Tuesday, January 24, 2012

Words Cannot Express

Will has words!!!!  Over the past few weeks, Will has been working very hard at speech.  We are basically trying to teach him to talk by isolating all of the sounds that make up words.  And...drumroll please...he is beginning to use sounds to actually communicate with us! This past weekend, Will was in his highchair, and all on his own he said "ah-dun"...meaning he was "all done" with his breakfast.  It has blossomed from there, and two days later he was saying "ah-dun" to get out of the cart at the grocery store.

Jack and Will brushing their teeth together
Our little Buster can now say:

all done

This is awesome!  As little as 3 months ago, Will did not have ANY words and now he has a whole list.  Even Jack has been helping Will learn, and it is so much fun to see them working together. Words truly cannot express our joy. Oh, and by the way...still seizure free!!!

Wednesday, January 4, 2012

A New Year

This is a strange week of "anniversarys" for us.  On Tuesday we celebrated 2 wonderful, amazing months of seizure freedom since Will's surgery.  What a fantastic way to start 2012!  Happy New Year!

Will, two days after his first known
seizure. The welt on his forehead is
from hitting the wall during a spasm.
Thursday is another sort of anniversary in this journey, as Will had his first known seizure exactly one year ago on January 5, 2011.  Our entire world changed in an instant.  It is amazing how much has happened to our family and to our little Buster Beans in just one year's time.  A year ago, we knew nothing about epilepsy, had never heard of infantile spasms, were clueless what an EEG entailed, and hardly ever bothered to read an Explanation of Benefits.  Before Will's first seizure, if someone had told us that Will had a malformed area of his brain and that we would make the choice to remove his entire left temporal lobe we would have thought they were crazy.  And yet, here we are.  One thing is certain, we will never take the health of us or our children for granted ever again.

Will had a follow up appointment at the Clinic in late December, and it was the first time we have driven to an appointment there and not been terrified of what we might find out or what might happen.  It was really fun to get to report no seizures!  When Will's neurologist (who generally takes a very no-nonsense approach) heard the news, she squealed, scooped Will up and gave him a big hug.  It was a great moment for us.  The doctors told us that the first 6 months is the most critical time period for a relapse, and they would like to have more time pass before we really breathe a collective sigh of relief, but everyone is very happy with how he is doing right now.

Will continues make gradual progress in therapy.  Will did so well in physical therapy (which primarily focuses on gross motor skills) that he has "graduated" and only needs to do physical therapy for periodic assessments to make sure he continues to progress appropriately.  We were at a physical therapy session, and his therapist wanted Will to climb up a set of stairs, expecting him to do it on his hands and knees.  He grabbed the railing, and walked up them standing up!  The therapist looked at Kelly and said "I don't think he needs to come see me anymore." Hooray for Will!

Will continues to make strides in occupational therapy, which focuses more on fine motor skills and Will's ability to function productively in the world around him.  He works on activities such as stacking blocks, simple puzzles and toys that require use of basic problem solving skills.  It is hard work!  The good news is that we are seeing real progress. Will has learned to stack cups and is very proud of himself when he does it.  During a recent session, one of his Occupational Therapists said that she is going to need to rewrite his treatment goals, because he has already met most of his current ones. All of the occupational therapists working with Will are very optimistic that he is going to catch up with his peers someday.
Our Christmas Card Photo

Speech and communication continue to be Will's most significant areas of delay.  Although he still has a very long road ahead of him for speech, we are continuing to see progress.  Last night, he learned to blow kisses, which in our totally unbiased opinion is pretty darn adorable.  We are still waiting for his first real words, but we remain optimistic that it will come eventually. We like to say that Will moves in "inchstones" rather than "milestones", and we are watching him move forward one tiny inch at a time.