May 21, 2015

Another Appointment with the Pediatric Opthalmologist

Two months ago, Ashlyn had an appointment with her pediatric opthalmologist.  For more details read this post.  Her doctor wanted to see her again to monitor her eye crossing and eye dilation.  So, back we went.  

I was figuring it was going to be a pretty uneventful appointment.  

Not so much.  

In less than two months, Ashlyn's eyes have continued to be dilated for the majority of the day and they are crossing more than before.  The doctor asked if Ashlyn was having any seizures, which my reply was, "I don't think so," but of course it got me wondering.  

We are glad that Ashlyn's recent MRI came back good so that is a starting point.  The eye doctor wants us to start patching her eye again for two hours each day.  They also ordered a stronger prescription for her glasses to help her eye crossing.

Ashlyn's doctor does not want to do surgery on her eyes for fear of over-correcting.  The doctor also feels that her eye issues are associated with Chiari (in which, Ashlyn's neurosurgeon feels the issues are not connected).

We are moving half way across the country in a few weeks.  This means changing to all new doctors.  I was hoping that this eye appointment would go well so we could wait a little longer before having to get a check up with a new doctor, but she will need to be seen again in three months.  I'm also nervous because this has been Ashlyn's eye doctor since she was six months old, she knows Ashlyn's history and her medical case.  It's hard knowing that if the doctor was starting to track an issue and now we have to change docs.  Darn.

I know who Ashlyn's new pediatric opthalmologist will be, so hopefully it will be a good fit.

So, overall, it could be worse, but not the news I was hoping for.

Two steps forward, one step back.

Ashlyn's new glasses.

On the way home from the eye doctor.  Wiped out.

May 7, 2015


We traveled four hours back to Duke Children's Hospital for Ashlyn's MRI.  She hasn't had an MRI for three years so I was a little nervous how the results would look, but I was hopeful. 

The last time we tried to have a scan at Duke, they sedated her with Precedex but Ashlyn wasn't in a deep enough sleep so they had to give her more.  Giving her more Dex resulted in a increased heart rate and her oxygen dropped and they had to stop the scan.  I relayed these concerns to the nurse and doctor this time around.  

For this MRI, the doctor wanted to try to administer Dex through Ashlyn's nose, which would mean, no pokes. (It was a little like a flu mist).  If Ashlyn woke during the scan, then the doctor would use Ketamine, in the form of a shot in her upper thigh, which Ashlyn did end up needing.

Waiting for the sedation to kick in...

After the hour and a half scan, Ashlyn was VERY sleepy and it took a long time for her to wake up.  She ate a few fishy crackers, with her eyes closed, and we were on our way to talk to her neurosurgeon for the results.

Ashlyn continued to sleep in my arms throughout the appointment with Dr. Fuchs.  But, we received great news!!  Ashlyn's scan looked wonderful.  Her brain is right where it should be and the spinal fluid is flowing great as well.  Awesome!!

Dr. Fuchs recommended that Ashlyn return to see her neurologist regarding her headaches.  At this time, we will hold off on that.  Her headaches aren't horrible and I don't want her on medication unless her headaches get unbearable.  She is getting one or two headaches a week, so if that frequency increases, we will see the neurologist.

So, we were on our way, with great news!  Ashlyn continued to sleep and a few hours later she said her belly hurt and she ended up vomiting because of the sedation.  After that, she felt much better and there were no other side effects.

Ashlyn won't need to see the neurosurgeon for one more year!!

March 12, 2015

Three Year Post Op Appointment

Hello THREE Year post op appointment!!

We traveled to Duke Children's Hospital to meet with Ashlyn's neurosurgeon, Dr. Fuchs.  Ashlyn did really well for the check up and they did a full neurological exam.

We expressed our concerns of headaches, choking, and eyes being dilated (as well as what Ashlyn's pediatric opthamologist had said).  Dr. Fuchs thought that Ashlyn should get get another MRI with flow study to check things out.

I'm not too worried...yet.  I think the scan will look ok and I will be surprised if anything shows up.  She hasn't had an MRI for three years so it will be nice to see the scan to make sure everything looks the way it should.

We will go back to Duke in May for the MRI and then we will meet with Dr. Fuchs after the scan.

February 27, 2015

Pediatric Opthamologist

I called Ashlyn's eye doctor with concerns about her eyes crossing more and being dilated 80% of the day.  The doctor wanted to see Ashlyn right away.

Ashlyn's optic nerves look good and there is no fluid around the nerves.  This is good news.

Her doctor wasn't sure if her eyes being dilated was a signal from her brain that pressure is starting to build.  The doctor was glad that we have Ashlyn's three year post op check up at Duke in a few weeks so her surgeon can check things out.

February 18, 2015


I've been observing a few Chiari symptoms lately.  I'm not sure if they are symptoms or just side effects of the Chiari.

Ashlyn has been starting to have headaches.  I'm not sure if this is new or she is just able to tell us now that her head hurts.  She says the pain is in the back of her head.  They are random and not related to time of day, being tired, or strenuous activity.  One night she went to bed and said she had a headache and she woke up the next day and told me that she still had a headache.  They aren't "scream her head off, bang her head" kind of pain, but it makes me raise an eyebrow.  I know, headaches happen, but when your child has Chiari, things are different.

Ashlyn has been gagging/choking 1/2x a day on her saliva.  She's choked on raw carrots as well and now she is scared to eat them.

Ashlyn's eyes have been dilated about 80% of the day.  Weird.  Her eyes have also been crossing a little more.  Symptom or side effect, I don't know.

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.

October 14, 2013

TinySuperhero Ashlyn!

Introducing Super Ashlyn!!!  

A big thank you to TinySuperheroes for making an amazing cape for Ashlyn!  TinySuperheroes empowers extraordinary kids-one cape at a time.  They send capes to children who exemplify strength and determination as they overcome illness and disability.  Ashlyn is definitely a superhero in our eyes!!

Ashlyn was very excited to get a surprise package in the mail that was just for her.  She opened her cape and didn't take it off except to drink chocolate milk because she didn't want to spill on her cape. :)  She even wants her Super Ashlyn cape laid on top of her blankets on her bed at nighttime.  Thank you TinySuperheroes for making Ashlyn smile!

October 7, 2013

Two Year Post Op Scheduled

I called Ashlyn's neurosurgeon at Duke to schedule her two year post op appointment.  Wow, that seems weird to say, "two year post op!"  So, hoping that nothing goes wrong between now and then, we will plan on making the trek out to Duke in March.

September 11, 2013

Returning Symptoms?

Ashlyn's gag reflex has been pretty bad lately.  She has been vomiting about once a day, which doesn't help her weight gaining issues.  She hasn't gained an OUNCE in over 4 months!

Of course I'm a little nervous and on edge.  I'm wondering about her vomiting being a symptom of her Chiari showing its ugly face again.

I'm a little anxious.

September 3, 2013

Scary Day

Last week, Ashlyn came into our bedroom in the morning when she woke up, just like every other morning.  I greeted her and noticed that she was touching the back of her head.  I took a closer look and Ashlyn's incision was all red, swollen, and had a bulge at the top of it!!  I jumped out of bed and had my husband look at it as well.  My heart started beating fast.  I called Ashlyn's primary care physician first and he called me back within twenty minutes.  He was concerned that she was having a CSF leak (and that was my main concern as well).  That, of course, was worst case scenario.  Her doctor was able to get us in to see him within a few hours.

I also called Ashlyn's neurosurgeon and left a detailed phone message and waited for them to call back.

Both doctors said that they thought an interior suture was trying to surface.  She was put on an antibiotic to ward off any infection for the time being.  The surgeon said to look for a clear or white suture and if it surfaced, to pull it out.  YIKES!

Well, so far, no suture has surfaced.  Her incision site looks much better and the redness and swelling are going away.

I really thought 16 months after surgery, we would be in the clear of anything like this.  Her incision site was looking great, but wow, that was scary!

August 18, 2013

Summer Recap

I had one goal for this summer: Enjoy this season with our girls! 

We ran in the sprinkler, explored creeks, splashed in rivers, jumped in lakes, swam in pools, and danced in the rain. We took road trips, visited family, played with old friends, and made new friends. We ate ice cream, homemade popsicles, and let watermelon juice drip down our elbows. We hiked new trails, saw waterfalls, collected bugs, and caught fireflies. (and of course there were tantrums, melt downs, and sisterly fights along the way just to keep things real). 

I hope our girls will remember this amazing summer as much as I will, and I am pretty sure I can say: Mission Accomplished.

June 19, 2013

Birthday Girl

This girl deserves to celebrate!!

I asked Ashlyn what she wanted for her birthday, and her response: "Pink and Green presents!"  (her two favorite colors). and green presents she got!

Happy 3rd Birthday Sweet Girl!!

April 11, 2013

Time to Celebrate!

ONE Year Since Brain Surgery!

Wow.  Just wow.

I've been reminiscing a lot this week as I remembered where and what we were doing one year ago, how I was feeling, what Ashlyn was going through, thinking about doctors, nurses, waiting rooms, PICU rooms, hospital food, sleeping on floors, tears, prayers, support, and HOPE!

And then I also have been thinking about how much progress Ashlyn has made over the past year: recovered from decompression surgery, MRI's, doctor appointments, trips to Duke, finished physical therapy, started and finished occupational therapy, and not to mention all of her physical development!

And then I think about what the future holds for Ashlyn: excited that she can have a "normal" childhood (HOPEfully free from any Chiari pain or symptoms) and HOPEful that her surgery from one year ago will be the only decompression surgery she will need.

I'm tearful thinking of the past, present, and future.  Ashlyn is a picture of inspiration, determination, and HOPE.  She is a fighter.  She is a Chiari warrior.  She will not let this incurable brain disorder slow her down!  We are blessed with an amazing little girl and thankful to the Lord for all he has given her and us!

One Year Ago (Brain Surgery Day)






Post Op Report


(For post op reports from one year ago, including day by day recovery updates, please see the blog archive).