Sensory Modulation Disorder

Ashlyn met with the developmental specialist and I explained the sensory problems she has been having.  The doctor diagnosed her with Sensory Modulation Disorder and set up Ashlyn to see an occupation therapist.  Ashlyn will get an OT evaluation in a few weeks.

The doctor also ordered blood work to check Ashlyn's iron levels.  That made for one sad little Ashlyn, but she enjoyed picking a yellow rubber ducky out of the treasure chest.

Random Updates

Ashlyn's crying episodes have tapered off a little, so that makes life better for everyone.  Her walking seems a lot more fluid and she seems to be falling less and less.  Ashlyn also isn't choking as much.  Overall, she is making BIG strides!  Hooray!!

Since her post op MRI wasn't successful a few weeks ago, she FINALLY  got rescheduled for her post op MRI.  Ashlyn will have her post op MRI next week.  I'm hoping and praying that this one goes well.

Ashlyn meets with the developmental specialist later this week.  We haven't seen this doctor since BEFORE she was diagnosed with Chiari.

Ashlyn seems to be having some issues with sensory type stuff, which has always seemed to bother her, but now it seems more pronounced.  She doesn't like sand, water, grass, and other textures and she will say "ow" when she touches them.  Bath time is rough and almost seems painful for her.  Loud noises are a sure trigger for anxiety and her "escape" is to say "nigh, nigh" (night, night) and want to go to bed and/or hide her face.  She also does this for unsafe situations or things that make her uncomfortable.  All this sensory processing stuff is new for me so I have a lot to learn.  I'm interested to see what the developmental specialist has to say about it.

I am thinking Ashlyn is about finished with physical therapy (hooray!!) but the next step is probably some occupational therapy.  One step at a time...

Two Words

Today we were driving home from physical therapy and Ashlyn drifted off to sleep in her car seat as the warm sunlight shone on her through the car window.

I smiled as I looked back at her.

She was sleeping so peacefully.  Not a care in the world.

Two words came to mind as my eyes welled up with tears, "I'm sorry."

Ashlyn, I'm so sorry that Chiari is your bully.  Fight  back, little one!

Duke Hospital

Ashlyn is fortunate to have her pediatric neurosurgeon, Dr. Fuchs, at Duke Children's Hospital.  Although we live four hours away from this medical facility, we feel blessed to be ONLY four hours away from this fantastic hospital.  In a new report from US News, Duke University Medical Center is ranked #8 in the nation!

Congrats Duke Hospital, you deserve it!  Thanks for taking such good care of Ashlyn!

Three Months Post Op

We have had some good days and some not so good days.  I choose to focus on the good days.

I choose to cherish Ashlyn's smile and the pitter patter of her feet.
I choose to remember Ashlyn's accomplishments and how far she has come.
I envy her bravery.

Her laughter is contagious, and so is her big heart.

I celebrate her progress and her HOPE.

Vacation

We just returned from an almost two week vacation to see family and friends.  It was much needed.  It was great to see family that we hadn't seen since before Ashlyn's surgery.  It was comforting.

The changes in surrounding and people was difficult on Ashlyn.  She had a rough time adjusting, and walking in unfamiliar places proved to be difficult.  At home, she is familiar with steps, inclines, and cracks, but new areas are challenging.  Ashlyn wasn't fond of the pool or the beach, and at the beach, she cried most of the time.  This was frustrating for all of us since we were at the pool for 4 days and then at the beach for four days.  Not to mention all the friends and family that wanted to see Ashlyn, but she wasn't having it.

Despite this, the trip was ok.  The two older girls had a blast and Ashlyn did have SOME fun.  Here are a few rare pics of her smiling.