October 25, 2012


I had a dream that I found out that I had Chiari.  I was devastated.  I cried.  I didn't know how I was going to function with Chiari for the rest of my life.  I didn't want to have brain surgery.  Then, in my dream, I thought about Ashlyn and her strength.  I dreamt about her having surgery and how brave she was, and that if my daughter could do it, then I could do it.  I wanted to be strong for Ashlyn.

Thankfully, this was all a dream, but it really got me thinking.

Ashlyn has taught us so much during this Chiari journey, but most of all, she has taught us about HOPE.

October 19, 2012

Occupational Therapy

Ashlyn has been going to occupational therapy for a few months now and is doing really well.  The therapist is trying to get Ashlyn accustomed to different situations, movement through space, and proper eating techniques.  The therapist also commented on Ashlyn's low muscle tone.  We thought Ashlyn needed some help with sensory type things but she has really made progress in this area, so the main focus now is EATING.

Eating is a catch 22 at this age, is she just being picky or is there more of an underlying problem?  The therapist wants Ashlyn to see a dentist about her jaw to see if her eating is a sensory or anatomical issue.  For the most part, Ashlyn's diet consists of liquid: 100% juice and Pediasure.  Any other food that Ashlyn consumes, we consider bonus.  About 50% of the time, Ashlyn will chew her food but then spit it out, the other half of the time, she swallows it.  At this point, I don't know if her swallowing is a Chiari issue or not.  Her choking has improved tremendously so that is great!

So, little by little (this seems to be my motto for Ashlyn) we will work on eating, chewing, and swallowing, and getting Ashlyn to gain some weight.

October 11, 2012

6 Months Post Op

I can't believe it has been six months since Ashlyn's Chiari decompression.  I have thought a lot about those days sitting in the hospital and attempting to sleep on the hard floor while Ashlyn screamed in pain, nurses and doctors trying their best to comfort her.

I'm still not sure how I/we got through these days, other than we serve a big God!  I was in such an "autopilot mode" and tried my best to stay strong for Ashlyn, all while needing to be the best advocate for her. 

Truthfully, some days, I grieve this whole process, as reality hits of what Ashlyn and we had to go through just six short months ago.  I was strong then, but some days I feel weak now as I reminisce about those days of my baby daughter having brain surgery.  It was hard.  I wasn't able to feel emotions then, as I had on my "strong face" but now since time has elapsed, emotions are starting to flow a little.  I'm not sure if this is normal, or what other parents go through, or what the technical term is, but this is how I feel.

On a happier note, Ashlyn is doing wonderfully!!  Many people have commented on her progress and we celebrate her growth and development!  Her hair is starting to grow back (as seen in the picture) but she is too quick on her toes for me to get a better picture of her scar.  We cherish each step, smile, word, and giggle!

Yay, Ashlyn!!  Keep fighting, kiddo!