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!