Sunday, July 31, 2016

Nat Year 1

This past Wednesday, our son, Nat turned 1 year old.  He is literally the happiest most fun loving kid that I have ever met.  He sleeps like a champ and rolls through life quickly adapting to whatever is thrown at him.  Just the other day, 1 minute after getting 3 shots in the arms, he was like "Ok cool, what's next."

In Nat's first year he visited Aruba and Yellowstone National Park and took short vacations to Maine and New Hampshire.  He was dragged to countless races (including watching me run the Newton Hills in my first Boston Marathon) and helped me shatter (22 seconds) Neil's stroller 5K PR at M.O.M.'s Run (On Mother's day).  He has been biking, running, sailing, swimming, and has already endured a life time of love from his older brother, Neil.

In February during Nat's 6 month physical, the doctor noticed a small vertical misalignment in Nat's left eye.  Coupled with a number of cafe au lait spots on his body (Cafe au Lait spots are a marker for a neurological disorder called Neurofibromatosis, or simply NF), we were referred to see a Neurologist and an Opthamologist at Boston Children's hospital.  Thankful a MRI showed that the misalignment was nothing serious, but a month later the Neurologist diagnosed him with NF type 1.

So what does this mean?  His dreams of being a bathing suit model are probably over.  Otherwise, hopefully nothing other than additional doctor's appointments to monitor him every few months.  NF puts him at higher risk than the average population for a range of things (see the link above), but that doesn't mean any of those will ever impact on him.

As for the eye, the misalignment doesn't appear to be related to NF.  It is classified as "highly unusual" and expected to be fixed through a minor surgery.

As for normal development, he is cruising (not quite walking), but is well ahead speech wise of where his brother Neil was at that age (Just today he called me Dad, not da da, Dad).  He has become quite opinionated and has no problem letting you know if he disagrees with your course of action.

Yesterday, the four of us headed out for the MA State Bike Tour.  This year they added a kid friendly day that is complete with camping (Neil's favorite).  Neil was with me (he got a ride along for his 4th birthday) and Amy towed Nat in the trailer.

In September, Amy and I will be doing the Coast to the Cure bike ride (Amy will probably do the 66 mile option while I will probably run the 24 mile option) to support NF Northeast.  Any / all support  is greatly appreciated.

Scot: https://www.firstgiving.com/fundraiser/scot-dedeo/nf-coast-to-the-cure-2016
Amy: https://www.firstgiving.com/fundraiser/amy-dedeo/nf-coast-to-the-cure-2016

Thanks,

Scot, Amy, Neil, and Nat

Nat Year (July 2015 - July 2016)















On to year 2.

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