October 25, 2012
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
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
Yay, Ashlyn!! Keep fighting, kiddo!
September 17, 2012
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
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
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
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
July 28, 2012
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
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
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
Congrats Duke Hospital, you deserve it! Thanks for taking such good care of Ashlyn!
July 11, 2012
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
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
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
June 23, 2012
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
June 19, 2012
June 16, 2012
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
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
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
May 19, 2012
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
Thank you Ashlyn for letting me be your mom!
May 8, 2012
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
April 25, 2012
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
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
April 18, 2012
April 17, 2012
April 16, 2012
April 15, 2012
April 14, 2012
April 13, 2012
April 12, 2012
April 11, 2012
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!
April 10, 2012
April 9, 2012
April 8, 2012
April 7, 2012
April 4, 2012
April 3, 2012
April 2, 2012
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
March 31, 2012
March 30, 2012
March 29, 2012
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
March 13, 2012
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
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
February 20, 2012
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!
February 17, 2012
February 9, 2012
Ring, ringMe: Hello?
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.