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 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, we can't just say "she does that all the time"...if they don't see it, she can't do 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


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...

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!