Surprised

Since we first found out that Dylan has Microcephaly, I have been saying that I am prepared to be surprised by this kid.  Well, he apparently got the memo, and is already in the business of surprising the docs!

We had a series of appointments yesterday at Dornbecher Children's Hospital, in the Child Development & Rehabilitation Center (CDRC).  We met with two Developmental Pediatricians and three Physical Therapists, all who specialize in children with developmental disabilities.  Together the appointments lasted for over two hours.  Some of the time was spent talking through the details of my pregnancy, our observations of Dylan at home, and a history of the specialists we have seen to date.  But the majority of the appointment consisted of these five specialists evaluating Dylan through a series of neurological exams.  They tested every reflex in the book by poking, pulling, and prodding him.  Dylan was a good sport for a while, but he got a bit overwhelmed after being passed from doctor to doctor to doctor.  He definitely lost patience towards the end!  The worst was a test of his startle reflex and head control, where Dylan was held up in the air, flat on his back in the doctor's palm, and basically dropped 12-15 inches.  They did this multiple times, and each time Dylan let them know he was NOT a fan of the test...although he did pass with flying colors!

After the extensive evaluations, the doctors asked Brian, Dylan and I to leave the room.  We were brought back in a few minutes later so that they could reveal their opinions on Dylan's development so far.

"Well...we really couldn't find much of anything to be concerned with at this point...We are all very surprised by how well Dylan is developing!"

Dylan being evaluated by all five docs at once.
You can barely see his little toes right in the middle of the action.

You see, before they did their evaluations, these doctors had all read the report from the Pediatric Neurologist we saw a few weeks ago.  They looked at Dylan's MRI, and saw how malformed his brain is.  They also knew the degree of Microcephaly he was born with.  They had all seen just how far below the growth charts Dylan's head measurements have been.  Based on what they knew in advance, they were expecting a far different three month old baby than the one we brought into their exam room yesterday morning!

It was so encouraging to hear that Dylan left five highly trained specialists SURPRISED!  I guarantee it won't be the last times you hear that word associated with our little man!

They did mentioned that Dylan holds his muscles very tight, especially on his left side.  This Friday we will be starting Physical Therapy with him to try to loosen him up.  I'm excited to learn from the therapist ways that I can work with Dylan on a daily basis - my goal is to not let him get to the point where he is falling behind!  Other than that, the only issue that was discussed as a possible concern was the amount that Dylan sleeps throughout the day.  He still sleeps a lot, which could be an indication that his brain is having trouble figuring out the sleep/wake cycle.  But I know quite a few babies with perfectly formed brains that struggle with that concept, so as of right now we're not too worried!

All signs are telling us that, at some point in the future, we will go to one of these evaluations and be told that Dylan is falling behind...missing milestones...developmentally delayed.  I am prepared for that day, as much as any mom can be prepared to hear this type of news about the child that, in her eyes, is perfect in every way.  But when that day eventually comes, I will continue to celebrate every tiny achievement that Dylan makes.  I will work harder than ever with him to overcome his challenges, and to give him the tools he needs to succeed.  I will raise him to believe that he is fully capable of anything he puts his mind to.  I will advocate for him as we pass through the offices of one specialist after another.  I will be fully committed to searching for an accurate diagnosis in order to better understand what he will face in the future.

And I will NEVER stop being SURPRISED by him!