I feel like I have been inundating this blog with posts about Ashlyn and her medical condition. Rather than clog this blog with all that info, I started a new blog. A blog to inform family and friends of Ashlyn's journey, and also for fellow Chiarians to find support.
I will still update this blog!
Follow the link to my new blog, Chiari Hope, and then you can become a member and/or follow that blog too. You can also follow by email so you can receive updated posts right to your inbox.
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.
Our middle child, also known as Ambria, isn't the healthiest of eaters. She doesn't like fruit or vegetables...AT ALL!
We told her that once she turned 5 (which was last week) she would have to start trying more fruits and vegetables and she agreed to this. So far, she has eaten half a carrot, a bite of broccoli, and a small piece of cucumber. It's a start! We applauded her attempts as she tried to say "I like it" as she raced to the garbage to spit it out.
Ambria decided she likes peanuts and cashews, so I thought maybe I was on to something--trail mix!! I bought some trail mix and Ambria was more than excited to have it for a snack. Every few seconds she came to me and said:
"Mom, I don't like these big things (as she pointed to the almonds)."
"Mom, I don't like these either (as she pointed to the peanuts and cashews)."
"Mom, I don't like these (as she pointed to the raisin)."
We celebrate Mariah's birthday AND Ambria's birthday this week! I cannot believe that Mariah is turning 8 and Ambria is 5!! Before you have children, people will say the old cliche of "time flies" but until you have kids, you really cannot comprehend this saying. Wow, it is true! Where has the time gone?
Birthdays mark a special time for a PARENT. As a mother, I reminisce of the days leading up to labor and delivery, the stay in the hospital, and the first few days at home. I also think about what stage of life we were at...8 years ago...and 5 years ago!!
Last week, we spent a much needed family vacation in Florida and we celebrated the girls' birthdays ALL week. They got spoiled. Beach, pool, Legoland, shopping, cake, ice cream, and lots of presents. Happy Birthday girls!! We love you!!
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!
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.
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!
This blog is about attempting to raise these wonderful, glorious, blessings in this ever changing world. I do not have all the answers. These are just my experiences, my mistakes, my hopes, my struggles, and my joys of RAISING THREE GIRLS.
Life is full of mountains and valleys and I am so blessed to have my three girls, Mariah (11), Ambria (8), and Ashlyn (5) to share joys and sorrows with. Oh, and an added bonus in life--donuts! They are delicious.