Schuyler

The day after returning home from the hospital last year, Allen found a blog about a special girl named Schuyler ("Skyler") who has the the same type of PMG as Callie.  It was the first time I saw a picture and read about a child with PMG.  The author of the blog is Schuyler's father.  The date was May 7th and...

Seizure Info

After our appointment with Dr. Pearl and the news that Callie's next seizure type will probably be a partial seizure as opposed to IS, I started doing some research so that I will know how to better recognize the symptoms.  Here is a good, simple explanation of partial seizures: An epileptic seizure is the body and brain's response to sudden bursts of abnormal electrical activity in the brain.  A partial seizure is an...

New Plan

Today Callie had a checkup with her neurologist Dr. Pearl.  He liked how alert and attentive she looked and was very pleased her seizures have not returned.  In fact, he said now that she is 15 months old, it would be very uncommon for the infantile spasms to return again (although it was also uncommon for them to return a second...

Peekaboo

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Failure To Thrive

Callie has been tiny since the day she was born.  At birth she was 5lbs, 5oz.  The day we left the hospital she was exactly 5lbs.  They made us go out and buy a new carseat that would better accommodate her tiny body before releasing her.  Here she is at the beginning: During her first year, Callie was exclusively...

Seattle

We live in the Washington DC metro area and have very good hospitals and doctors here.  Callie's first pediatric neurologist at Children's National Medical Center (CNMC) was very experienced with over 30 years under his belt.  At one of our first appointments I asked how many PMG cases he sees and he said the practice as a whole...

To Therapy We Go

On May 5th 2009 I was in a fog as I packed up our things in preparation to leave the hospital.  We basically were given this devastating diagnosis and then just sent back out into the world to carry on.  It was strange because nothing had changed, and yet everything had changed.  They handed me a brochure for our county's Infant...

Meds

I have always been a person who avoids taking medication if possible.  I will let a headache go for a couple of hours before I decide I really need to take Tylenol.  (I did, however, enjoy a few doses of Percocet after my c-section.  THAT was good stuff.)  I have had to get over this slight aversion to meds when it comes to Callie.  I don't even recall giving her a drop of Tylenol during her first five...

How it all went down

Our beautiful baby girl was born in November of 2009 and was given a clean bill of health.  The first 5 months of her life were some of the happiest of mine.  Callie so perfectly completed our little family and I was blissfully happy.  One night while the four of us were together I remarked to Allen that things seemed so perfect,...