Developmental Pediatrician

On Monday, March 14th we went to see the Developmental Pediatrician for the first time.  A friend at work scheduled a meeting for me a couple months ago with one of the Developmental Nurse Practitioners (NP) that rounds in our NICU.  During this meeting the NP explained what a Developmental Pediatrician does - they take care of special needs children and would help us benchmark Sophia with children that have similar functional abilities.  This sounded like a great thing, since at Sophia's 4 month check up she only passed one of the developmental categories for her age, she failed the other five.

Our visit started with about an hour of Q&A.  The doctor asking the questions and us providing answers.  We answered questions on everything from our educational background and work, to our family and of course my pregnancy and our medical histories.  We delved deep - she definitely got all the info she needed.  Next, she examined Sophia who was asleep in her carseat.  The doctor really took her time listening to Sophia's lungs, heart & stomach.  Then she checked Sophia's muscle tone and reflexes - there has been concern that Sophia has too much muscle tone and that her reflexes are overexaggerated.  She said that she felt that her tone and reflexes are good, however when she gets angry she tenses up and then they appear to be too much.  1st bit of good news in a long time!  Then it came time to wake our sleeping beauty.  She was a trooper.  We did lots of exercises with her - trying to see if she could see certain objects and hear certain noises.  She wasn't too good at "seeing" the objects but she sure could hear the noises.

Then the doctor and Sophia got down on the floor to do some exercises.  First, she again tried to get Sophia to track objects moving in front and around her.  Then she had Sophia do tummy time to see how strong she is - Sophia was able to lift her head off the ground and push up with her forearms, we are going to keep working on getting her to fully extend her arms for a full "push-up".  Next came her assisting Sophia to roll over, to which Sophia surprised us all by rolling over twice in about 5 minutes!  I was so excited - I had never seen her do this!  Rusty and her teacher had each seen her do it once before, but never for me.  2nd bit of good news!  We followed her rolling by trying to get her to sit up.  This was more comical than anything, as she just kept falling over.  Sophia doesn't have very good trunk control right now and she gets like a limp noodle when she sits up.  We'll have to keep working on it.  Sophia does do good "baby crunches" - where she lifts her head and legs up at the same time.  Her doctor was quite pleased.

So after a 2 hour 45 minute visit with the Developmental Pediatrician, she told us that she was pleasantly surprised by Sophia.  She said that she had expected so much worse.  She said that factoring out the visual components of the testing, Sophia is about 1 month delayed in her fine motor skills and verbal development, but we will continue to work on it.  Her gross motor skills appear to be right on track!  She pledged to be here for us until Sophia is 21 years old and to help us with her development until then. She also commented on what a sweet and happy little girl Sophia is - to which we completely agreed.  We were so excited - I can honestly say that this was the first doctor's visit that Sophia has had since we found out about her Aicardi that I haven't left in tears.  I feel so positive and happy.  She really focused on Sophia's abilities and maximizing them, rather than focusing on her potential shortcomings.  I definitely look forward to her next visit in three months.