Day 2 Down

It was another long day in Minnesota.  Today was all about developmental assessments.  Waverly and Oliver underwent a battery of tests to determine their developmental age across a multitude of categories - emotional, social, fine motor, gross motor, receptive language, etc.  They were both troopers.  It is tough for kids to have a toy put in front of them and complete a task, only to have the toy taken away for the next task.  Not a lot of free play time during these appointments.  They also both participated in 2 research studies for children with Sanfilippo.  One was recording brain waves when listening to consonant sounds and watching facial expressions.  The other involved fear and startle responses.  Both of them were easy and very interesting.

Tomorrow is the toughest day of our visit.  We have to be at the hospital *very* early for tests.  Both of the kids will be sedated for 3.5 hours.  They will have an MRI, ABR, blood draw, etc completed.  They will also each have a lumbar puncture.  They have never had to have one before, but it is a vital component to the study.  We have met the doctor who will be performing this procedure and we feel confident in his abilities.  Kids with MPS tend to have difficulties with anesthesia, but we haven't had any major issues in the past.  It is still going to be difficult to have both kids under for such a long amount of time at the same time.  Please say a prayer for their safety tomorrow.