Continuing to Heal

Before we begin this blog update, we would like to ask everyone for their continued prayers for the students and families in Chardon, especially those whose lives were unfortunately taken away too soon.  We are still in shock and disbelief at this horrible tragedy and pray for peace and healing for the entire community.

Bubble Bath

The past few weeks have been a bit difficult for us.  We had been a bit worried about Will because his progress with communication and speech seemed to grind to a screeching halt in early February.  He has stopped saying most of his words that he worked so hard to learn, although we don't know if they are truly lost or if he just stopped using them.  To make matters worse, Will had a bad cold and was just generally not feeling all that well.

Despite this, we were completely caught off guard on Wednesday, February 22, when Marie, our babysitter, called Kelly at work to tell her that Will had just had what she believes was a seizure that lasted about a minute.  There were no head nods, but Will just sort of stared off, somewhat zoned out in a way that Marie said just wasn't normal.  Through tears, we both raced home from work to hug our little Buster and assess the situation.  After several phone calls to nurses and to Will's neurologist, we were able to get scheduled for a 180 minute EEG the next day, so it was back to the Clinic again.  We were devastated.

Buster at his EEG

It broke our hearts to have to bring Will back to the Clinic and pin him down for another EEG.  As we stepped into the elevator after parking our car on our way in to the Clinic, Will's entire demeanor changed.  He looked down at the ground and got very stiff.  One stranger in the elevator with us said - "Is he afraid of elevators?".  We just said no, he is afraid of the Clinic.  

After many hours of tests and even more hours of nervously waiting for results, we got fairly good news.  Will's EEG pattern shows some slowed brain activity and abnormal electrical spikes or discharges coming from near his surgery site, the left temporal and parietal lobes.  However, it did not show any signs that the suspected seizure (if he had one at all) was infantile spasms.  While we would love to get results that Will's EEG is normal, we know that this is probably not realistic for our little Buster.  His neurologist felt that the abnormal activity was not cause for undue concern, but was more of an indicator that he needs to remain on medication as he clearly has a propensity towards seizures. After a few rough days, this was very good news, and we are extremely relieved.  Buster will undergo several days of tests in April, so at that time we will be able to compare results from this test to see if he is improving, getting worse, or maintaining status quo.  We are hoping that his body is just continuing to heal.

Will's scar, barely visible!

Will's hair has grown back, and his scar is barely visible other than a very small area just in front of his ear.  We actually have to show people where it is or they don't notice it.  As you can imagine, this is a refreshing change from getting asked "How did he cut his head?" by well meaning clerks at the grocery store.  Our favorite barber, who has been cutting hair in Kelly's family for 4 generations, said that Will's haircuts are on the house until his hair has grown back in over the scar.  It sounds crazy to say this, but we are delighted that we are going to have to start paying once again!

Will is still progressing and is an extremely happy little boy.  He recently discovered his sense of humor and gives us huge belly laughs when he thinks something is funny.  It is an absolutely wonderful sound to hear. Last night, he learned how to do "Ring a Round the Rosie" and even says "Down" at the end.  It is so fun to watch him enjoying life!