Tuesday, January 20, 2015

...to share some ordinary

...moments in our day to day

This is what I get for leaving my girls in the bathtub unattended.  Oh, Crayola, I thought you were only supposed to color the bathwater.

Never fear it washed off....by the next day.

They are sorry.  Can't you tell?

We've all admired one of Abbey's recent gifts to help cheer her spirits...our talented neighbor made this for her!

Abbey has begun to play with Audrey again for short periods of time.  We love seeing them get back into their own play routines.

Occupational therapy.  Painting with eye-droppers.  How clever!

Audrey had a birthday party at the local Hands-On Children's Museum.  And we just received a membership for Christmas (Thank you Kyle & Taylor).  Isabella (and friend Janet) and Abbey tagged along to enjoy the fun.  

In this photo Isabella is playing the UM fight song with a flip flop.  I am sure her Dad would be proud.

Abbey has surrounded herself with a bubble.  This trick never gets old I tell you.

Snow play.  We have a total of about three inches of accumulated snow over the course of this past week.  Why yes...We can handle Michigan snow.  

Having said that, poor Audrey had to enjoy the weather today all by herself.  Isabella was working on homework while Abbey and Will were inside nursing high fevers.

Only on 'sick days' can the kids enjoy television shows and iPads.  And they sure do milk it for all its worth.

"Just one more"

Thursday, January 15, 2015

...document a few

...of the visitors we had while Abbey was in the hospital...




The experience with Abbey at times has been overwhelming and but the support, the words of comfort and the prayers make my heart smile.

They make Abbey smile too.

It's kind difficult to be a photographer during a stressful period of time...it's hard to take photos of events that aren't enjoyable.

I did manage to take some photos of Abbey with the many visitors we had....But I missed many photo ops with just as many visitors (my Aunt and Uncle, Ellen's friends, a cousin I haven't seen in many, many years...).  I wish I had chronicled her visitors a little better for her.

Let's start with these four...talk about a not-so-great-way to spend your Christmas vacation.  Isabella, Will, and Audrey were Abbey's biggest supporters.  They were up there for many, many hours each day.  There were a few incentives like: unlimited computer/DS/electronic time, pretty nice family play rooms with XBOX or basketball or art projects to do, there was eating out at the hospital food court, and oh yes...the daily slushies the nurses offered them...but I think they knew how Abbey perked up when they were around.

Mimi and Richard came up to see sweet Abbey that first day and arrived before we were even admitted.  I am not sure that Abbey ever knew they were there that day.  She remembers very little from those first few days.

We all are wearing gowns and masks because we still didn't know Abbey's diagnosis.  This was a protection for us in case she had meningitis.  I found this fact surprising.

Papa drove all the way from Lansing to Ann Arbor to Grand Rapids to collect all the things we needed to extend our stay in Grand Rapids for the week.  Did I mention he made a slight detour via a tow-truck to Brighton?  And Uncle Don rescued him from Brighton before he finished his trek to GR?  And then Uncle Don and Aunt Jean (they aren't pictured) also made the trip to GR to visit Abbey that same night!  

That's quite a posse!
We are all headed to the play room on Abbey's floor.  Liam and Eva were such troopers to be up at that hospital every day of their vacation...perhaps we should call it a trip instead.

Every morning the doctors would do rounds.  Often there were many more than in this picture I captured.  Dr. McGee (pictured in the front) was one of Abbey's favorites.  He had a great sense of humor and was always teasing her about eating her bacon...

We found a token of his affection after he left one morning.  I am not so certain he was our favorite after all:

Aunt Sandy came up to see Abbey too.  She was so great about entertaining the other kids while Abbey was napping or at therapy.

Grandma and Grandpa.  They opened up their home so Kyle and Taylor would be able to spend time with us too. Between juggling houseguests and trips to the hospital they were probably as tired as we were!

Eva woke up with a cold their last day in MI.  They wanted to stop by the hospital on their way back to VA to say goodbye.  She was NOT a big fan of the masks.  We thought Kyle needed to show solidarity with her and sport Mickey Mouse mask too.  Doesn't he look cute?

Me and Abbey.  I'd like to say I am her biggest fan but I think her Dad is a close second.

Mark and Abbey.  You see...she really smiles for him.

We appreciate all of you who were able to visit...those of you that made a video (or many videos)...the phone calls that were made...the texts that were sent...and the whispered prayers of support from all over.

Tuesday, January 13, 2015

...to share a glimpse

...of progress

I think this will make you smile.

Seeing them play and wrestle together is music to our ears.

Friday, January 9, 2015

...to 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 http://myelitis.org/symptoms-conditions/acute-disseminated-encephalomyelitis/ .   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.

Tuesday, January 6, 2015

...to share our conversation...

...that took place after school this afternoon...
Me to Audrey:  Who did you play with at recess today?
Audrey:  Well, no one really.  I just sat on the bench.  I was worried about my sister.
Abigail:  Audrey, you don't have to worry about me.  I am going to be just fine.  It's just going to take awhile.
You sure are little one...

...'cause your sister's right behind you cheering you on and worrying about you, every step of the way.

Sunday, January 4, 2015

...to think about our blessings...

....all four of them...

Their holiday break didn't exactly go as planned.  We had dreamed of lazy mornings, movie watching days, and evenings of sipping hot cocoa.  

Mark and I are so proud of Isabella and William and Audrey and how they have been key in Abbey's recovery.

In a way, I feel like the last week was another person's experience...I'll write her story down in the next few days.  In short, Abbey was very, very sick, yet she was so brave, and humble, and funny, and she has made progress so much more quickly than the doctor's expected...

We feel good about her prognosis...

Leaving the Helen DeVos Children's Hospital

...and we are so happy to have her home.