Wednesday, February 2, 2011

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, almost too perfect, and I felt like something bad was going to happen to spoil it.  It was as if I knew things could not stay that way.  And tragically, they did not.  One evening at the very beginning of May 2010 Callie's little body started slightly tensing and relaxing while I was holding her.  It was like she was trying to pass gas.  I was busy with Owen, the tensing episode passed, and I did not think anything of it.  When it happened again the next night while I was holding her I realized she never passed any gas or dirtied her diaper, but again did not think much of it.  The third night it happened while she was laying on her changing table.  I got a different view of what was happening this time and realized her face was slightly grimacing when she tensed.  Also her arms and legs raised and lowered a little each time she tensed.  The episode lasted for about 5 minutes and then she was fine.  That is when I first thought this was a little odd.  I still did not feel too concerned and nothing stood out when we looked it up online, so I decided to just call the pediatrician on Monday since it was the weekend.  Monday came and it was a particularly nice, sunny day.  Callie slept late and I enjoyed the morning with Owen.  Looking back it boggles my mind to remember how perfect the day started and how terrible it ended.  When Callie woke up she had another episode and I went ahead and called the doctor's office.  I described the episodes and was very surprised when the nurse instructed me to take Callie to the ER to rule out seizures!  Seizures??  I remember thinking this seemed like an over-reaction, but okay.  I called Allen at work to let him know and got the kids together.  Believe it or not, this was our first trip to the ER.  I don't know how it is possible that we had a nearly 4 year old boy and never spent time in the ER, but I guess we were lucky (until this point).  

The hospital is about 5 minutes from our home.  We checked in and Allen met us there.  I had taken a video of Callie's episode and showed it to the nurse and doctor.  They did not say much, but ordered a CT scan.  The results came back abnormal, but they did not really explain what that meant.  Instead, they just said they felt that Callie should have a MRI so that they could get a better look.  The only catch was we would have to be transferred to another hospital for this test because they did not have the facilities for an infant MRI.  So we had to be transferred to another area hospital... by ambulance!  Another first.  Things started getting scary at that point.  To see Callie's tiny little body (less than 12 pounds at the time) hooked up to an IV, strapped onto a large stretcher and loaded onto an ambulance... that was hard.  But nothing compared to what was coming.  

Callie and I were transported and checked into the other hospital about 40 minutes from home.  It was an exhausting night.  We arrived late and then I was interviewed into the wee hours of the morning by a doctor, a resident and a medical student who followed them around.  They did not know what time the MRI would take place the next day, but I was not allowed to feed her in preparation for the test which required anesthesia.  Long story short, we finally had the MRI early the next afternoon.  It was hard letting Callie go to be put under.  About an hour later she was back in my arms and I was finally able to feed her (it had been 12 hours at this point... she normally ate every 3).  She was exhausted and fell back asleep in her hospital crib, which was good because the next test was an EEG.  She slept peacefully while a man hooked up a series of wires to her head to measure her brain activity.  I did not really understand the test and significance of it, but I would just two hours later when a serious looking pediatric neurologist entered the room.  At that moment our lives were changed forever.  He explained Callie was experiencing infantile spasms.  This is an uncommon epileptic disorder in infants.  The EEG revealed hypsarrhythmia, very chaotic and disorganized brain waves with no recognizable pattern.  The underlying cause of her seizures was a very rare brain disorder called polymicrogyria (PMG), specifically bilateral perisylvian polymicrogyria.  He went on to say he did not know if she would ever walk or talk... she would have physical and cognitive challenges, it was just impossible to predict to what extent.  It is hard to describe how it felt to receive this devastating news.  I felt numb at first.  Then sad, so very, very sad.  My heart had broken into a million pieces.  

This is Callie just before she was diagnosed.  When things were perfect.

I am relieved to report that time really does heal.  Callie brings us so much happiness each and every day.  My heart swells with love for her and I have made it my mission to do anything and everything possible to help her stay happy and develop to the best of her potential.  



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