Sunday, September 20, 2015

Where do I Begin?

If you've clicked into this, you probably know a little bit about me and my family.  But, please read the "About" page before reading on.  This platform was suggested to me by a friend as a good way to share what's happening with us.  Many of you probably see my posts and pictures on Facebook. And many know we were recently at Children's Hospital in St. Paul for two weeks.  You may be thinking "why isn't Sarah back to work?"or "Madelyn must be better now that they're home".

This is one of those posts where it's like where on earth do I begin?!  Two years is a short time, but it is also a LONG time in our family.

I am choosing to write this blog partly as a way to protect my heart and conserve my emotions.  It is very difficult to have to repeat the same heartbreaking story over and over to each concerned and caring person.  It's painful to see people's reactions.  It's anxiety-provoking knowing that the question "how is Madelyn?" will be coming.  Thank you to our dearest friends and family members who have been with us for this journey and have had to face this head-on.  Because of you all, I'm able to feel supported and empowered by writing this.  Here it goes.....

Madelyn was diagnosed with Congenital Cytomegalovirus (CMV) at 5 months old at our local hospital.  It explained her hearing loss and developmental delays.  It was traumatic to learn of, but it was also a relief in that it was a static event.  She would be behind, but we would help her progress.  She wouldn't get sicker and it wouldn't get worse.

In January of this year, Madelyn began having seizures.  She would have up to 5 clusters in a day, lasting up to 20 minutes each.  She never lost consciousness.  She bounced right back when it was over.  It was scary, but we felt manageable.  We began various treatments at our local hospital.  One treatment involved us giving her an injection in her thigh every night for 6 weeks.  Nothing worked.  So, I began looking into second opinions.  I came upon the Minnesota Epilepsy Group.  They are a group of Epileptologists and are the leaders in epilepsy research and treatment.  I got Madelyn in for an appointment in June.  We were so impressed and so hopeful.  At the beginning of August, Madelyn began a new medication.  On the 2nd day of medication, her seizures disappeared.  It was like a miracle had happened.

However, that morning, I couldn't wake her up in her crib.  She was breathing but it was like she was sedated under anesthesia.  She was admitted to our local hospital and monitoring by our neurologist in St. Paul was done via phone conference with the local doctor.  On Sunday of that weekend, the decision was made to have Madelyn transferred via ambulance to Children's Hospital in St. Paul.  Minnesota Epilepsy Group manages the care of epilepsy patients in this hospital.  This is what began a 2 week, emotionally-draining hospital stay.

Madelyn had every test under the sun done to determine what sedated her.  It was basically a "rule-out" process. She was tested for meningitis, encephalitis, stroke, aneurysm, West Nile, Lyme's Disease, etc, etc.  It all was negative.  All of this testing meant that practically every medical department was involved in Madelyn's medical care.  Because of this, she really received a very thorough and comprehensive evaluation.  One week into the hospital stay, the medical team sat us down and explained that they felt Madelyn was misdiagnosed at our local hospital when she was 5 months old.  They explained the characteristics of Congenital CMV and discussed how it was not an appropriate diagnosis for her. They did further lab work and confirmed that Madelyn did not have Congenital CMV.  It was a jaw-dropping moment for Greg and I.  The past 17 months have been us learning about Congenital CMV- what therapies worked, what were the outcomes, what possible needs would she have in the future, etc.  We also were back in that place of uncertainty.  What has caused Madelyn to be the way she is?  Why does she have hearing loss, developmental delays and epilepsy?

The good news was that Madelyn woke up.  She became more like herself.  The doctors determined that she had a UTI and ear infection.  And when the new seizure med was added, it was just too much for her little body and knocked her out.  Once she got on antibiotics and the seizure med dose was tweaked, she was fine.  She had a minor surgery to have tissue removed from her airway to help with breathing.  She was recovering well.  All great news, right?

Our world changed at the end of our 2 week stay at Children's.  A geneticist, neurologist, pediatrician, and epileptologist came into the room to talk with us.  They wanted to reiterate that Madelyn never had CMV.  But, they also wanted to tell us what was happening.  The team feels that Madelyn has a neurodegenerative condition, likely resulting from a gene mutation at conception.  Time stopped when they said that the likelihood of survival was not high and we should prepare ourselves for what the future may hold.  Then, the palliative care team met with us, so that if and when home nursing services are needed, it's already arranged.

There's no timeline and there's no crystal ball.  But, this is what we're coping with right now.  We are trying to enjoy each and every day with Madelyn.  We are finding joy in every smile and every snuggle.  She is the biggest blessing to our family and we are so grateful to be her parents.

Writing this post is like a release for me.  All of the "how are things going?" and "let's meet up for coffee" texts from all of you have been so kind.  Sharing this individually with each person was a task I couldn't bear to take on.  This post has allowed me to put the information out there.  Thank you for reading.  Thank you for supporting us.  And please keep praying for Madelyn.


  1. Hello! I read your article on the Minnesota Epilepsy page. My daughter, Leah (2 1/2 years old) was also diagnosed with Infantile Spasms, and we go to MN Epilepsy center as well. She seems very similar to your daughter. We are actually celebrating 6 months seizure free tomorrow(5/28)! :)