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!

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.

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...

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!

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.

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.

A Day at the Park

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

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.

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.

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.

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.

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!

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.

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!

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.

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!

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.

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...

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.

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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.

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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.

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.

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!

**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!

Global Developmental Delays

In the fall, Ashlyn was diagnosed with Global Developmental Delays, which is a long term that means she is behind in many of her developmental milestones. The specialist confirmed that she was at least six months behind (she wasn't rolling over or walking, etc). Thankfully, all of her blood work and genetics testing came back normal, but that leaves a big fat question mark as to the cause for her delays.

The doctor wanted Ashlyn to begin physical therapy, speech therapy, and see a feeding team. With much thought and conversation with other therapists, we decided to start with JUST physical therapy so Ashlyn didn't get overwhelmed.

Ashlyn currently goes to physical therapy once a week at the children's hospital and HATES it!! She cries and doesn't let go of me, which makes it difficult for the therapists to do their job. I feel bad for Ashlyn AND the therapists so we are brainstorming what would be best for Ashlyn at this point. They want to strengthen her right leg and loosen up her hips so we are doing exercises at home to help with this.

Since the appointment with the specialist, we have seen some progress with Ashlyn. She is almost 18 months old now and has rolled over three times and has taken a few steps! We celebrated! We were hoping that after watching Ashlyn take a few steps that she would be walking by Christmas, but we don't know if this will become a reality.

The doctors also recommended that we teach Ashlyn some basic sign language and she has made some progress with this as well.

So, what's next?

Ashlyn goes back to the specialist in January so he can monitor and make note of any progress. Until then, we will still continue some sort of physical therapy and look into speech therapy within a few months.

Thanks for your continued thoughts and prayers for little Ashlyn!