This will probably prove to be one of the longest posts ever! We are heading to Lizzie's IEP (Individualized Education Program) in the morning, so I put together all the necessary information I could think of. Thank you so much for your continued prayers. Can you believe she will be starting preschool in January?!?

Elizabeth Nichole Ross

My name is Elizabeth, but everybody calls me Lizzie. I was born full term on January 18, 2008, with no difficulty at all. However, within 24 hours I stopped eating and became very lethargic. Another 24 hours later I began having what looked like seizures. So three days after my birth, I was sent to Amarillo, Texas for lots and lots of tests. One week later I was on my way to OU Children’s Hospital for more and more tests. I still do not have a diagnosis, but have had several surgeries:

Tracheotomy: placed 2/15/2008 removed 08/12/2008 I still have a slight hole that I blow air through sometimes. My mom and dad call it my “blowhole.” If it gets slobber or boogers in it, my mom just wipes it away with my bib.

Nissen Fundoplication: placed 2/15/2008 My fundo is not very tight anymore, so I still have acid reflux. Sometimes it’s not so bad, but other times I end up holding my breath until my face turns blue. My body becomes very stiff and I look very hard to the right. When this happens, my mom and dad straighten me as much as possible and wait for it to pass. (It never lasts over 20 seconds.) My parents give me Prilosec every morning to help with this.

Gastrostomy Placement: placed 2/15/2008 removed 10/18/2009 I eat and drink everything orally. I have a giant sweet tooth and I love my daddy’s pancakes with syrup.

Muscle Biopsy: 2/15/2008

I am very far-sighted, so I need to wear my glasses in class. However, when I am finished wearing them, I will let you know by pulling them off any way I can. I have slight nystagmus, but on days when I’m tired, it’s more obvious.

I must be strapped into my chair or stander very well because I am so very hypotonic. I have virtually no head or neck control.

I love music! I love loud music, soft music, Zumba music, lullabies, hymns, songs my mommy makes up… and I love the sound of pianos and people singing. Sometimes I try to sing along, but mostly I just try to dance.

I have my own form of communication that may be hard to understand. I cry for most things, but when I am hungry I say, “Nunny.” When I want my bottle, I will put my arm in mouth and bite on it. When I am through learning, I will look away from you with a look of pure boredom.

I can understand a lot of what you say to me. I can also understand the tone you use. I know you will speak kindly to me, but please tell me what we are doing before we begin.

I am a very healthy little girl. I have no food or medicine allergies. I have slight seasonal allergies, but have only been sick once in the last three years.

I love to be around other children and most adults. I will have days abounding with energy, and days when I am exhausted. Sometimes I only need a little cat nap to bounce back. Some days I need more.

My family would like for me to

1. learn a form of communication – it can even be unique to me

2. gain strength in my muscles

3. use my hands

4. drink from a sippy cup

Stacy, Kelly, Katelyn, Sarah, and Elizabeth Ross