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!
Tuesday, December 6, 2011
Wednesday, November 30, 2011
Got a hankerin' for a Philly Steak & Cheese?
Me too! It's almost time to head back to Philly! What the #$%@? How did that happen? What a year we've had! CeCe just marked her first birthday last week and what a blessed event it was...so many of those that have looked after her (& us) all together in one place to celebrate this sweet baby girl. Thank you to all of you there both in body and spirit...we would not be here today with such a great outlook without the constant care of all of you!
Moving on...I've started taking a better view on her last report (MRI and ENT) and now we are ready to kick some CHOP butt coming up!
CeCe's PT looked up the testing protocol that they will be using to measure her mental and developmental progress (Bayley Scales of Infant Development)and she can rock them all but one! It's going to be a strange testing period in that we are in the room with her but not allowed to encourage her...she has to be able to do everything on her own...what kid does that? And they also won't take into consideration any parent input...like, we can't just say "she does that all the time"...if they don't see it, she can't do it...is their philosophy....whatever...we know the truth, right?!?
She is also going to have her annual Urodynamics testing which will test her bladder pressures and make sure she is voiding completely. This is such a common issues for sb kids but she's been doing really well all year without a single UTI and perfect ultrasounds of her kidneys. Brian and I have both been praying on this one the most and humbly ask you to do the same.
They will also being covering her back closure scar so that the researchers don't have any bias as to whether she had fetal or post natal surgery and we are not allowed to say ANYTHING that might lead them to think one way or another. As a sidenote, the study recently got a grant to EXTEND the follow-up. So in additon to our return here soon, and at 30 months...we will also be returning sometime between ages 5-7...that's GREAT! The more research, the better!
I'll update when I can from Philly!
Moving on...I've started taking a better view on her last report (MRI and ENT) and now we are ready to kick some CHOP butt coming up!
CeCe's PT looked up the testing protocol that they will be using to measure her mental and developmental progress (Bayley Scales of Infant Development)and she can rock them all but one! It's going to be a strange testing period in that we are in the room with her but not allowed to encourage her...she has to be able to do everything on her own...what kid does that? And they also won't take into consideration any parent input...like, we can't just say "she does that all the time"...if they don't see it, she can't do it...is their philosophy....whatever...we know the truth, right?!?
She is also going to have her annual Urodynamics testing which will test her bladder pressures and make sure she is voiding completely. This is such a common issues for sb kids but she's been doing really well all year without a single UTI and perfect ultrasounds of her kidneys. Brian and I have both been praying on this one the most and humbly ask you to do the same.
They will also being covering her back closure scar so that the researchers don't have any bias as to whether she had fetal or post natal surgery and we are not allowed to say ANYTHING that might lead them to think one way or another. As a sidenote, the study recently got a grant to EXTEND the follow-up. So in additon to our return here soon, and at 30 months...we will also be returning sometime between ages 5-7...that's GREAT! The more research, the better!
I'll update when I can from Philly!
Tuesday, November 8, 2011
MRI...complete.
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!)
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!)
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!
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