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.

September 7, 2012

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...

August 20, 2012

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!!

August 3, 2012

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!

August 2, 2012

Swimming!

Ready for the Olympics!


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

July 28, 2012

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.

July 25, 2012

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...


July 23, 2012

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!

July 17, 2012

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!

July 11, 2012

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.

July 9, 2012

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.


June 27, 2012

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.

June 24, 2012

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....

June 23, 2012

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.

June 22, 2012

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
.  

June 19, 2012

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!


June 16, 2012

Eye Surgery

Ashlyn went to the eye doctor yesterday and we discussed her strabismus (eye crossing) and problems with depth perception.  Ashlyn was referred to an eye doctor when she was 4 months old because her left eye was crossing a little.  Since then, we have tried patching Ashlyn's eye and also eye drops but her eye still turns in at random times.

We noticed problems with Ashlyn's depth perception a few months ago when she started sitting down to step over cracks and ducking through doorways.  We aren't sure if this contributes to Ashlyn's coordination, but my guess is that it would be difficult to walk without a good sense depth perception.

Ashlyn's eye doctor feels that she needs eye surgery.  Obviously the hope is that this will help both the strabismus and her depth perception.  The surgery will be about an hour and a half long and the doctor will perform surgery on both eyes.  At this time, we have not set a date for the procedure, but we will probably wait a few months.

June 11, 2012

Side Effects of Chiari?

Ashlyn didn't have the best day today.  She has been falling more and more often, and today it seemed like she was on the floor more than she was standing.

She has also been choking more and more.  She doesn't choke so badly that she needs the heimlich, but it seems like she is back to choking on liquids and solids again.

The amount that Ashlyn has been falling and choking seems like the same amount since before her surgery.  I'm trying to stay optimistic (and maybe her coordination is due to her depth perception).  Obviously, the hope in the long run, is that the surgery will help prevent pain and headaches.  I am just glad that we go back to see the neurosurgeon in a few weeks.

June 10, 2012

A Few Updates

Ashlyn had a weight check last week and she hasn't gained an OUNCE in over 3 months.  She is almost 2 and weighs 18.4.

Her iron was also a little low.

She has an appointment this week with her eye doctor to look at her strabismus (eye crossing) again and also possible problems with her depth perception.  We have noticed, along with Ashlyn's physcial therapist, that Ashlyn might have some issues with her depth perception.  This could attribute to her lack of coordination as well.  I'm interested to see what the doctor has to say.

Ashlyn was going to physical therapy once a week and now since she is doing so well, we are going to try going to therapy once a month!

Ashlyn is very active and quite the talker!  She learns new words each day!

May 28, 2012

6 Weeks Post Op


Except for her battle scar, you would never know that she had brain surgery!  

May 19, 2012

Shenanigans

When I'm not looking, Ashlyn is up to no good...


In reality though, we are secretly celebrating that Ashlyn climbed on the table. :)  This is a GOOD thing when Ashlyn has been in physical therapy for six months, working on leg tone and climbing, etc.  This means progress.

I love Ashlyn's "oh no, I got caught" look on her face!

Shhh, don't tell Ashlyn that we were proud of her. :)

May 13, 2012

Extra Special Mother's Day

This Mother's Day, I am celebrating a little more than usual.  Ashlyn is our little miracle and I am so grateful.  I am blessed to be her mother!  Hard to think that a month ago was her surgery.  It feels great to be on the OTHER side of the surgery.


Thank you Ashlyn for letting me be your mom!

May 8, 2012

Post Op Check-Up

Ashlyn had a follow up appointment with her family doctor last week.  (The neurosurgeon arranged this so we didn't have to travel 4 hours back to Duke Children's Hospital).

Ashlyn hasn't seen this doctor since January, and this was the doctor that first suggested we get an MRI.  (Thank you doctor!)  The doctor was very encouraged to see the progress that Ashlyn has made since January!  He was interested in our journey since we last saw him, as he has read all the reports.  He was also interested in the Chiari Malformation because this is his first case.  I guess he will always remember Ashlyn now. :)

Ashlyn had another great check-up, her incision looks good, and she has recovered quickly.  Awesome!

Looks like we won't have too many more doctor's appointments until the end of June when Ashlyn goes back to Duke for follow up with the neurosurgeon and another MRI.

April 29, 2012

A Special Dance

Three days after Ashlyn's brain surgery, she was free from almost all IVs and wires so we took her for a little walk around the hospital.  I found Ashlyn and her daddy having a special moment....


Melts.my.heart.

April 25, 2012

Pediatric Neurologist

Ashlyn had an appointment today with the pediatric neurologist.  Back in February, when she was diagnosed with Chiari Malformation, she was referred to a neurologist and a neurosurgeon.  Today was the earliest date we could get in to see the neurologist, but to tell you the truth, after seeing the neurosurgeon and already having surgery, I wasn't quite sure what to expect at the appointment.

The doctor got some information on Ashlyn's background and diagnoses, and then did a full neurological exam.  The doctor also explained Ashlyn's original MRI.

The neurologist said that Ashlyn seems to be doing wonderfully!!  She passed the neurological exam and the doctor doesn't need to see her back unless we have future concerns!!

Wahoo, great news!!



.

April 21, 2012

It's A Good Day!

Well, I think it is safe to say that we have our Ashlyn back!  She is doing great and is back to her old self again!

She hasn't had any Tylenol for three days now, she is eating well, and is sleeping better at night.

Ashlyn goes back to physical therapy this week and also has an appointment with the pediatric neurologist.

April 19, 2012

Bath Time!

Ashlyn had her first "real" bath last night since before surgery. It made me nervous getting her incision wet, but the doctor said it was ok.

Ashlyn found it relaxing to sit in the warm water and I was as gentle as I could be when I washed her hair.

Taking a real bath might seem unimportant to some people, but again, we celebrate the small steps in Ashlyn's recovery.

Hooray for clean baby!

April 18, 2012

One Week Post Op

I can't believe one week ago today Ashlyn had brain surgery! I will always remember that day, and the gut wrenching feeling in my stomach as we sat in the waiting room.

One week ago, Ashlyn could hardly open her eyes, she couldn't sit up, she had a catheter, she was on heart monitors and pain meds around the clock. TODAY, she is walking, laughing, eating, and talking up a storm.

Progress. Slowly but surely.

Ashlyn is still waking up a few times at night and her fussiness comes and goes throughout the day. I can tell when the Tylenol or Motrin wears off, as Ashlyn gets crabby and she doesn't want to turn her head and has a stiff neck. Ashlyn will touch her head and say "ow" a few times a day and isn't a fan of laying down to get her diaper changed because I think it causes head pain or pressure.

We were able to take off the bandage on the back of Ashlyn's head. Instead of stitches or staples, the doctor used glue, so you can really only see a line of glue on her head. The glue will eventually flake off, which, of course, is much easier than removing staples.

So, all in all, HUGE progress from a week ago!

April 17, 2012

Our Week in Pictures


After the MRI, Ashlyn couldn't get "juuuuice" fast enough.
She picked pink sunglasses from the prize box.


Getting ready for surgery



Getting ready to go into the operating room


Last kisses and prayer before surgery


One hour after Chiari Decompression surgery


Cuddling in ICU


Incision


Happy to hold my princess


Ashlyn's older sisters came to visit


Ashlyn sleeping with the teddy bear that her sisters gave her


All clean after a sponge bath


Incision

April 16, 2012

Home Sweet Home?

I feel like we have a newborn baby in the house again.

Ashlyn woke up last night at 2:30am, 3:30am, and 4:30am. My husband and I took turns getting up with Ashlyn and holding her and rocking her.

She has been pretty fussy today. If she is awake, she is crying or screaming. Luckily, the weather is nice so we can go outdoors to distract Ashlyn as much as possible. She hasn't eaten too much today but what she has eaten, she has kept down.

We like Tylenol right now. Tylenol is Ashlyn's friend.

April 15, 2012

We're Home!

Wahoo, Ashlyn got discharged today!

The neurosurgeon wanted to make sure Ashlyn could keep some food down this morning before allowing us to go home, since Ashlyn threw up three times yesterday. The doc wanted her to eat some breakfast and lunch before discharging us. Ashlyn still didn't eat too much, but we were still able to go home! Yipee!

Ashlyn slept most of the four hour car ride home. She is a little fussy but her only method of pain management is Tylenol and Motrin. The doctor changed the dressing from Ashlyn's incision so we were able to take a good look at it. It looks really good!

So, now recovery at home starts. Ashlyn will continue physical therapy and will have her incision checked in about ten days. She has an appointment with the neurologist next week. She will also have a follow up MRI in about six weeks.

I will keep updating this blog during the recovery process and I will post some more pictures soon. Thanks so much for thoughts and prayers and continue to pray for Ashlyn as she heals.

April 14, 2012

Recovery - Day 3

11:00pm

Ashlyn has TONS of energy! She isn't asleep yet.

She got her IV out of her foot so now she can walk more comfortably. So, walking she did! We walked the halls all night long! She is walking slowly and cautiously, but she seems pretty proud of herself.

Go Ashlyn!

Recovery-Day 3

12:00pm

Ashlyn is in much better spirits this morning! She is trying to talk and is a lot more alert. She isn't a fan of any of the nurses, doctors, or therapists, and won't even look at them. She is ready to bust out of here!

We have had a few setbacks this morning. Ashlyn tried to eat some waffles and threw up right afterward. So much for the waffles.

Later, we tried to stand her on her feet and she threw up again. So, getting hooked back up to the IV. Boo!

Ashlyn has been awake for the longest amount of time since before surgery (3 hours). She is exhausted and ready for a nap now.

Again, some forward progress and some setbacks. All in all, so far a MUCH better day than yesterday.

Recovery-Day 3

8:00am

Ashlyn slept great last night and my husband and I got 11 hours of sleep! Thank you Lord! I was emotionally and physically exhausted after yesterday, and I had a few meltdowns. Ashlyn had a rough day and screamed all day. It feels horrible that I can't take away Ashlyn's pain and discomfort and I feel so helpless. Her recovery process is going s.l.o.w.l.y.

Despite the crying and screaming episodes, Ashlyn did make some progress yesterday. She drank some more fluids and finally at a few Teddy Grahams last night! She no longer has a fever and her heart rate is normal! We were able to take Ashlyn for a little walk around the pediatric floor which helped to calm her down.

We celebrate the little things at this point, like wet diapers and eating one Teddy Graham.

Today's plan is for Ashlyn to keep eating and drinking, take out the IV, and start physical therapy. If she has a good day, the doctor said we MIGHT be discharged tomorrow!!

Go, Ashlyn, go!

April 13, 2012

Recovery-Day 2

11:30am

My husband and I took turns between sleeping on a cot and sleeping on the floor last night. Not really Holiday Inn, but at least we were close to Ashlyn. I think she would have slept through the night except for the nurses checking on her, which made her wake up. My husband and I took turns consoling her.

She seems to be keeping down small amounts of fluids, but isn't interested in food yet. She was awake a few times this morning for about a half hour each time. Unfortunately her IV came out so she needs to get a new one placed. Boo! She still needs a few rounds of antibiotics, fluids, and pain meds through her IV otherwise she could just do without it.

Ashlyn is still uneasy sitting up and needs assistance to stay upright. We will focus on the standing and walking later.

A few steps forward, a few steps back. Little by little...

April 12, 2012

Recovery-Day 1

9:30pm

Ashlyn's juice found its way back up, and unfortunately her favorite blankie (and my jeans) got the bad end of the deal.

Bring on the anti-nausea medication!

A Father's Love

My husband wrote a blog post about his emotions regarding Ashlyn's surgery.

You can read it here.

A Few Pictures

Ashlyn getting ready for surgery


Me getting ready to go into the operating room with Ashlyn


First glimpse of Ashlyn after surgery


Daddy holding sweet Ashlyn while she sleeps in the ICU


Ashlyn's incision, 24 hours after Chiari Decompression Surgery

Recovery-Day 1

5:00pm

We have seen some improvement today! While I was skyping with my parents, Ashlyn opened her eyes as she responded to their voices. She was trying to gaze through her swollen eye lids to look at the computer. It was a really great moment! She drank a half cup of juice and cried a little. She touched her head and said her first word in two days... "owww!" and then was back to sleep for about 5 more hours.

For the most part, Ashlyn just wants to be left alone. She either wants to sleep in the crib or be held while she snoozes. She gets pretty upset when the nurses mess with her.

The doctors are still monitoring her heart rate as it is still elevated, but it seems to be going down a little so that is great news! Ashlyn has a slight fever that comes and goes, so the docs are keeping their eye on that too.

Ashlyn's sisters, Mariah and Ambria, came up to visit this afternoon. Ashlyn tried to open her eyes in response to their voices as they sang to her. It was so sweet!

Ashlyn was also moved out of ICU!! Yay!! Thank you Lord! She still has monitors on but only one IV now.

She was awake for about a half hour, drank some more juice, and then back to sleep.

It has been a pretty quiet day and we are hoping for a quiet night too...

Recovery-Day 1

9:00am

Ashlyn did pretty well last night. She slept all night and my husband and I were able to get some rest too.

Ashlyn's heart rate continues to be elevated. They did an EKG in the middle of the night and today she will be seen by a pediatric cardiologist. Her blood pressure looks better so the docs are just hoping that her heart rate resolves itself.

We are hoping to leave the ICU and be moved to a regular room later today.

April 11, 2012

5:00pm--Surgery Day

Ashlyn isn't responding well to the pain meds. The nurses have tried various meds but Ashlyn is still screaming in pain. It is so hard to see her like this. My heart is breaking. My husband or I have to be holding her, but even then, she is still upset. I guess I would be too if my head just got cut open.

Ashlyn's heart rate is still high and her blood pressure is high too. Please keep praying.

Post Op Report

Dr. Fuchs, the neurosurgeon, was very pleased with how the surgery went. He said it was a very necessary surgery because when he made the incision, her brain was bulging out. Crazy! The doctor was successful at doing everything he wanted to do and completed the dura patch.

New info:

dura - thick outer layer covering the brain and spinal cord

duraplasty - surgical procedure where a patch is sewn into the dura

graft - material, or tissue, surgically implanted into a body part to replace or repair a defect

This part of surgery was necessary to make more space for Ashlyn's brain. There are different ways to create a patch and so I asked Dr. Fuchs what he used. He used a piece of the outer covering of a human heart!! WHAT!!?? That is amazing!! Sorry if this sounds pretty graphic. So, we are extra grateful for the donor for the new patch inside of Ashlyn's head! I'm not sure who to thank, but Thank You!

There are the main detail from our post op report with the neurosurgeon. We are so glad that it went well. Thank you Lord!


12:30pm-Surgery Day

Ashlyn was sleeping on her back when we first saw her in the ICU. Her eyes were swollen and she had lots of wires and tubes coming from her. We weren't shocked because the doctors and nurses prepared us for this. My husband and I started talking to Ashlyn and rubbing her hands and she tried to peer out of her swollen eye lids to see us.

Within a few minutes, Ashlyn started screaming and sat up quickly. She was pretty upset that someone cut her head open.

Morphine please!!

11:45am-Surgery Day

Ashlyn's surgery is done!! It was a success, all went well and she is headed to the ICU. We are anxious to see her in about an hour.

Thank you for your thoughts and prayers!!

9:40am-Surgery Day

Just got the call that the doctor started the surgery. It was a long hour waiting to hear that they got started. They had to place all her IV's, prep her head, etc.

Now we wait 3 more hours.

8:45am-Surgery Day

Ashlyn did pretty good this morning. She was grumpy from being woken up early, but she didn't have too many meltdowns due to hunger or thirst. She only asked for "nack" and "juuuice" a few times.

The nurses were great with her and tried to keep her smiling.

We met with the neurosurgeon right away and he marked the back of Ashlyn's head where he will do the incision. We also met with the team of anesthesiologists that will be beside Ashlyn the whole surgery.

I was able to walk with Ashlyn to the OR and hold her while she got her first round of anesthesia. I held her tight and sang her favorite song "This Little Light of Mine" until she fell asleep.

Now we wait to get the "Start Call" saying that the surgeon has started....

5:06am

I'm awake. Time to get up and get the day started. My stomach is in knots and butterflies all at the same time. Having mixed emotions.

I will post updates as time allows and as we get new information.

Again, we are humbled by the outpouring of love and support!

April 10, 2012

Here's to a Good Night...

Ashlyn had a nice, warm bath, is drinking some juice and eating fishy crackers. We are all getting ready for bed. It will be an early morning and a long day tomorrow.


Ronald McDonald House

Checked in to Ronald McDonald House. Trying to relax a little.

Pre Op

It was a long day of appointments. We were in doctor's offices for three and a half hours today.

The neurosurgeon discussed Ashlyn's MRI from yesterday. There haven't been any changes from a few months ago. The spinal fluid isn't flowing as it should. The brain is still sinking into her spinal cord.

She has a pre-syrinx (aka a small pouch of fluid forming in her spinal cord), but not large enough to have to do any special surgical procedure on. We are grateful for this.

The neurosurgeon also explained the surgery a little more. The incision will be about 3 inches long, and he will remove a small portion of her skull. He will also remove a piece of her first vertebrae about the size of a silver dollar. He will cauterize the end of her brain that is sinking too low. The surgeon will put some sort of patch to make more room for Ashlyn's brain.

Me or my husband might be able to go into the operating room with Ashlyn tomorrow and hold her while she gets sedated. We have to check with the anesthesiologist about this in the morning.

Ashlyn got some blood drawn, which she didn't like too much. Her arm was numb but she hated being held down. She is feisty.

Someone also talked with us about what to expect before, during, and after surgery. This was helpful to me since I am so detail oriented. It was a lot of information but it was good for both me and my husband.

We have to be at the hospital tomorrow at 7:00am. Ashlyn's surgery is scheduled for 8:45am, and my in-laws are coming to sit with us.

3:34am

I still can't sleep.

Nerves are setting in.

2:26am

I can't sleep.

Listening to my sweet baby girl breathe and praying for her while she sleeps peacefully.

April 9, 2012

The Start to our Week

I was hoping today's MRI would go better than the one Ashlyn had a few months ago. Nope. Ugh, it was rough.

Ashlyn was beyond hungry and kept yelling "nack, nack. Juuuice" and we couldn't do anything about it to satisfy her needs. We practiced the art of distraction, but to no avail and the melt down started as soon as we went in with the nurse. (She couldn't eat breakfast and had to stop drinking two hours before the MRI).

The good news is that Ashlyn didn't have to get an IV this time, they gave her some medicine by mouth instead. Of course she spit half of it out all over me, but at least it worked. It was a long 20 minutes before she fell asleep.

My husband and I were able to go into the MRI room with Ashlyn, which was a VERY loud 45 minutes for us while they performed the test. We just kept hoping and praying that Ashlyn would stay asleep and she did! She woke up RIGHT as they were finishing the test. Perfect!

Ashlyn woke up in a great mood and acted like nothing happened. She started babbling to the doctors and was excited to finally get juice and crackers. She picked out some pink sunglasses from the prize box and sported them the rest of the day.

So, it was a brutal morning watching Ashlyn scream, but once the MRI started, everything got easier. We relaxed the rest of the day and are hoping to get a good night's rest before two more appointments tomorrow.

Hello Duke

We arrived last night to our home away from home for the next week.

Hoping and praying for the best...

April 8, 2012

Appointments

Just trying to keep everyone posted:

Ashlyn has an MRI Monday morning at 11:00.

We meet with Dr. Fuchs, the pediatric neurosurgeon, Tuesday at 10:00.

Ashlyn has pre-op Tuesday at 11:00.

Easter

In the midst of everything, we hope to take a break and focus on Easter today and celebrate. It is because of the true meaning of Easter that we have HOPE!

April 7, 2012

Overwhelmed

The flood of emotions are starting....

I was a teary mess yesterday and didn't know if I was coming or going.

I can't sleep.

I am an organizer and until the house is clean and we are packed, I will feel like there is still too much to do. I'm trying to still be fully present for the girls, but it is difficult as I am running around like a crazy woman.

The older girls are feeling the stress too and are already saying they don't want us to leave. That makes my heart sad, so I am trying to pay extra attention to them. We went to a bonfire with friends last night. It was nice to relax a little and watch the girls run and play.

The doctors are starting to call with appointment reminders. Thanks for the reminders. I don't think I can forget.

I am truly humbled by all the prayers and support. This brings me to tears (and I don't cry very easily).

I don't have an appetite (so I bought some donuts to help cure this).

I got to skype with my family back in Michigan and they got to see Ashlyn one last time before surgery. That makes me happy and sad.

My house is a glorious mess. I hate that.

The reality of Ashlyn's brain surgery is here. It is happening.

So, the randomness of this post is how I am feeling. All over the place.

That's all.


April 4, 2012

Family Ties

Ashlyn's oldest sister, Mariah, couldn't sleep last night. She overheard us talking about the surgery while she was laying in bed. She stumbled out of the darkness, squinting her eyes from the bright light.

I asked Mariah what she was feeling. She said she was sad and mad about Ashlyn's surgery.

She is mad at the doctors because they are going to hurt Ashlyn and "cut her head open." I explained to her that the doctors are helping Ashlyn, but that is difficult for an 8 year old to comprehend.

Mariah is still sad that they have to shave some of Ashlyn's hair, so I said that is will be ok and the hair will grow back.

This whole experience is difficult for a child to understand.

After we received news about the surgery about a month ago, we explained to the two older girls that Ashlyn's brain is too low and the doctors need to help fix it. We showed the girls the MRI to help explain Ashlyn's condition.

This journey has been tough on the older girls as well since all three girls are so close. Love, love, love my girls.

April 3, 2012

A Day at the Park

I wanted to get a few pictures of Ashlyn before some of her hair gets shaved off next week.

April 2, 2012

More Testing

Monday, Ashlyn will go in for a few more tests at Duke. The first is another MRI to see if she has a syrinx. The first MRI wasn't low enough to see if this exists or not so they have to repeat the MRI. Here is a brief description:

Syringomyelia (sih-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst (syrinx) within your spinal cord. Over time, the cyst may enlarge, damaging your spinal cord and causing pain, weakness and stiffness, among other symptoms.

Syringomyelia has several possible causes, though the majority of syringomyelia cases are associated with Chiari malformation, a condition in which brain tissue protrudes into your spinal canal. Other causes of syringomyelia include spinal cord tumors, spinal cord injuries and damage caused by inflammation around your spinal cord.

The pediatric neurosurgeon also wants to do a test to see how the spinal fluid is flowing. The first MRI showed some blockage with the fluid, but this test will be more specific.

Depending on the results of the MRI and the flow of the spinal fluid, the surgeon might have to adapt the surgery a little. We will know more next Tuesday when we get the results and meet with the doctor.

April 1, 2012

Let the Countdown Begin

We leave for Duke Children's Hospital in ONE week. Ahhhh!! Ashlyn's surgery isn't until Wednesday, but she has more MRI's, doctor appointments, and pre op, so we need to be there two days before surgery.

This week will be full of packing and preparing to be gone for a week, last minute errands, and making arrangements for the two older girls while we are away.

I am starting to lose sleep.

March 31, 2012

Good News!

Ashlyn has been going to physical therapy once a week at the Children's Hospital. Ashlyn's therapist wanted to evaluate her again to have a base line before she goes into surgery since we have no idea what will happen post op.

Well....when Ashlyn first began physical therapy, she was about 7 months behind, now she is only ONE month behind!!! Wahoo! She has only been in physical therapy for about 5 months, so that is a HUGE jump. There are still a few areas to work on and her left leg is still stronger than her right, but progress for sure! I was one proud momma!

Ashlyn has been a little fighter since she has been born.

Keep on keepin' on.

March 30, 2012

A Rough Day

Ashlyn had a difficult day today as she kept fighting with her own coordination. She kept falling all day and couldn't completely figure out how to put one foot in front of the other. One fall included a bloody bottom lip, bloody tooth and gums, bruised upper lip, and a little bloody nose. Poor girl.

Try, try, again.

Tomorrow is a new day.

March 29, 2012

Previous Posts

The posts that are below are from my other blog, Raising Three Girls. I just copied and pasted the posts that were about Ashlyn and her development and medical issues thus far.

If you would like to read more about Ashlyn's journey, read on...

Welcome to My New Blog!

Welcome to my new blog about Ashlyn's journey with Chiari One Malformation. She is 21 months old and was diagnosed with this brain condition a few months ago. She is scheduled to have surgery in April.

This blog will help to inform family and friends about Ashlyn and also for other people that know someone with Chiari to find support.

Thanks for stopping by!

March 28, 2012

Trying to Prepare for Surgery

Ashlyn's surgery date is two weeks away. Each day I am getting more and more nervous. I'm not sure if I can ever be prepared for what is about to happen, but I am trying to stay calm. Calm is a 'relative' term at this point.

I spoke with another mother of a young child that also had Chiari Decompression surgery. It was nice to be able to relate a little through our journey. Unfortunately, this other child had major complications from the surgery. The mother did not want to scare me, but it did a little. I was really protecting my thoughts (with God's help) of not thinking about complications and negative affects that Ashlyn COULD experience. I'm not sure if I am just being naive, but I am only thinking about pre op, the surgery, and recovery, and then will get our Ashlyn back, better than ever.

I'm sad. I'm nervous. I'm scared.

March 13, 2012

Ronald McDonald House

You know the little donation boxes that you see at random restaurants and shopping centers for Ronald McDonald House Charities? Well, we have passed these donation boxes many times, threw in some loose change or a few dollars here and there.

We received a call last week from the Ronald McDonald House saying that we got referred to them since Ashlyn is having surgery and will be in ICU. Wow! Another surreal moment of "I've heard of Ronald McDonald Houses and seen the donation boxes, now WE will be staying there!"

We will be staying at the Ronald McDonald House for at least three nights, two night before the surgery and then we will stay there as long as Ashlyn is in the ICU, so at least one more night.

Thank you for all that you do for families and children Ronald McDonald House Charities!

March 11, 2012

Preparing for Decompression Surgery

The reality of Ashlyn's brain surgery is becoming just that, more of a reality. Her surgery date is exactly a month away and we've been trying to prepare ourselves as much as we can (if that is even possible).

I like to be prepared, as opposed to facing the "unknown." At this point, I am trying to brace myself for what Ashlyn will look like after surgery. I've been watching YouTube videos of kids as they recover from Chiari Decompression surgery.

I know I will feel helpless.

We've been trying to get video footage of Ashlyn so we can remember her "pre" surgery characteristics that make Ashlyn, Ashlyn.

I don't know if I will ever be "ready," but ready or not, it is happening.

March 3, 2012

Surgery is Scheduled

We met with the pediatric neurosurgeon at Duke Children's Hospital this week. We have nothing but wonderful things to say about Dr. Fuchs and his team as he met with us for over an hour explaining Ashlyn's brain condition. He sat there with printouts of her MRI and showed us what Ashlyn's brain looks like and how it is SUPPOSED to look.

Here is a quick summary: Ashlyn's brain is too low and is being squeezed into her spinal cord, which in turn, is starting to block the flow of spinal fluid. The risk of NOT having surgery involves a chance of losing feeling in her arms, hands, legs, and feet, which she will never regain that feeling if she loses it, thus becoming disabled. She was born with this condition and it was not caused by labor and delivery.

After seeing Ashlyn's MRI, the doctor was more than confident that surgery is a must and he has only seen good things come from it. We did not think that her condition was so serious until Dr. Fuchs explained it to us. He did not want to wait even a few months for her surgery. We feel confident in the surgery because the doctor feels confident.

Dr. Fuchs explained the surgery to us, which is technically called a Chiari Decompression. He will make an incision in the back of her head and will remove Ashlyn's first vertebrae and push her brain back up a little so the spinal fluid can get through. Also, the part of her brain that is being squeezed doesn't have much blood flow, so once the doctor releases that pressure, he said he can instantly see that part of the brain start to pulsate again. In essence, the surgery makes more room for the brain.

Ashlyn needs another MRI before surgery to check on a few more things and depending on the results of this, the doctor might have to do a few more procedures in the surgery.

The doctor feels that this will help Ashlyn's coordination and she will be able to catch up physically to other children her age. There will be no long term side affects and she will be able to play sports and jump and run for the rest of her life.

The surgery lasts at least 2 1/2 hours and then Ashlyn will go to the ICU for a day or two followed by a few days in the hospital. She will begin physical therapy in the hospital and then continue when we get home. Recovery is estimated at about four weeks.

It was pretty surreal as I sat there having to schedule my daughter's brain surgery. Never in my life would I have dreamed of this for any of my children. I wish I could take the pain for Ashlyn but we are grateful that she won't remember it. It was difficult to have to explain some of this to the older sisters as they are already concerned for Ashlyn (especially that she has to have some of her hair shaved off). The anxiety and sleepless nights have already begun and we are already praying for Dr. Fuchs and his team. Surgery is scheduled for April 11.

We are humbled by the continuation of prayers and support! Thank you, thank you, thank you! We are truly grateful!

February 20, 2012

Duke Children's Hospital


Well, we received some good news today (if you want to call it that). Ashlyn got in to see the pediatric neurosurgeon at Duke Children's Hospital NEXT WEEK! I thought for sure it would be a few months out since pediatric neurosurgeons are few and far between. Thank goodness for no waiting list!

So, I will try to get some sleep between now and then but it might be difficult to do.

February 17, 2012

Chiari Malformation

We visited the neurosurgeon yesterday in hopes of some answers regarding Ashlyn's brain malformation. I told my husband that we should dress nicely because we were meeting a genius. :)

Going into the appointment, I was prepared for the doctor to say "no surgery," "surgery," or "let's wait and see." I was a nervous wreck and I had butterflies in my stomach all day. Ashlyn looked adorable dressed in pink with her little pigtails and she quickly melted the hearts of other patients and nurses that saw her toddling around.

The surgeon told us that Ashlyn's brain reaches down to her first vertebrae (in other words, it is NOT supposed to be like that). She has a Chiari One Malformation and it is 10mm. He told us the risks of Ashlyn having surgery and the risks of Ashlyn NOT having surgery.

The doctor was very nice BUT he treats more adult patients than children. He only sees Chiari Malformation in children 5-6 times a year and does 1-2 surgeries for those children. (Which we didn't think was a very high rate). The doctor referred us to a pediatric neurosurgeon at Duke who knows more about Chiari and sees it more often. We are hoping to have more of our questions answered there.

Now we get to wait some more...

February 9, 2012

MRI Results

Ring, ring

Me: Hello?

Nurse: Hi Jamie. This is the nurse from the doctor's office. We have Ashlyn's MRI results. It seems that she has a condition called Chiari Malformations in her brain. The bottom part of her brain is lower than it should be. The doctor is going to refer Ashlyn to a neurologist and a neurosurgeon to see if they want to do surgery or not. It is a mild case, but the doctor still needs to refer her out to have her brain looked at more.

Me: Silence.

That was not the result we were expecting. I slowly dropped to the floor, covered my mouth in shock, and tears rolled down my face. I was at work so I called my husband with the unfortunate news and tried to speak slowly and clearly between sobs. I could hear his silence as tears streamed down his face.

*************

Here is a brief description of Chiari Malformation: (from kidshealth.org)

Chiari (pronounced key-are-ee) malformation is a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to protrude into the space normally occupied by the spinal cord. Some children are born with the condition, and others develop it as they grow.

Chiari malformation sometimes happens because the space at the back of the skull, where the cerebellum sits above the spine, is too small or is unusually shaped. These "cramped quarters" squeeze the cerebellum and even part of the brain stem, which controls the nerves in the face and neck, down through the foramen magnum (a funnel-like hole below the skull through which only the spinal cord usually passes).


The pressure caused by Chiari malformation on the cerebellum, brain stem, and spinal cord can keep them from working correctly. It can also block the movement of cerebrospinal fluid (CSF), the liquid that surrounds the brain and spinal cord and protects them from injury. When CSF doesn't flow properly, it can build up in the brain and spinal cord and block communication of the brain's messages to the body.
***********************

It took a while for the initial shock to wear off, and now we seem to be going through different stages of grief, denial, acceptance, more grief etc. Our hearts are so heavy and we grieve for our little Ashlyn. We now await more doctor appointments with the pediatric neurologist and the neurosurgeon. She has an appointment next week with a neurosurgeon so we will know more then. We have hundreds of questions for the doctors as we try to make the best decisions we can for the best outcome.

We are humbled by the outpouring of love and support! I will try to post on this blog as we get new information to keep friends and family updated.


February 8, 2012

MRI Day

Ashlyn went for her MRI early Monday morning. She was all smiles walking through the hospital, saying hello to everyone and melting their hearts.

She hated getting the IV and really fought the anesthetic so they actually had to give her more drugs to knock her out. She is a tough one!

Afterward, she was a little groggy but bounced back quickly. We are glad the MRI is over!

Here is a picture of Ashlyn BEFORE the IV.


January 31, 2012

A Few Steps Forward

A few steps forward:

**Ashlyn is walking!! She is 19 1/2 months now and has been exploring her new skill. (She can walk straight too, unlike the video where she just wanted to walk in circles). We are excited to celebrate this milestone with Ashlyn and the older sisters are so proud of her!
video

**She also went back to her specialist (the doctor that diagnosed her with Global Developmental Delays) and he said she has progressed two months in development! She is now at a 11/12 month level. We also celebrate this, as she is making progress with her development!
**She is really starting to exercise her language and baby babble. It is too darn cute to hear her try to repeat sounds. I am still waiting to hear "mama."

A few steps back:

**Ashlyn's strabismus (eye crossing) has reappeared so she is back on eye drops to help correct the problem.
**One of her doctors also found some deformity in her toes. We are not sure at this time about this new found issue. It could correct itself, or not.
**Despite Ashlyn's progress, three out of three of her doctors still have some concerns so they are recommending her to get an MRI. Ashlyn favors her left side, which just could mean she is a lefty or there is more of an underlying problem. The doctors want to see if she had a stroke, either in the womb or after delivery. They want to make sure there was not a brain hemorrhage. She is scheduled to get her MRI next week. Am I scared? A little. Am I worried? A little.

Her little cutie patootie smile and expressions keep us upbeat, and we are grateful for her progress thus far! Ashlyn is such a blessing to our family!