Mommy is flipping out...

Yesterday my mom and I took Regan for his annual X-rays to check his neck. This was the first time that he had ever had a procedure done where I couldn't be in the room.Remember, I'm pregnant!!! So my mom had to go into the room with him. When Regan realized that I wasn't in there he went running to the door screaming MEME!! I stood in the hall way and cried like a baby. I wanted so badly to be in there to help him but had to protect our little baby. It was horrible. When they finally opened the door he was still crying and I just held him and cried too. It was the toughest thing I've ever done to not be where he could make eye contact with me.

We go the call a few minutes ago that every parent dreads. The call that they found something and we need to see a surgeon. Regan has a fusion on C2-C3 and also has Atlantoaxial Instability. AAI occurs in appox 15% of children with Down Syndrome.

Here is some information about it from our favorite website


"AAI denotes increased mobility at the articulation of the first and second cervical vertebrae (atlantoaxial joint). The causes of AAI are not well understood but may include abnormalities of the ligaments that maintain the integrity of the articulation, bony abnormalities of the cervical vertebrae, or both.

In its mildest form, AAI is asymptomatic and is diagnosed using X-rays.....Symptomatic AAI results from subluxation (excessive slippage) that is severe enough to injure the spinal cord, or from dislocation at the atlantoaxial joint.

The neurologic manifestations of symptomatic AAI include easy fatiguability, difficulties in walking, abnormal gait, neck pain, limited neck mobility, torticollis (head tilt), uncoordination and clumsiness, sensory deficits, spasticity, hyperreflexia...and {other spinal cord} signs and symptoms. Such signs and symptoms often remain relatively stable for months or years; occasionally they progress, rarely even to paraplegia, hemiplegia, quadriplegia, or death. Trauma rarely causes the initial appearance or the progression of these symptoms. Nearly all of the individuals who have experienced catastrophic injury to the spinal cord had weeks to years of preceding, less severe neurologic abnormalities..


To say that I'm not flipping out is a lie. I'm worried sick. Not only could this limit Regan's acitivites as far as sports,jumping,and special olympics this could mean spinal cord injury for him. We go to the orthopedic surgeon at Childrens on the 18th. I'm ready to go now!! I need answers and so I'm off to look for information as to what we're facing.

Rant

I refuse to believe that my child will

~Never be able to cook his own meal
~Never know how to use a measuring cup
~Never be able to balance a checkbook
~Never have the joy of having his own place
~Never get the chance to travel without an aide
~Never get to hold a job
~Never get to make decisions for himself
~Never know how how to change a flat tire
~Never know you how to operate a washing machine
~Never know how to use a computer
~Never know how to read above a 1st grade level
~Never be able to do long division

These things among others have been in a book I've been reading lately. I will not limit my child to doing less than I believe he can and will do. Some things might take longer but, to be told that he won't be able to do these things won't work for me. I hope that no parents put limits on their child because of something in these books that are supposed to help parents. Helpful things would to be not to limit your child in any shape, form or fashion.

I'm tossing this book.

Pictures to share

I finally put up Regan's tire swing that my mom bought last Summer. I just now thought he was ready to enjoy it. I love taken Summer pictures in black and white. It just feels so old to me. Regan loves to hang in the tire swing and spin himself around. So I've got some pretty good pictures and just wanted to share them. ENJOY!!




















I've also taken some different picture and wanted to post them also. We picked blueberries over the weekend and I took a picture of Regan putting his hands in the blueberries and its one of my favorite pictures.