February 20, 2012

Duke Children's Hospital

Well, we received some good news today (if you want to call it that). Ashlyn got in to see the pediatric neurosurgeon at Duke Children's Hospital NEXT WEEK! I thought for sure it would be a few months out since pediatric neurosurgeons are few and far between. Thank goodness for no waiting list!

So, I will try to get some sleep between now and then but it might be difficult to do.

February 17, 2012

Chiari Malformation

We visited the neurosurgeon yesterday in hopes of some answers regarding Ashlyn's brain malformation. I told my husband that we should dress nicely because we were meeting a genius. :)

Going into the appointment, I was prepared for the doctor to say "no surgery," "surgery," or "let's wait and see." I was a nervous wreck and I had butterflies in my stomach all day. Ashlyn looked adorable dressed in pink with her little pigtails and she quickly melted the hearts of other patients and nurses that saw her toddling around.

The surgeon told us that Ashlyn's brain reaches down to her first vertebrae (in other words, it is NOT supposed to be like that). She has a Chiari One Malformation and it is 10mm. He told us the risks of Ashlyn having surgery and the risks of Ashlyn NOT having surgery.

The doctor was very nice BUT he treats more adult patients than children. He only sees Chiari Malformation in children 5-6 times a year and does 1-2 surgeries for those children. (Which we didn't think was a very high rate). The doctor referred us to a pediatric neurosurgeon at Duke who knows more about Chiari and sees it more often. We are hoping to have more of our questions answered there.

Now we get to wait some more...

February 9, 2012

MRI Results

Ring, ring

Me: Hello?

Nurse: Hi Jamie. This is the nurse from the doctor's office. We have Ashlyn's MRI results. It seems that she has a condition called Chiari Malformations in her brain. The bottom part of her brain is lower than it should be. The doctor is going to refer Ashlyn to a neurologist and a neurosurgeon to see if they want to do surgery or not. It is a mild case, but the doctor still needs to refer her out to have her brain looked at more.

Me: Silence.

That was not the result we were expecting. I slowly dropped to the floor, covered my mouth in shock, and tears rolled down my face. I was at work so I called my husband with the unfortunate news and tried to speak slowly and clearly between sobs. I could hear his silence as tears streamed down his face.


Here is a brief description of Chiari Malformation: (from kidshealth.org)

Chiari (pronounced key-are-ee) malformation is a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to protrude into the space normally occupied by the spinal cord. Some children are born with the condition, and others develop it as they grow.

Chiari malformation sometimes happens because the space at the back of the skull, where the cerebellum sits above the spine, is too small or is unusually shaped. These "cramped quarters" squeeze the cerebellum and even part of the brain stem, which controls the nerves in the face and neck, down through the foramen magnum (a funnel-like hole below the skull through which only the spinal cord usually passes).

The pressure caused by Chiari malformation on the cerebellum, brain stem, and spinal cord can keep them from working correctly. It can also block the movement of cerebrospinal fluid (CSF), the liquid that surrounds the brain and spinal cord and protects them from injury. When CSF doesn't flow properly, it can build up in the brain and spinal cord and block communication of the brain's messages to the body.

It took a while for the initial shock to wear off, and now we seem to be going through different stages of grief, denial, acceptance, more grief etc. Our hearts are so heavy and we grieve for our little Ashlyn. We now await more doctor appointments with the pediatric neurologist and the neurosurgeon. She has an appointment next week with a neurosurgeon so we will know more then. We have hundreds of questions for the doctors as we try to make the best decisions we can for the best outcome.

We are humbled by the outpouring of love and support! I will try to post on this blog as we get new information to keep friends and family updated.

February 8, 2012


Ashlyn went for her MRI early Monday morning. She was all smiles walking through the hospital, saying hello to everyone and melting their hearts.

She hated getting the IV and really fought the anesthetic so they actually had to give her more drugs to knock her out. She is a tough one!

Afterward, she was a little groggy but bounced back quickly. We are glad the MRI is over!

Here is a picture of Ashlyn BEFORE the IV.