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!

A Long Road (An Update on Ashlyn)

We are a little emotionally drained at our house.

We are grateful that Ashlyn was able to get an appointment with the specialist this week, considering the waiting list is 5 months long!

To make a long story short, after a long day of of appointments and blood tests, the specialist confirmed that Ashlyn is developmentally 6 months behind. At this point, the doctor is unsure of the reason for this delay so he is trying to get some answers through blood tests.

Ashlyn will start 4 sessions of therapy, two at the children's hospital, and two at our home.

We might have a long road ahead of us and probably many ups and downs along the way. Obviously, our hope is that the therapy will help close the gap in her delays.

We are still feeling a little uneasy and overwhelmed, but we are just trying to take things one day at a time for now.

Thanks for your continued prayers.

Heavy Heart

My heart is a little heavy today. Ashlyn went to the doctor for her 15-month well child check-up and the doctor feels that she is about 6 months behind developmentally. 6 months! Ashlyn has now been referred to a team of specialists to evaluate her delays.
I cannot help but wonder if I did something wrong. What did I NOT do, or what did I do? I guess this is just how a mother thinks sometimes.

My heart is aching.

Please join me in praying for Ashlyn as she is in the Hands of the Great Physician.

Our Little Turtle

I would be lying if I said I wasn't worried, but Ashlyn is 15 months old now and she cannot roll from her back to her belly. I find this kind of strange. We have been working with her quite a bit, we will lay her on her back and guide her arms and legs, but to no avail. We will try rolling her to her left side and also to her right side, but it makes no difference. If Ashlyn is on her back, she will stay on her back until someone comes to her aid. She is our little turtle.

(Ambria took this picture of me and Ashlyn)

A Few Steps Behind

Ashlyn had her one year doctor's appointment a few weeks ago and it didn't go as well as I had hoped. Although I was not surprised what the doctor had to say about Ashlyn's growth and development, it isn't always what you want to hear.

Mariah and Ambria were ahead on most of their milestones when they were younger. Ashlyn, well, not so much. She is taking her sweet time.

The doctor thinks that Ashlyn is 3-4 months behind on many of her milestones for a one year old. Socially, Ashlyn is doing well, but she is behind physically. Of course, she is tiny, she has never been on the growth chart. She formed her "own" curve on the chart but now has slipped off her curve a little. This is no surprise, both sides of the family are petite, but we will try to increase her daily calorie intake. She is having a few feeding issues and difficulty with food textures so we are working on this as well.

Ashlyn also has poor muscle tone in her legs. I am hoping she is just being lazy, and that she just thinks standing and/or pulling up is overrated. The doctor will reevaluate her leg muscle tone in a few months and in the meantime, we will work on strengthening those little legs.

Until then, we will just keep on keeping on with our Little Miss Ashlyn, who brings us more and more joy each day!