Symptoms??

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.

Diagnosis Day Anniversary

THREE Years Ago!!!

Merry Christmas!

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.

Preschool

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!

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!!

Ashlyn is 4!!

Just as silly as ever!!!  Happy Birthday sweet girl!

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!

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!!...

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:

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.

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.

Merry Christmas!

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!

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.

Chiari Awareness Month

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.

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!

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.

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).  So...pink and green presents she got!

Happy 3rd Birthday Sweet Girl!!

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)

5:06am

8:45am

9:40am

11:45am

12:30pm

Post Op Report

5:00pm

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

One Year Ago (One Day Before Brain Surgery)

2:26am

3:34am

Pre Op

Here's to a Good Night

One Year Ago (Two Days Before Brain Surgery)

Hello Duke

The Start to Our Week

Ashlyn at the Beach

MRI Comparison

This is Ashlyn's MRI with Chiari Malformation with a herniation of 10mm.  Very little spinal fluid is flowing into the spinal cord.  As you look at the image, you can see the brain sinking into the spinal cord.

This is Ashlyn's MRI after she had Chiari Decompression Surgery.  The portion toward the top of the image (kinda looks like a white triangle) is where the brain was pushed up, so the spinal fluid could flow freely.  The top vertebrae was also removed and a dura patch was inserted.

 

 

So, these scans might look foreign to many people and it is difficult to explain without being able to literally point out the differences, but it is a MAJOR improvement!  The post op MRI looks fantastic!



Follow Up with Neurosurgeon

Ashlyn had her one year post-op appointment with her neurosurgeon at Duke Children's.  It was great to see Dr. Fuchs again and show him how Ashlyn has grown and developed.  Ashlyn was a little shy and didn't want the nurses or Dr. Fuchs to touch her, despite all of our pep talks to prepare Ashlyn to see the doctor.  Oh well.  The appointment was pretty uneventful, just like we were expecting.  Dr. Fuchs showed us the pre-op and post-op MRI's, which we hadn't seen before so it was really great to have him explain those to us.  Ashlyn had her post-op MRI done six months ago but we hadn't talked about it with Dr. Fuchs.  I was curious as to what the post-op MRI looked like compared to the pre-op MRI.  It was pretty cool to see the brain moved up to where it should be and not sagging down into her spinal cord, blocking spinal fluid.  Awesome!

So, now we don't have to go back the neurosurgeon for another year!  Dr. Fuchs likes to see the little ones that he performed surgery on in another six months, but since Ashlyn is doing so well, we can wait a year!  Thanks again Dr. Fuchs and your team for helping our daughter!!

On the way to Duke

At the doctor

On the way home from Duke

Up next on the blog: Comparison between pre-op and post-op MRI's.

OT

Proudly presenting the newest graduate from Occupational Therapy: Ashlyn Hope!!

What does this mean??  Ashlyn has completed her goals for occupational therapy: her sensory processing has improved, her feeding issues have improved, her fine motor skills are great, and her difficulty "moving through space" has improved.  Awesome!!

What this also means: We do not need to go back to the Children's Hospital for the neurologist, the developmental specialist, the physical therapist, or the occupational therapist!!  Whoa!!  Ashlyn has made major strides (pun intended)!!  She just learned to walk one year ago (at almost 20 months).

We said our good-byes to the therapists, the receptionists, and many others that we have made friends with over the past year or so.  It was a little bitter/sweet as we walked out those doors for the last time.

So, so, so proud of Ashlyn!


Up next: in a few weeks we have Ashlyn's one year post-op appointment with the neurosurgeon at Duke.

One Year Since Life Changing MRI

One year ago we heard the words Chiari Malformation for the first time.  One year ago our lives changed forever with those two words.

Our youngest daughter Ashlyn Hope, was 19 months old and she went in for a MRI due to some developmental delays and favoring of one side of her body.  We were thinking that MAYBE she had a stroke or brain hemorrhage when she was born, but we were shocked to find out differently.

I will always remember the moment I received the phone call from the doctor with the devastating news about Ashlyn.  I was at work and I ran to the office so I could hear the nurse as she spoke.  Tears rolled down my face as I didn't know exactly what the words Chiari Malformation meant other than my daughter had a malformation in her brain and she was being referred to a neurologist and a neurosurgeon.  I remember trying to take notes with my shaky hand as the nurse spelled out Chiari Malformation.  I also spelled out INCURABLE.  I remember trying to phone my husband and explain between sobs the results of Ashlyn's MRI.  I remember calling our families with the devastating news.  I remember coming home to see tears streaming down my husband's face.

Since this day, we have spent many hours at doctor's offices, at various appointments, at more MRI's, physical therapy sessions, occupational therapy sessions, and of course brain surgery.  We have spent many hours in prayer.  We have spent many hours crying.  We have spent countless hours rejoicing.

Ashlyn continues to be our little miracle as she fights this incurable brain malformation.  She is doing AMAZING and no one would ever be able to guess that she had brain surgery.  She continues to grow and develop and amaze us with her contagious laughter and personality.  She is happy and full of HOPE!

One year ago: