Friday, January 9, 2015 share Abbey's story

... that started on Christmas Day.

Abbey is beaming ear-to-ear.  We had just finished opening up the gifts.  I think you would agree that she was pretty happy.

On Christmas Day, after breakfast, after gifts, I noticed that Abbey was becoming a little unreasonably grouchy.  When I took her temp it was slightly elevated at 99.5 degrees. We gave her some Ibuprofen and proceeded about our day filled with holiday festivities.  Gifts, food, family...repeat.

Yes.  She is that excited about body wash!
Abbey had so much fun running around with her second cousins, sneaking desserts, drinking too much soda, and carrying around baby Ellen.  All day.  This girl loves babies!

The following morning we celebrated Christmas with Mark's family.  Abbey seemed a little punky lying on the couch while we waited to open gifts...I took her temp.  Once again it was 99.5.  A little Ibuprofen and a bit later it seemed as if she felt like a million bucks.

She played, ran with her cousins some more, and probably ate a few too many pieces of candy.  She even gave a little Magic show.

Much later in the day, she crawled up on the couch.   I had a feeling that fever was creeping back... and it was.  Her temp was 100.5.  She had been running and playing and it seemed that it was finally the time that her body just needed a rest.  It was unfortunate since she and the rest of the kids were supposed to go to a pool party at the hotel where Mark's cousins were staying.  Mark and I made the decision she should get some rest instead.  While she was disappointed, she didn't put up a fuss.  Was this a clue?

The next morning when she awoke is when the virus started to ramp up.  She woke up crying...and her temperature had spiked up to 103.3.   We did what we have done many, many other times to get a fever down....we alternated Ibuprofen with Tylenol all throughout the day and made sure she was eating and drinking.    Looking back the only difference we see between this virus and others is that she really slept nearly the whole day away.  And when she was awake, she just laid very quietly on the couch.  She really didn't talk or respond much to things we were asking her...but, we just thought she didn't feel well.  Was this another clue?

I slept with Abbey that night.  Sometimes, when the kids' spike these fevers, I just like to lay with them so I can hear their breathing and make sure they drink liquid throughout the night...and I also like to keep giving them their Tylenol/Ibuprofen to make sure they are comfortable.   When Abbey woke up in the morning she got up to use the restroom.  She walked in and closed and locked the door.  She started to cry.

I can still hear her locking that door and the voice in my head that said "you need to tell her to unlock it'.  She couldn't get up to unlock it.  We couldn't find the key to open it.  She was crying.  We were worried.  When we finally got in, she had had an accident and was crying.  And when Mark began to get her into the tub to wash her up, he realized she couldn't lift her legs in order to get into the tub.

We thought she was weak from not eating much the day before.  So I made her some toast.  She proceeded to immediately throw up the few bites she took.  He began to get her out of the tub and again noticed she couldn't lift her legs.  In one, or in each of these separate moments we knew we needed to take her in.

Mark's family lives in the Grand Rapids area and there is an amazing (in my eyes) Children's Hospital that we took Abbey to.  On so many levels I am so thankful we were there.  I think all the right things were done.  And given the complexity of her condition and it rareness (is this a word?) very little time was taken for them to diagnose her condition.

I think after the flu and RSV were ruled out the doctors initially suspected meningitis.

We walked in and they escorted us to a room right away.  Within a few minutes, they had started fluids.  By noon the attending ER doctor had called the hospital pediatrician for Abbey to be admitted.  Shortly after this the pediatrician did done a spinal tap (which was done unsedated...and she barely moved, bless her sweet little heart).  And perhaps, by this point, he had already been in contact with the neurologist.  Looking back at all the things they were asking her to do...she had lost many of her reflexes and she wasn't responding well to the questions they were asking her.

She was a very sick little girl.

I am thankful I wasn't the diagnostician...swelling of her brain was not on my radar.

After numerous tests (a spinal tap, a CT scan, and an MRI) and by 9:00 that evening, Abbey was diagnosed with ADEM .   It is an autoimmune disorder that attacks the spinal cord and cerebellum following a virus or infection in the body.  It causes swelling in both these area and attacks the myelin on the nerves.

The treatment was five days of a very high dose of steroids.

This photo was taken before we knew her diagnosis.

We needed to wear masks and gowns in case she was contagious.

Even in this photo you can see the joy her sisters and her brother bring to her.

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