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).  So...pink 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)

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).

March 15, 2013

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!


March 5, 2013

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.

February 18, 2013

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.

February 6, 2013

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:


January 22, 2013

Development

Ashlyn met with the developmental specialist and he was very please with her progress!  When Ashlyn was first referred to the specialist when she was about 14 months old, she was behind in her physical and speech milestones by over 6 months.  She has now caught up to other kids her age!!  The doctor does not need to see Ashlyn again unless we have concerns!!

Wahooo!!!  So proud of you, Ashlyn!!  Keep fighting kiddo!!

January 11, 2013

Glasses for Strabismus

Ashlyn's eye continues to cross and the doctors are still unsure if it is related to Chiari or not.  The eye doctor thinks it is probably related, the neurosurgeon doesn't think it is a result of Chiari.  

The eye doctor has seen some improvement with Ashlyn's eye so she wanted to try glasses before doing surgery.  Ashlyn's vision is good but the glasses will help to align her eyes.  They are like really strong bifocal lenses so it might take Ashlyn a little while to adjust to them.  Either way, she looks super cute with her new glasses!


October 25, 2012

Dream

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!

September 17, 2012

Eye Surgery Postponed

Ashlyn had her appointment with the eye doctor last week and I was prepared to hear a surgery date.  However, the doctor wants to wait a little longer in hopes that her eyes will straighten out without surgery.  We are back to using eye drops three times a week--they are similar to a strong dilation in her strong eye, which makes her use her weak eye more.  We will try this once again and hope that it helps.

I guess this is good and bad news.
Good, that Ashlyn might not need eye surgery!!  Awesome!!
Bad, that if we don't see improvement, she will need eye surgery, thus delaying the process.  At this point, I am thinking, lets just get 'er done and be done with surgeries and I will feel like we can move on a little bit.

So, for now, we will just not think about surgery and put our worries on the shelf.