If you were to just look at the testing side of things, the little dragons are ahead in some areas and behind in others. Keep in mind, they don't adjust for prematurity past age two.
If you were to compare our kids to other kids, it might bring up feelings of sadness or grief, loss or uncertainty. But for me, and most of our family I suppose; we are absolutely thrilled at every SUCCESS the kids have made and the fact that they are breaking down barriers and doing great things every day.
The little dragons have absolutely no idea about the mountains they've climbed - or the ones that they'll have to face in the future. And I hope they continue to make progress, fight for survival, and strive for a great life every step of the way.
So, at our annual IFSP (Individualized Fanily Service Plan) meeting today, we talked about goals and tried to figure out a strategy for EI therapy for the little dragons over the next nine months. They will officially graduate from EI services at their 3rd birthday in June, and from there we will be in a whole new world.
James will receive PT and OT to help him catch up in his gross and fine motor skills, which he is significantly delayed in. While James has made great progress, the tests only look at skills, not progress. James has graduated speech therapy and currently has expressive language skills several months beyond his age.
Maisie will receive followup with speech therapy and PT through the next six months to make sure she doesn't fall behind. She is slightly behind in gross motor skills and ahead in all areas of language.
A year ago when we did the same annual IFSP, James had no teeth yet and was unable to feed himself. Only two months later he had ten teeth, was feeding himself 75% of the time, and within four months of the IFSP had begun crawling on all fours. During this time James started to experience weakness due to increasing pressure in his spine from the tethered cord and arachnoid cyst. We had no idea; had we been able to address these issues earlier perhaps it would have made a difference.
This time last year, Maisie was still cruising and hadn't begun walking on her own yet. That would happen three months later. She preferred to eat things with a smoothie texture because she still lacked proper tongue control from her Macroglossia. Maisie spent her week in the PICU from Enterovirus, Rhinovirus, Bronchiolitis & Pneumonia. She continues to struggle with respiratory issues and we worry every second of the day about impending illness and overexertion - and what the future looks like for her lungs.
The tests don't look at the child, or what the child has gone through. It's a yes or no - with zero adaptation or room for commentary. This is where we love our medical providers and the group of specialists that we see- they value PROGRESS versus comparing our kids to every other person on the planet.
These kiddos are important; they are the little dragons, who have survived the impossible and are changing the world, one day at a time.