I took Carly to get her haircut a week ago. It is so cute on her! We are trying to thicken it up and let the shaved part from surgery catch up. She looks like such a big girl with her big girl cut!

 Carly and daddy taking a nap.

3 year old pictures.

Who loves the sand?

Carly LOVES playing on the swing set but mostly loves playing in the sand. Seems like most of the sand comes into the house with her! I on the other hand hate the sand. 

On a not so fun note....her 3 year check up was quite discouraging. Carly looks great but her weight is terrible. She weighed in at 27.4 (4th %), height of 37.5 inches (50-75th %) and not on the scale for body mass. She needs to start gaining weight soon. You know its not good when the Dr starts throwing around words like feeding tube, hospital stay, IV's.... So operation "Weight Gain" has begun. She is drinking 3 Pediasure drinks a day and then whatever else we can get in her. In 3 months she will be re-evaluated and if there hasn't been sufficient weight gain then she will be referred out to GI and nutrition for their opinion. Eat Carly, EAT!!!

First day of school

Carly had her first day of school today. They switched her to a smaller class since they have so many new students. There are only 5 in her class right now and more will be added each week. I think this will be better for her so that she can get comfortable and have a bit more attention. She did great today and got right into things. She is so outgoing and fearless and I know she will progress and learn quickly! I was able to go grocery shopping and get everything organized before she came home. I waited for her bus outside while I swept the patio. She grew up today, BIG TIME, right before my eyes!

"C'mon mom, let's go to school!" -yep, she said that!

 The walls of the school are painted with the characters from "Brown Bear, Brown Bear".

 Such a big girl standing by the door to her classroom.

 She jumped right into things without hesitation. I even had to beg a goodbye out of her.

 Carly's cubby for her papers and sippy.

 Getting off the bus.

Home from school!

3

Happy birthday to my Carly!

It's really strange-

Yesterday I was in the hospital having her and today she is 3.

Weird.

 March 21, 2008

 March 21, 2009

 March 21, 2010

March 21, 2011

Carly is:

sweet, loving, energetic, moody, dramatic, smart, courageous, happy, witty, determined, funny, kind, strong-willed, shy, outgoing, brave, easy going, and friendly.

She is my miracle!!!

Carly likes:

beating on her little brother, playing with princesses, being with mommy, reading books, Yo Gabba Gabba, giving hugs and kisses, dancing, coloring, looking at pictures, going to the library, playing at the park, watching tv in mommy's bed, singing, and playing with grandpa and grandma.

Bittersweet moments

I had the meeting with preschool today and Carly was accepted! She was eligible in two areas, gross motor and adaptive skills. She tested VERY low with gross motor. As far as speech and cognitive skills go she did very well, testing slightly low to right at average for her age.

Here are her gross motor scores with age equivalence which leaves her in the 5th percentile for her age.
Reflexes- no score
Stationary- 28 months
Locomotion- 17 months
Object manipulation- 23 months

Here are her fine motor scores leaving her in the the 21st percentile for her age.
Grasping- 20 months
Visual/motor integration- 20 months

Here are her scores for adaptive behavior on a scale of 1-30 with the average range being 13-17.
Personal- 9, low adaptive level
Domestic- 12, moderately low adaptive level
Community- 11, moderately low adaptive level

She will be going to the AM class, from 9:50-12:20 tuesday through friday. Her teacher is Ms. Piano. (good name for us don't you think?) Starting out I will be bringing her to school in the morning, which I secretly I'm using for motivation to go to the gym, and she will be taking the bus home. Put your thoughts at ease, she will be in a car seat on the bus. And please, no short bus jokes. She will start March 22nd which is now coming WAY too quickly. Carly is very excited to go to preschool. I know she doesn't really understand what preschool is but I think she hears "school" and wants to be like Cayson. It will be nice to spend some time with Burke by myself but it will be strange not having Carly around. I know this will be a great thing for her but it's just a step closer to her growing up. It was very bittersweet to hear she was accepted and its been somewhat of an emotional day for me. These are all exciting milestones that she is reaching so I am very proud of my big baby girl.

Stay tuned for a very emotional first day of school!

Ice Cream Reward

I took Carly to see the urologist today, which by the way, Dr. Donovan is the BEST pediatric urologist ever!!! He quickly came to the conclusion that Carly has been traumatized by recent experiences and to NEVER, EVER, EVER, EVER go back to Del Webb. The fast that it took 8 attempts to catheterize her infuriates him. You would have thought she was being beaten just having him take a quick peak at her. 

His first concern is that her reflux has gotten worse. She went from grade 2 to grade 3 in a year and having breakthrough infections while on antibiotics. His second concern has to do with her bladder muscles. Carly has difficulty voiding completely and has frequent small voids- he says she has voiding dysfunction. It's not normal and we need to know if it is a muscle issue or pain or fear. 

Because of her Hydrocephalus and Chiari malformation she could have suffered damage to her urinary nerves when her brain was swelling so she needs to be tested for neurogenic bladder- (basically means her bladder muscles aren't working right because of nerve damage). This is normally done through a test in the office called urodynamic testing. Remember how I mentioned Carly won't let anyone touch her? That makes doing this test in the operating room mandatory. The good thing about already being in the OR is that if she tests negative for neurogenic bladder then he will go right in and do the Deflux procedure. Deflux is an implant injection of a gel placed where the bladder and ureter meet to make a bulge so the urine can't flow back up the ureter. It's 68% effective and if it doesn't work and the reflux does not get better then she can still have surgery. The deflux injection is our best option and what we are hoping for. Neurogenic bladder would mean medication with the possibility of it being for the rest of her life. Neurogenic causes incontinence. What 17 year old girl wants to suffer from incontinence!?!

As much as I don't want my little girl to go through another surgical procedure I also don't want her to be on this antibiotic for another year or two or three years while we watch and wait to see if any of this goes away on its own because most likely, it won't! Instead, she will just be a 4 or 5 or 6 year old that is still struggling to be potty trained, will have had many more UTI's and will be loosing kidney function. 

So now we are waiting for her procedures to be scheduled.

After going through another exam and kidney ultrasound I promised Carly ice cream. I think she liked it. AND it made up for me holding her down to have the ultrasound. (picture this...me laying on the table, Carly laying on top of me, one leg wrapped around her legs and both hands pinning her arms down) Both humorous and sad.

She deserved an ice cream!