Life as Mrs. Emerson

Evangeline in recovery after her sedated mri. Few things in my life have impacted me the way Eva's chiari and feeding difficulties have the past year.  It has been exactly 8 months since the day that my daughter was diagnosed with a Chiari One Malformation in her brain.  The past 8 months have challenged and stretched me in ways that I did not think were possible.  Not at this young age anyway when there have been relatively few true difficulties in my life. March 10th, the day of our much anticipated second neurosurgery appointment finally arrived.  This appointment had been on my calendar for five long months.  I don't think I started to feel really anxious until I turned the calendar to March and realized that this was the month.  This was when we would find out for better or worse what was happening with Evangeline's chiari.  Would her neurosurgeons continue with a wait and see approach?  Would they suddenly recommend decompression (bra...

The week I've been dreading most for the past 6 months is finally here.  It's the week that our sweet Evangeline will undergo another (sedated) mri and meet with her pediatric neurosurgeons.  In so many ways it feels like many of the emotions I experienced in August and early September are back in full force.  For those of you who may not know, Evangeline has a chiari one malformation in her brain.  It was discovered last July after she began experiencing feeding difficulties and no longer growing at a consistent rate.  A chiari one malformation is when the brain (cerebellum) goes down below the base of the skull and into the upper spinal canal.   Last fall when Evangeline met with the neurosurgeons I really thought that they were going to recommend surgery.  I was surprised when they said they wanted to wait six months to see how Eva would progress with feeding therapy.  Those six months have passed and now here we are preparing for a week...

The day Evangeline ate a banana. If you are a regular reader of this blog, a Facebook friend, or a real life friend you have probably been following the story of Eva's recent health concerns.  Our world was completely turned upside down when in July we found out that my daughter has a chiari one brain malformation.  We met with a neurosurgeon last month and were relieved to find that they were not anxious to perform decompression surgery this fall.  We are scheduled for a follow up mri and neurosurgery appointment in March but for now the majority of Eva's medical care involves feeding therapy 2-4 times per week. If you happen to be wondering, "What in the world is feeding therapy?" you are not alone.  I didn't even know that such a thing existed four months ago.  Feeding therapy involves working directly with food through a progression of steps to help a child hopefully one day eat food on their own.  I found it interesting to learn that both occup...

   This week part of Evangeline's occupational therapy involved stamping with apples!  Eva has been working with apples in feeding therapy for the past month so this was the perfect sensory activity.  It was such a fun activity for both kids that I really enjoyed participating in.  Our occupational therapist Mrs. T showed me how to cut the apple so that it was easy to hold.  What a great idea!  It definitely made it a lot easier for both children to stamp with the apples.  You could also try stabbing the apple with a fork if you didn't want to cut the handle.  We simply used washable paint on a paper plate and then stamped on plain white paper.  You could also use acrylic paint but it is a little harder to remove from little hands.  I would also recommend an old sheet or tablecloth to protect your table.  We have an old fitted sheet that fits nicely on the table to protect it whenever we decide to enjoy ...

 There are many days in a person's life that are so important that the details seem etched in one's mind: graduating from college, a wedding day, having a baby, etc.  For me September 4, 2015 was also a much anticipated potentially life changing day.  It's already been a month but still it feels like yesterday.  It was the day when we would finally learn if our precious Evangeline would undergo decompression surgery on her brain.  Six weeks earlier we had learned that Eva had a chiari one malformation in the back of her brain. When we learned of Eva's diagnosis I was completely blown away.  Of course I knew when she had her first MRI that her Gastroenterologist was looking to rule out chiari.  I thought that it was more of a routine test and honestly it didn't occur to me that they might actually find what they were looking for.  I thought that perhaps Eva had some serious food allergies or possibly celiac disease which might account for the ...

July 20, 2015 is one of those days that I will never forget.  The morning started out so well and full of promise.  My dearest best friend, her husband, and their sweet one year old boy were actually spending the weekend with us.  We had just finished up breakfast when I received a message that I had a new test result in my daughter’s my chart account.  In the two weeks that had followed this day my sweet daughter had a number of blood tests, met with physicians, and had even had an MRI due to unexplained weight loss and lack of desire to eat.  I quickly signed on and scanned through her most recent MRI test results.  Then the bad words started to pop out at me like: anomaly, decrease CSF, less than expected for age, etc.  All of the sudden my heart sank and I frantically wanted to talk to a doctor.  As I continued reading I found the words that would take my world and shake it upside down.  Chiari One I frantically hit print...