLrF/b.3876151/k.68FB/Tribute__In_Honor_Of/apps/ka/mt/createCard.asp?c=liKWL7PLLrF&b=3876151&en=rmLYJ8OUJbKQIfOVLbKUJjM2LjI1KjO6LuIaKrOeG
Thank you all for your prayers (and positive thoughts!)
Tuesday, November 8, 2011
Monday, November 7, 2011
Tomorrow is another big day...
Just a reminder that CeCe has a pretty big day tomorrow. She is going to have a bronchoscopy at 7:00am and her BIG MRI from 8:00am-11:00ish. We have to be at the hospital at 5:00am....geez. I'll update when I can. thank you in advnace for your prayers!
PS...if this doesn't make you smile today, then nothing will!
PS...if this doesn't make you smile today, then nothing will!
Thursday, October 20, 2011
"They's my MAGIC shoes!"
Thank you Forrest Gump! CeCe got her AFO's (ankle-foot orthotics) yesterday and the cutest little running shoes to go with them. She took to them quickly and you can tell they will really help her to learn to stand properly and distribute her weight and help her to learn to walk. They go from her toes to mid-shin/calf and fit perfectly into her new Keeping Pace running shoes....a company created by a mom with a son with cerebral palsy that got tired of the constant struggle to find shoes that fit over braces. Love companies like that!
CeCe has a few big dates coming up including her sedated MRI on Tuesday, November 8, so please add her to your prayer list. This is a big day for the neurosurgeon to be able to check in on how her Chiari is doing and to keep monitoring the success of her decompression surgery back in February.
If you didn't know already, October is sb Awareness Month. Please note that THIS MONDAY has been designated a National Day of Prayer at noon for families living with sb. Please say a prayer for all these folks...it means so much to the families to know that they are being lifted up. We will also take "positive thoughts", if prayer is not your thing!
CeCe has a few big dates coming up including her sedated MRI on Tuesday, November 8, so please add her to your prayer list. This is a big day for the neurosurgeon to be able to check in on how her Chiari is doing and to keep monitoring the success of her decompression surgery back in February.
If you didn't know already, October is sb Awareness Month. Please note that THIS MONDAY has been designated a National Day of Prayer at noon for families living with sb. Please say a prayer for all these folks...it means so much to the families to know that they are being lifted up. We will also take "positive thoughts", if prayer is not your thing!
Wednesday, October 5, 2011
Friday, September 16, 2011
All Clear!
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!
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!
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.
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