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:

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!!

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!

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.

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.

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!

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.

Eye Surgery Pre-Op

Ashlyn has pre-op for her eye surgery next week.  We will talk to the eye doctor then to get more information and set a date for the operation.

It hasn't hit me yet that Ashlyn will be having another surgery, but at least it isn't as major as Chiari Decompression.  Thinking optimistically...

Chiari Malformation Awareness

Post Op MRI Results

I guess Ashlyn's neurosurgeon was supposed to call last week, but he didn't get around to it, so his secretary called today (I was wishing to talk directly to Dr. Fuchs, but I'm sure he is beyond busy).  She said Dr. Fuchs left a note that said Ashlyn's post op MRI looks good.

Yay, I will take it!!  Awesome!!

We will go back to the neurosurgeon in six months, but she will not need a scan at that time.

Yay, yay, yay!!

Post Op MRI

Ashlyn's second attempt at a Post Op MRI was today, and this time, the sedation worked!  She had to have a brain scan, a flow study, and a c-spine so the scan took an hour and a half, and luckily the sedation held!

Ashlyn did pretty well prior to the scan, not TOO anxious, but she was aware that something not so fun was about to happen.  The nurses blew bubbles to try to distract Ashlyn from the IV but she wasn't too interested.

After the MRI was complete, Ashlyn was pretty groggy and limp for about a half hour.  She then was a little angry, and let everyone know it.  It didn't take too long before Ashlyn calmed down, ate some crackers, and wanted to leave.

Now the images will have to be mailed to Ashlyn's neurosurgeon at Duke since we had the MRI in our hometown.  It will take a few days for him to receive them (snail mail) and review them.  I will await a phone call to discuss the scan.  I am HOPEful for good news!

Swimming!

Ready for the Olympics!

(The scratch on her lip and chin is from falling, but that won't stop her!)

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.

Try, Try, Again

This past Monday, Ashlyn was scheduled for a post op MRI (her 3rd MRI), and usually, the hardest part is denying her food and drink prior to the scan.

This time was no different.  We tried our best to distract Ashlyn and not talk about food or even let her see sippy cup.  Right away, the nurses and doctors were aware of Ashlyn's anxiety and gave her some meds to help calm her.  It worked wonders and she was very relaxed and didn't even squirm when they placed her IV.  Yay!

This time around, the doctor wanted to try a sedation medication called Dex (if I remember correctly) because last time, she woke up right at the end of the scan and they wanted to make sure that she stayed asleep this time.  This type of sedation could be administered by IV and they could keep giving her the meds throughout the scan.

Well, Ashlyn got all set up for the scan and in less than 2 minutes, she woke up.  They had to stop the scan.  I consoled Ashlyn.  They increased her sedation medication.

Ashlyn fell back asleep and they started the scan again.  In less than 2 minutes all the doctors and nurses came back in because Ashlyn's oxygen levels were dropping to 83%.  They stopped the sedation, gave Ashlyn an IV to flush the meds, and put her on oxygen.  The doctor felt that she was stable with the help of oxygen and we could try the scan again even though they stopped the sedation meds.  Well, that didn't work.  Ashlyn woke up in less than a minute.

No luck.  (And of course Ashlyn slept like a rock for FIVE hours after that).

I am bummed.  I was looking forward to this appointment so we could compare before and after MRI's and talk to Dr. Fuchs about concerns regarding Ashlyn.  Not only that, but I'm sad that Ashlyn had to go though all that for nothing.  Now we need to repeat the process.  Ugh.

We did meet with the neurosurgeon but he couldn't say much because he didn't have the MRI to look at.  Darn.  We are hoping to schedule another MRI closer to home and then have a phone conversation with Dr. Fuchs.

So, we didn't get any answers.  It was a long trip for nothing, but I guess that is how it goes sometimes. Ashlyn is our little fighter and she fought her way through the MRI.  She is our 18 pound Heavy Weight Champion that just won't quit.

Follow Up Appointments

Off to Duke Children's Hospital again.

Ashlyn has a follow up MRI on Monday morning and we meet with the neurosurgeon in the afternoon.

HOPEful for good news....

Fussy, Fussy

For the past few weeks, Ashlyn's fussiness returned, just like before her decompression surgery.  Sometimes I feel like we have a colicky baby.

Usually, Ashlyn cries the most when she wakes up in the morning and when she wakes up from her nap.  She will scream and cry for 1-2 hours and nothing will help.  Sometimes she will cry from the time she wakes up from her nap until the time she goes to bed at night. She doesn't want to eat, drink, play, sing, etc.  I will hold her and cuddle her but she still cries so I will set her down and she still cries.  It is frustrating, for all of us.  

I'm not sure if this is a side effect of Chiari or her just not being a morning person.

I'm glad Ashlyn has an appointment with the neurosurgeon in a few days.

Chiari Malformation Image

This is a great graphic of Chiari Malformation if anyone is looking for a way to show others what Chiari looks like

.  

Happy 2nd Birthday Ashlyn!!

Ashlyn definitely deserves to celebrate!  

Hard to think that this time last year, or even this time two years ago, we had no idea what Chiari Malformation even was.  Now, this word "Chiari" is in our vocabulary every day.  Ashlyn will forever be changed but it seems as she turns TWO, she is already determined not to let this stop her!  

Ashlyn is brave.  She is strong.  She is a fighter.  She is full of HOPE!

Happy Birthday sweet baby girl!  Don't ever stop fighting!