October 24, 2014

3 Year Post Op Appointment Scheduled

I can't believe I just scheduled Ashlyn's THREE year post op appointment!  Wow, three years!!
Her annual check up with her neurosurgeon is scheduled for March 9.

September 5, 2014


This little pumpkin started preschool this week!!  She was beyond excited!!  
Three afternoons per week, Ashlyn will attend school.  
She was most excited for: the play kitchen.  
Her biggest fear: dragons.

Go get 'em Ashlyn!  We are so proud of you!

August 20, 2014

Ashlyn's Wish Trip

We had an INCREDIBLE time on Ashlyn's Wish Trip!!  It was definitely a dream come true and Ashlyn enjoyed every minute of the trip!  She got to fly on an airplane for the first time, stay in a great villa, go to delicious restaurants, and of course, go to the theme parks!!  Ashlyn's wish was to meet Tinkerbell, and it was a moment we will remember forever!  She was grinning from ear to ear and was in awe of actually getting to hug Tinkerbell.  
The Magic Kingdom was amazing and Ashlyn enjoyed all of the rides and meeting many of the characters, including Tinkerbell, Snow White, Ariel, Anna, and Elsa.  She loved the parades and the fireworks and didn't want to miss out on anything!

We also went to SeaWorld where Ashlyn was able to feed and pet the dolphins, feed the stingrays and seals, and watch all the amazing shows.

We were spoiled at each restaurant that we had reservations at, including Logan's, Hard Rock Cafe, and Bahama Breeze.

The biggest thank you goes out to Kids Wish Network for making Ashlyn's wish come true!!  We celebrated how far Ashlyn has come in her fight against Chiari!!

June 19, 2014

April 24, 2014

Ashlyn is Getting a Wish from Kids Wish Network!!

We are super excited to announce that we received the news a that Ashlyn will be granted a wish from Kids Wish Network!!  We are beyond excited for Ashlyn!!  Ashlyn has been assigned a Wish Coordinator who will continue the wish granting process and we completed a phone interview.  Ashlyn was a little shy talking on the phone but she spoke up enough to say that she wants to meet Tinker Bell!!  She couldn't stop jumping up and down with excitement after we hung up the phone.  Ashlyn has never let her incurable brain condition called Chiari Malformation stop her, she is so full of HOPE and determination!  Thank you Kids Wish Network!

April 11, 2014

TWO Year Brain Surgery Anniversary!

Well, another year has passed since that dreaded surgery day! We are beyond happy to report that Ashlyn continues to do well since her surgery!  We have seen so much growth and improvement in so many of her original symptoms.

Although we are happy with our decision to follow through with Dr. Fuch's surgery recommendation, it only takes a split second for me to remember the flood of emotions.  Scheduling a surgery date, the waiting room, the pre op, the nurses, the smells, Ashlyn's shrill cry of pain, sleeping on the hospital floor, the flood of prayers, the tears, Dr. Fuchs, ICU, surgery morning, singing to Ashlyn in the operating room during her first round of anestesia, Ashlyn's hosptial gowns, walking around the children's floor, hospital food.... and on and on.  It is almost a form of Post Traumatic Stress Disorder for me, and as time goes by, Ashlyn heals and we heal.

We are grateful for Dr. Fuchs and his team, along with all the prayers and support from family and friends!

Again, we are glad that Ashlyn did have brain decompression for her Chiari Malformation!  We continue to hope that she has lasting results from the surgery, and we continue to celebrate all of Ashlyn's growth and healing!  

Here is a pic of Ashlyn with Dr. Fuchs, her pediatric neurosurgeon at Duke Children's. 

Stay tuned for a post regarding some EXCITING news!!...

March 24, 2014

Hanging out at Duke Children's Hospital

A few weeks ago we had Ashlyn's two year post op appointment at Duke, and we had a chance to walk around the beautiful campus of Duke University.  Here are some photos of Ashlyn:

March 7, 2014

Two Year Post Op at Duke

Ashlyn had her TWO year post op at Duke!  Since we live 4 hours away from Duke, we stayed in a hotel the night before Ashlyn's appointment.  She was very excited to sleep at a hotel and go swimming!

Ashlyn went through a full neurological exam, but no MRI.  We had a few concerns that we wanted to discuss: her eye muscles not improving, the interior suture that tried to surface last fall, swallowing issues, and Ashlyn complaining of her legs falling asleep.  Dr. Fuchs discussed these concerns with us and told us what to look for in the future, or symptoms worsening.  He doesn't want to do another MRI unless her symptoms get a lot worse and she complains of headaches.

Overall, Ashlyn did VERY well and passed with flying colors!  We don't have to go back for one year!

Here are a few pics from her appointment:

Ashlyn said, "The scale says I'm getting stronger!"

Getting taller!

The arm squeeze.

The ride home.  Exhausted.

February 7, 2014

Two Years Ago...

I can't believe two years ago we received the phone call from the doctor with the results of Ashlyn's MRI...with the diagnosis. 

Chiari Malformation.

I never thought our lives would change on that day, but they did.  I never thought our baby daughter would have a diagnosis that included the word INCURABLE.

Of course I can remember that day like yesterday and how the day played out.  All the tears that were shed, the hugs that were shared, the prayers that were said, the HOPE that we had.

Two years ago we started a journey.