December 14, 2013
October 14, 2013
TinySuperhero Ashlyn!
Introducing Super Ashlyn!!!
A big thank you to TinySuperheroes for making an amazing cape for Ashlyn! TinySuperheroes empowers extraordinary kids-one cape at a time. They send capes to children who exemplify strength and determination as they overcome illness and disability. Ashlyn is definitely a superhero in our eyes!!
Ashlyn was very excited to get a surprise package in the mail that was just for her. She opened her cape and didn't take it off except to drink chocolate milk because she didn't want to spill on her cape. :) She even wants her Super Ashlyn cape laid on top of her blankets on her bed at nighttime. Thank you TinySuperheroes for making Ashlyn smile!
October 7, 2013
Two Year Post Op Scheduled
I called Ashlyn's neurosurgeon at Duke to schedule her two year post op appointment. Wow, that seems weird to say, "two year post op!" So, hoping that nothing goes wrong between now and then, we will plan on making the trek out to Duke in March.
September 18, 2013
September 11, 2013
Returning Symptoms?
Ashlyn's gag reflex has been pretty bad lately. She has been vomiting about once a day, which doesn't help her weight gaining issues. She hasn't gained an OUNCE in over 4 months!
Of course I'm a little nervous and on edge. I'm wondering about her vomiting being a symptom of her Chiari showing its ugly face again.
I'm a little anxious.
Of course I'm a little nervous and on edge. I'm wondering about her vomiting being a symptom of her Chiari showing its ugly face again.
I'm a little anxious.
September 3, 2013
Scary Day
Last week, Ashlyn came into our bedroom in the morning when she woke up, just like every other morning. I greeted her and noticed that she was touching the back of her head. I took a closer look and Ashlyn's incision was all red, swollen, and had a bulge at the top of it!! I jumped out of bed and had my husband look at it as well. My heart started beating fast. I called Ashlyn's primary care physician first and he called me back within twenty minutes. He was concerned that she was having a CSF leak (and that was my main concern as well). That, of course, was worst case scenario. Her doctor was able to get us in to see him within a few hours.
I also called Ashlyn's neurosurgeon and left a detailed phone message and waited for them to call back.
Both doctors said that they thought an interior suture was trying to surface. She was put on an antibiotic to ward off any infection for the time being. The surgeon said to look for a clear or white suture and if it surfaced, to pull it out. YIKES!
Well, so far, no suture has surfaced. Her incision site looks much better and the redness and swelling are going away.
I really thought 16 months after surgery, we would be in the clear of anything like this. Her incision site was looking great, but wow, that was scary!
August 18, 2013
Summer Recap
I had one goal for this summer: Enjoy this season with our girls!
We ran in the sprinkler, explored creeks, splashed in rivers, jumped in lakes, swam in pools, and danced in the rain. We took road trips, visited family, played with old friends, and made new friends. We ate ice cream, homemade popsicles, and let watermelon juice drip down our elbows. We hiked new trails, saw waterfalls, collected bugs, and caught fireflies. (and of course there were tantrums, melt downs, and sisterly fights along the way just to keep things real).
I hope our girls will remember this amazing summer as much as I will, and I am pretty sure I can say: Mission Accomplished.
We ran in the sprinkler, explored creeks, splashed in rivers, jumped in lakes, swam in pools, and danced in the rain. We took road trips, visited family, played with old friends, and made new friends. We ate ice cream, homemade popsicles, and let watermelon juice drip down our elbows. We hiked new trails, saw waterfalls, collected bugs, and caught fireflies. (and of course there were tantrums, melt downs, and sisterly fights along the way just to keep things real).
I hope our girls will remember this amazing summer as much as I will, and I am pretty sure I can say: Mission Accomplished.
June 19, 2013
Birthday Girl
This girl deserves to celebrate!!
I asked Ashlyn what she wanted for her birthday, and her response: "Pink and Green presents!" (her two favorite colors). So...pink and green presents she got!
Happy 3rd Birthday Sweet Girl!!
April 11, 2013
ONE Year Since Brain Surgery!
Wow. Just wow.
I've been reminiscing a lot this week as I remembered where and what we were doing one year ago, how I was feeling, what Ashlyn was going through, thinking about doctors, nurses, waiting rooms, PICU rooms, hospital food, sleeping on floors, tears, prayers, support, and HOPE!
And then I also have been thinking about how much progress Ashlyn has made over the past year: recovered from decompression surgery, MRI's, doctor appointments, trips to Duke, finished physical therapy, started and finished occupational therapy, and not to mention all of her physical development!
And then I think about what the future holds for Ashlyn: excited that she can have a "normal" childhood (HOPEfully free from any Chiari pain or symptoms) and HOPEful that her surgery from one year ago will be the only decompression surgery she will need.
I'm tearful thinking of the past, present, and future. Ashlyn is a picture of inspiration, determination, and HOPE. She is a fighter. She is a Chiari warrior. She will not let this incurable brain disorder slow her down! We are blessed with an amazing little girl and thankful to the Lord for all he has given her and us!
I've been reminiscing a lot this week as I remembered where and what we were doing one year ago, how I was feeling, what Ashlyn was going through, thinking about doctors, nurses, waiting rooms, PICU rooms, hospital food, sleeping on floors, tears, prayers, support, and HOPE!
And then I also have been thinking about how much progress Ashlyn has made over the past year: recovered from decompression surgery, MRI's, doctor appointments, trips to Duke, finished physical therapy, started and finished occupational therapy, and not to mention all of her physical development!
And then I think about what the future holds for Ashlyn: excited that she can have a "normal" childhood (HOPEfully free from any Chiari pain or symptoms) and HOPEful that her surgery from one year ago will be the only decompression surgery she will need.
I'm tearful thinking of the past, present, and future. Ashlyn is a picture of inspiration, determination, and HOPE. She is a fighter. She is a Chiari warrior. She will not let this incurable brain disorder slow her down! We are blessed with an amazing little girl and thankful to the Lord for all he has given her and us!
One Year Ago (Brain Surgery Day)
April 10, 2013
April 9, 2013
March 28, 2013
March 15, 2013
MRI Comparison
This is Ashlyn's MRI with Chiari Malformation with a herniation of 10mm. Very little spinal fluid is flowing into the spinal cord. As you look at the image, you can see the brain sinking into the spinal cord.
This is Ashlyn's MRI after she had Chiari Decompression Surgery. The portion toward the top of the image (kinda looks like a white triangle) is where the brain was pushed up, so the spinal fluid could flow freely. The top vertebrae was also removed and a dura patch was inserted.
So, these scans might look foreign to many people and it is difficult to explain without being able to literally point out the differences, but it is a MAJOR improvement! The post op MRI looks fantastic!
March 5, 2013
Follow Up with Neurosurgeon
Ashlyn had her one year post-op appointment with her neurosurgeon at Duke Children's. It was great to see Dr. Fuchs again and show him how Ashlyn has grown and developed. Ashlyn was a little shy and didn't want the nurses or Dr. Fuchs to touch her, despite all of our pep talks to prepare Ashlyn to see the doctor. Oh well. The appointment was pretty uneventful, just like we were expecting. Dr. Fuchs showed us the pre-op and post-op MRI's, which we hadn't seen before so it was really great to have him explain those to us. Ashlyn had her post-op MRI done six months ago but we hadn't talked about it with Dr. Fuchs. I was curious as to what the post-op MRI looked like compared to the pre-op MRI. It was pretty cool to see the brain moved up to where it should be and not sagging down into her spinal cord, blocking spinal fluid. Awesome!
So, now we don't have to go back the neurosurgeon for another year! Dr. Fuchs likes to see the little ones that he performed surgery on in another six months, but since Ashlyn is doing so well, we can wait a year! Thanks again Dr. Fuchs and your team for helping our daughter!!
Up next on the blog: Comparison between pre-op and post-op MRI's.
So, now we don't have to go back the neurosurgeon for another year! Dr. Fuchs likes to see the little ones that he performed surgery on in another six months, but since Ashlyn is doing so well, we can wait a year! Thanks again Dr. Fuchs and your team for helping our daughter!!
On the way to Duke
At the doctor
On the way home from Duke
Up next on the blog: Comparison between pre-op and post-op MRI's.
February 18, 2013
OT
Proudly presenting the newest graduate from Occupational Therapy: Ashlyn Hope!!
What does this mean?? Ashlyn has completed her goals for occupational therapy: her sensory processing has improved, her feeding issues have improved, her fine motor skills are great, and her difficulty "moving through space" has improved. Awesome!!
What this also means: We do not need to go back to the Children's Hospital for the neurologist, the developmental specialist, the physical therapist, or the occupational therapist!! Whoa!! Ashlyn has made major strides (pun intended)!! She just learned to walk one year ago (at almost 20 months).
We said our good-byes to the therapists, the receptionists, and many others that we have made friends with over the past year or so. It was a little bitter/sweet as we walked out those doors for the last time.
So, so, so proud of Ashlyn!
Up next: in a few weeks we have Ashlyn's one year post-op appointment with the neurosurgeon at Duke.
What does this mean?? Ashlyn has completed her goals for occupational therapy: her sensory processing has improved, her feeding issues have improved, her fine motor skills are great, and her difficulty "moving through space" has improved. Awesome!!
What this also means: We do not need to go back to the Children's Hospital for the neurologist, the developmental specialist, the physical therapist, or the occupational therapist!! Whoa!! Ashlyn has made major strides (pun intended)!! She just learned to walk one year ago (at almost 20 months).
We said our good-byes to the therapists, the receptionists, and many others that we have made friends with over the past year or so. It was a little bitter/sweet as we walked out those doors for the last time.
So, so, so proud of Ashlyn!
Up next: in a few weeks we have Ashlyn's one year post-op appointment with the neurosurgeon at Duke.
February 6, 2013
One Year Since Life Changing MRI
One year ago we heard the words Chiari Malformation for the first time. One year ago our lives changed forever with those two words.
Our youngest daughter Ashlyn Hope, was 19 months old and she went in for a MRI due to some developmental delays and favoring of one side of her body. We were thinking that MAYBE she had a stroke or brain hemorrhage when she was born, but we were shocked to find out differently.
Our youngest daughter Ashlyn Hope, was 19 months old and she went in for a MRI due to some developmental delays and favoring of one side of her body. We were thinking that MAYBE she had a stroke or brain hemorrhage when she was born, but we were shocked to find out differently.
I will always remember the moment I received the phone call from the doctor with the devastating news about Ashlyn. I was at work and I ran to the office so I could hear the nurse as she spoke. Tears rolled down my face as I didn't know exactly what the words Chiari Malformation meant other than my daughter had a malformation in her brain and she was being referred to a neurologist and a neurosurgeon. I remember trying to take notes with my shaky hand as the nurse spelled out Chiari Malformation. I also spelled out INCURABLE. I remember trying to phone my husband and explain between sobs the results of Ashlyn's MRI. I remember calling our families with the devastating news. I remember coming home to see tears streaming down my husband's face.
Since this day, we have spent many hours at doctor's offices, at various appointments, at more MRI's, physical therapy sessions, occupational therapy sessions, and of course brain surgery. We have spent many hours in prayer. We have spent many hours crying. We have spent countless hours rejoicing.
Ashlyn continues to be our little miracle as she fights this incurable brain malformation. She is doing AMAZING and no one would ever be able to guess that she had brain surgery. She continues to grow and develop and amaze us with her contagious laughter and personality. She is happy and full of HOPE!
One year ago:
January 22, 2013
Development
Ashlyn met with the developmental specialist and he was very please with her progress! When Ashlyn was first referred to the specialist when she was about 14 months old, she was behind in her physical and speech milestones by over 6 months. She has now caught up to other kids her age!! The doctor does not need to see Ashlyn again unless we have concerns!!
Wahooo!!! So proud of you, Ashlyn!! Keep fighting kiddo!!
Wahooo!!! So proud of you, Ashlyn!! Keep fighting kiddo!!
January 11, 2013
Glasses for Strabismus
Ashlyn's eye continues to cross and the doctors are still unsure if it is related to Chiari or not. The eye doctor thinks it is probably related, the neurosurgeon doesn't think it is a result of Chiari.
The eye doctor has seen some improvement with Ashlyn's eye so she wanted to try glasses before doing surgery. Ashlyn's vision is good but the glasses will help to align her eyes. They are like really strong bifocal lenses so it might take Ashlyn a little while to adjust to them. Either way, she looks super cute with her new glasses!
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