Thursday, April 23, 2015 share Abbey's progress

...she's come such a long way.

This update is long overdue.  Perhaps its because we are still holding our breath that this disorder will come again...perhaps its because we are still in some kind of recovery mode from the stress of all that happened...and perhaps it's because things are getting back to normal and I don't want to jinx her progress.

 December 28, 2014 seems so long ago. 


Abbey was just being admitted to the DeVos Children's Hospital in Grand Rapids, MI.  At the time this photo was taken I am not sure we really understood the severity of Abbey's condition.  We just knew she was in good hands.

Within a few hours of this photo we were informed her diagnosis was ADEM.

The severity of her diagnosis hit us slowly.

She was such a good patient.  This may seem cliche but this child handled pokes, and IV's, and medications like a champ.  

This photo was taken while her favorite nurse was flushing her IV.  This was her least favorite part of any process.  And she was so good about it.

  She was a sick little girl.

After about a week of high dose steroids and intense physical and occupational therapy we were sent home to Ann Arbor.  The doctor's were pretty reassuring that this would never happen again.  And her prognosis for recovery was excellent.  Nonetheless, I was a mess when we left the hospital.  In my mind she was in good hands in the hospital.  

We took Abbey's recovery process very seriously.  She participated in her therapies and we reintegrated her into school very slowly.  The most important aspect of her recovery they told us was going to be rest.  She rested.  

And she began to recover.  She was soon walking again.  She was regaining her strength in her arms.  And she was excited about school.   She returned for just two hours a day for three days for one week.

Then she caught another virus.  We were worried.  We talked with the doctor's office each day.  They reassured us Abbey was going to be fine.  Until she wasn't.

Once again she was readmitted.  This time to Mott's Children's Hospital here in Ann Arbor where she underwent nearly another week of high dose steroids.  Her symptoms this time were more stroke-like.  Her speech was slurred and she had more trouble with her emotions.

Her recovery has been remarkable.

Within a short period of time she was playing with her sister again.  

We were taking short walks outside.  You can see the steroids made her quite puffy.

We reintroduced her to school even more slowly this time.  We panicked when she got her first fever.  We panicked again when she got her first cold.  And both time she received just fine.

About two weeks ago she received a clean bill of health from her neurologist.  He doesn't expect her to have a recurrence.

I think Mark and I would say she is about 90% recovered.  Physically she is doing extremely well.  She has been discharged from both physical and occupational therapy.  She is playing soccer, and running with her dad, and leaving Art projects all over our kitchen table.

Academically, in spite of missing nearly two months of school, she is doing very well in school.    She is diligent about doing her homework, practicing her math facts, and working on her writing tasks.  Her teacher doesn't have any concerns.

Abbey continues to struggle with the brain functions that we take for granted.  She tends to be quite emotional, she is more impulsive, she giggles very easily, angers quickly, and cries if you look at her cross-eyed.  She struggles with sustained attention, short-term memory and word-recall.  

Although these things are hard for her, she is aware of her weaknesses and works on improving them.  She reminds us when its time to work on her cognitive therapy tasks.

We are so lucky she is doing so well.  She is expected to fully recover.  We can still marvel that some things haven't changed...

She still loves to take care of little ones....

And she is always side-by-side her sister.

She is much more attached to Mark and I since all this has can usually find her right by our side...

She sits with me...

She plays with Mark...

We don't mind.  

We are simply thankful that our days have returned to normal.  Easter egg hunts, visits with the Easter bunny...

...birthday parties, and playdates...

We have big dreams for you little one.  

We are so happy playing on the jungle gym is normal again.

1 comment:

  1. Thank God! I have thought about her so many times since that first ADEM episode. I am so grateful she's recovering so well and getting back to her old self. We love you, Abbey! Keep up the great work!