Saturday, February 28, 2015 wake up


Once upon a time there were two little girls.  It had been a very long time since the two little girls really played with each other.  Their Mommy and Daddy let them play for a long time without checking on them because the silence was so sweet.

The little girls played and played.

In Mommy and Daddy's room.

With Mommy's perfume and Daddy's cologne.

The little girls exclaimed with glee just how nice they smelled....


All-of-a-sudden their Mommy and Daddy could smell them from far away downstairs in the living room.

Oh.  No.

Mommy and Daddy have headaches and may suffocate in their sleep.

The End.

Monday, February 23, 2015 be all alone

...just for the day...

...and it was lovely.

There was no snow day.  All the kids were healthy and went off to school and Mark headed off to work on campus for the day.  I had 4.5 hours all to myself.  The silence was sweet.

I didn't do anything frivolous like get my nails done or go shopping but I was able to clean the whole house without interruption!

For the first time in months, our whole house was clean.  All.At.Once.  No matter that it lasted all of about five minutes after our first child got home...but it is just the satisfaction of knowing all three bathrooms were sparkling.

Just to celebrate the quiet, and the clean, I decided to make an oldy-but-goody for the kids for after school.

No Bake Cookies

2 sticks butter
4 cups sugar (you can go a little light on the sugar)
1/2 cup Hershey's chocolate
1 cup milk

Bring these ingredients to boil for one minute.  Remove from the stove and then add:

7 cups quick oats
1 cup peanut butter
2 t vanilla

Scoop spoonfuls of the cookie mixture onto wax paper and let set for about an hour or two.

I have found these cookies to be a little bit tricky.  If you boil them too long, they'll be dry and crumbly (but instead will make a delicious topping for yogurt!).  If you don't boil them long enough they'll be sticky and won't set (but who doesn't love a gooey mess of chocolate to snack on?).  This evening they turned out perfect.

Perhaps its because they were cooked in a clean kitchen.

Sunday, February 22, 2015 prepare the kids

...for going back to school.


I feel like this scenario is on repeat in my head.  But alas!  It's fo' real.

Winter break.

Not to be confused with Spring break (which is the first week in April) or even the Holiday break (which is of course a two-week period).

Winter break is a another break in the school year worked into President's Day.  However, instead of having only one day off the children get a full week.  Why of course they do!  Those poor sweet souls have been working too hard!  Why with the five snow days and Martin Luther King holiday they have almost completed one full week of school!   But...they haven't.

Instead, they were given an entire week, off of school.  Should I mention that it was the coldest week of winter so instead of skiing and sledding outdoors they spent it indoors creating blanket forts and doing art projects.  Our girls produce copious amounts of art.

We did our best to find a balance between schlepping them around town doing a few activities with them,  coaxing them off of video games letting them entertain themselves, and having them drive us crazy encouraging them to find productive, independent things to do.

I think they enjoyed their break.

And I cannot lie, I certainly do enjoy the lazier mornings, the break from the hassles of homework, and the break from extra-curricular activities.

But for-the-love-of-all-that-is-holy....they need a break from each other.

And for the record, there will be no snow-day-dance in this house this evening.  Thank goodness, my children haven't heard of this one.

I have my fingers crossed they'll return to school in the morning.  Having said that the windchill forecast (-25) is not looking so good for me...

Monday, February 16, 2015 tidy and clean

...and contemplate new ideas

It's hard to believe it's already the middle of February.  Six weeks have passed in 2015 and I never had the opportunity to farewell 2014.

I haven't yet made any New Year's resolutions.  I didn't have any profound reflections of 2014 to share.

There are moments of some days where I am overwhelmed by all that has happened with Abbey.  Other moments when I am overwhelmed by so many of the things 'I should have done/thought about/tried'.

These past several weeks have passed so quickly.  We've spent so much time at the hospital, at doctor's offices, and at therapy appointments.  Mostly we are so thankful that Abbey is doing so well.

We don't often think about what could have been...but we do think about what if it happens again...

We have strict measures in place to try to keep her healthy, we have a plan for having her return to school, and we have a plan for if/when she catches another virus.  I would say we are getting a little more confident each day that she is going to stay healthy and continue to heal.

The fog is beginning to lift.

We are doing well.

Abbey is healing.  She has stopped taking a nap every day.  She is beginning to do her chores again.  She is becoming more independent.

Her siblings are getting back into their routines.  They are quarreling, tattletale-ing, and throwing each other under the bus whenever it suits them best.  This normal is so nice.

And I am finding that I my mind is beginning to contemplate projects, activities, and tasks.  I keep looking around the house and thinking thoughts like, "maybe I should just paint the scuff marks in the kitchen" and "the bathroom could use a little makeover" and "Spring is just around the corner I need to order some sod design our yard".

This normal is nice too.

Now its time to start making lists again...

Monday, February 9, 2015 quietly report we are beginning to

...find a balance...reach equilibrium...get back to normal.

1.  All the kids went to school today.  (Abbey went to school for two hours.  I then scrubbed her up, made her change her clothes, and sprayed her with Lysol...that's normal right?)
2.  Mark worked in his office all day.
3.  I began to tackle the large pile of paperwork that has been stacked since Abbey's initial hospitalization.
4.  Will had a good day in school.
5.  Isabella's new planner is coming in handy.
6.  Audrey was invited on a playdate.
7.  Abbey entertained herself for an hour.
8.  Will and Audrey were wrestling.
9.  Abbey and Audrey were arguing
8.  I made dinner...

...and there were complaints.

In some ways, I find the chatter from the peanut gallery about the 'chicken being too spicy' to be comforting.

It's nice for things to be normal.

PS:  (I did NOT spray her with Lysol although I wanted to.)

Tuesday, February 3, 2015 share some things

...that were key in helping our little girl heal...

For Abbey, the best support for her has been the tangibles.

  • The letters she has received.  
  • The cards her friends have sent.  
  • The pictures her class and friends have sent.
  • The many videos she has received.  

Friends from all over the country have sent her videos.  Even friends that she doesn't remember...these bring a sweet smile to her face; because she knows, so many people are cheering for her to get better.

One of the ways in which we were lucky this time is that she was able to have some of her classmates actually visit her while she was in the hospital!

She couldn't wait for them to visit.  Just thinking about them coming to the hospital to visit her put such a smile on her face.

Good idea #1:  When your child visits a friend in the hospital bring a game for them to play together.

Charley is Abbey's best friend from school.  His mom brought him (and his little sister) up to visit twice.  She even brought Connect Four for them to play!

Abbey could only stay up for about twenty minutes for that first visit, but Charley was such a great sport about that.

Good idea #2:  Bring big giant posters that your class makes to hang on your student's wall.  These were Abbey's favorites.

Mrs. Chappuis has been one of Abbey's biggest supporters.  

Poster number 1

Good idea #3:  Borrow games from the child life/family center for your child to play when family and friends come to visit.

Painting and friends...

Good idea #4:  Arrange for visits from the college athletes from the nearest Big Ten University.  This definitely was a highlight from Abbey's hospital stay.

These students and other volunteers come nearly every week as their schedule permits.  They take a photo, sign autographs, and talk with the patient's and their families at Mott.  Abbey was too tired to stay awake and wait for them that evening...but she was insistent we wake her up when they finally arrived.  You can see she was not disappointed.

Three field hockey players and a track runner.
Good idea #5:  Have a unit host...whose job it is to make your daughter happy.  She sat with Abbey on a couple different occasions and drew pictures for her to give to her teacher and classmates.

It's funny...Abbey had four amazing teams of doctors following her care....and Mark and I spent hours sitting by her side...yet it's our community of friends and family members (siblings, grandparents, extended family) and even strangers, that have truly helped her the most by bringing a smile to her face by showing her that they care.

Sunday, February 1, 2015 share what we know about monophasic ADEM

...we have learned more than we care to know this past month.

I haven't been writing much lately...partly because I have been overwhelmed, partly because I have been on hospital time, and partly because the moments I have had free...I have spent them answering the dozens of texts and emails and phone calls of concern that we have received.

And for all of those well wishes...I will be ever grateful.

Looking back, the last time I wrote was 20 January.  Abbey had been making excellent gains with respect to all of her skills.  She was nearly ready to be discharged from both physical and occupational therapy and she was all set to begin attending school for half days...but she caught a cold virus.

Will came down with the same virus, one day later.  Neither of them were able to attend school all week.  It was an ugly virus for both of them.  They had sore throats, fevers, and awful coughs.  While Will was slowly getting better, Abbey just couldn't shake the fever.

By Friday the 22nd I had already had multiple conversations with her pediatrician, we had visited the emergency room, and we even had a follow-up visit.

Each time we were told:

  • Be patient. 
  • She is going to be fine.  
  • The virus just needs to run its course.  

By Saturday the 23rd, her fatigue set in and her speech became slurred.  She had quit eating and just wanted to sleep.

When she woke up Sunday morning Mark and I realized that her slurred speech wasn't just from her fatigue.  The left side of her face was droopy and she couldn't smile with both sides of her mouth and she was drooling. As soon as we decided to take her to the hospital again we tried to get her to eat and at that point she started to vomit (we now know, this is another neurological symptom).

Thank goodness we live where we live.

I am so thankful we are in a community with one of the top Children's Hospitals in the country.

Abbey was diagnosed with monophasic acute disseminated encephalomyelitis.

They are considering this the same attack (monophasic) of ADEM that she had right after Christmas.  Apparently the cold virus she had 'interrupted' her healing process.

The doctors have tried to assure us this shouldn't happen again.

Abbey has a much longer recovery ahead of her this time.  While her acute symptoms have recovered, the damage to her brain was in her brain stem this time.  Her mood, behavior, and affect have been affect the most.

I feel terrible for her.  It breaks my heart to see her struggle.

Our family is exhausted and overwhelmed.

Having said that, we have been humbled by the outreach from this community we are so new to, and by the comfort from friends and family both near and far away.