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 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 22, 2011


A friend passed this along to me today....this is the perfect description of raising a special needs child...


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.