Today someone politely asked me if I was worried about Isla having seizures and for a second my heart skipped a beat. But, I regrouped and explained what I know to be a fact that Ailbe’s condition, isn’t genetic. That she was born with a birth defect in her frontal lobe (cortical dysplasia) and that is why she developed infantile spasms (life threatening catastrophic epilepsy) at eighteen months. This conversation triggered the thoughts I’ve had daily for the last 15 months of Isla’s life despite knowing that the condition isn’t genetic coupled with a sadness I feel for Ailbe.
Truth of the matter is, there were signs. Although Ailbe didn’t have her first spasm until 18 months. There were signs. Ailbe had 10ish words at 18 months and by 15 months Isla has around two hundred words she frequently uses and can repeat all words (even hippopotamus😝). We didn’t know there were signs and many children don’t speak before 18 months and are completely healthy children! She and Isla are two extremely different kids and as much as I tell myself this, I will still worry until 18 months old and probably a few weeks after. Does that make me crazy? Probably. But I know there’s validity in my concern. Have I thought about having the doctors sedate Isla and scan her in an MRI? Oh, only every day of her life. I had actually forgotten to worry for a few weeks but (not purposefully) was reminded this morning.
On a positive note. Ailbe is TWO years seizures free since June 19th, 2015. She is currently fighting to attend TK in the fall where she would be in a regular GE classroom. My child is not allotted the same rights as your children she is being classified into a group where we are told what is best for her. The school district wants to keep her in a collaborative preschool but we (as well as her team of nuerologists and therapists) believe she would be most successful with nuerotypical peer models. But a group of people who have seen her for 12 hours a week “know” more than we do.
Ailbe can do so many things we always hoped she could do but also feared she may not. She can follow two step directions, match objects, identify names, recognize picture cards, sit for book readings, build blocks, run, climb, swing and is started to string words together into sentences!!! We are so proud of her!
To recap earlier blogs we were told that Ailbe would never talk, that she didn’t know she was a human being and we were told the word “vegetable” by one neurosurgeon (our team Ailbe followers know how I feel about said doctor) and basically that her only “hope” in life was a hemispherectomy. Thank goodness for our intuition and our nuerologist (and hero) that we choose to take every other route possible.
I recently posted a recording of Ailbe speaking and will post again for you all to hear.
We are so proud of Ailbe and so excited for her future.