"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11


Potty Training.......

From My Mommy:

So we have started potty training.... some days are great and then some days it seems as though Nola has forgotten the whole concept. She get so excited when she pee-pees on the potty! She starts pointing to her mouth because she knows she gets some sweet-tarts! they are in a pretty jar on the mantle.
She is too smart and was a little stinker tonight! She said she needed to potty right after we laid down to go to bed. She ran into the bathroom and pee-peed in the potty. It wasn't the normal amount, but I didn't think anything of it. She ate her sweet-tarts and then not 30 seconds after she finished them, she went back to the potty and pee-peed again! I think she only did alittle the first time to get double the treat! That little stinker!

By the way- Pull-Ups or Easy-Ups whichever brand you buy - are so expensive! Everytime Nola pee-pees in one I think, "Great, there's another 50 cents!" A pack of 25 is $10! I'm ready for big girl panties!


Getting the word out

From my Mommy:

We are so excited about the topic chosen by Christy, a nursing major who is a new friend of ours! She has chosen to do her project on hydrocephalus! Hydrocephalus is not a rare condition, but many people are unaware of what hydrocephalus is. Here are some facts about hydrocephalus you may not know!

-Hydrocephalus can be present at birth which is known as congenital or as a result from a brain injury or trauma known as acquired.

-Hydrocephalus occurs 1 in 500 births.

-There is NO cure for hydrocephalus. Hydrocephalus is treated by the placement of a shunt which diverts the fluid from the head to the belly or the heart.

-Nola had her first shunt placement at 4 days old. Revision #1 was August 2008 (10 months old) and Revision #2 was June 2009 (20 months old).

As many of you know, Nola was born with hydrocephalus. She was diagnosed at about 25 weeks gestation. Nola has VP shunt which means her fluid is diverted to her belly. As a result of her hydrocephalus, she has hearing loss. She now has cochlear implants that give her the ability to hear. She is perfect! :)



Surgery #5

I went to the doctor today to see Dr. Hoehn. She looked at my eye and although MOSD has been wonderful about patching, it just hasn't done the trick. I will be having eye surgery on July 8 to correct the turning of my left eye. This will be a one hour surgery and if everything goes as planned, I will be coming home the same afternoon. Mommy & Daddy told Dr. Hoehn that I do not recover well from anesthesia. Hopefully this will be the fix for my eye.


Grant's Farm

So serious....

The animals are so close!

Feeding the baby goats

I only thought I wanted to ride the carrousel... we had to get off before it started- I was scared!

My size horse

The Magic House

Future Detective?

I was thinking hard!

Crawling like a worm

I think this was my favorite!

First female President!!

Sand fun!

Playing in the water.Mommy & Daddy had to take my implants off- Don't want them to get wet!

Maybe a future artist!

St. Louis Zoo

Mommy & Daddy rented a zoo stroller because it was TOO HOT for them to carry me!

My favorite animal - an elephant!

Mommy & Daddy really enjoyed this! It was the butterfly house.

The orangutan!

The chimp was so tired!

Ready to go home!

Watch out road!!

Family Vacation

The rubber ball pit!

Block fun in Toddler Town

Feeding the Stingrays

Mommy and Daddy took me to st. Louis for a few days of fun! We went to Grant's Farm and fed the baby goats, the City Museum and Aquarium, the zoo, and the Magic House!


Special Needs

From my Mommy:

Loving and Parenting a child with special needs:

celebrating the small things

cringing when someone asks is she walking/talking yet

seeing beauty that you couldn't before

knowing the best route to the emergency room

getting an amateur medical degree

being able to spout off the signs of shunt malfunction in your sleep

learning to deal with the stares or questions

using acronyms with ease- CT, MRI, ST, IEP, IFSP, NS, ENT

being able to not only pronounce, but spell big medical words- hydrocephalus, colloid cyst, cochlear implants

hoping for the best, but always prepared for the worst

realizing you were wrong about things

changing your priorities

learning that you were never really in control

being amazed everyday at all the things accomplished that you were terrified would never be
It's all been worth it Nola - We love you more than you can imagine.
*I borrowed this list from another hydrocephalus mom (sherrilee.wordpress.com) .... and added a few of my own as well*

5 years!

From my Mommy...

Jonathan and I celebrated our 5 year anniversary on May 28. I cannot believe it has already been 5 years! We have had quite a journey over these last five years, but these challenges have only brought us closer. I looked up what you are supposed to get your spouse for your five year anniversary......it said wood. That is not exciting. Jonathan said our anniversary present was our new house since the framing is made of .... wood!