Monday, April 8, 2013

Looks like he's gonna make it

Then and Now

Although different than most, our normal is ours and we have grown very much used to it.  I would venture to say it's quite different and far less scary than the future we envisioned 2 years ago when we received the diagnosis.  Several weeks ago, several family members were over.  Noah, a middle-schooler who has done several lemonade stands for Tyler and has a heart the size of Texas was discussing the syndrome with me.  Several days later, he is over again and playing with Tyler.  He has done some more research on the syndrome and is rattling off facts.  I know each of these statistics.  I think they will forever be etched in my brain because in the beginning, it's all we had.  A percentage.  A number.  Digits giving us the likelihood of our son being able to walk, dress himself, or survive.  That is where Noah stops.  "Did you know that if someone has Wolf-Hirschhorn syndrome, there is a 34% chance they will die before the age of two?" he asks. (I did.) A huge grin follows as he knows Tyler is turning two in the upcoming weeks.  "Looks like he's gonna make it!" he exclaims.  I can't help but laugh out loud at his matter of fact tone and innocence.

Tyler turned 2 last week.  He is doing great.  Yes, we have the occasional health scare but for the most part he is healthy and happy.  We are the lucky ones. A tradition of birthdays for WHS parents is to compile a list of accomplishments.  I think it helps quiet the scary statistics for a newly diagnosed parent of a child who will most certainly be searching the world wide web in search of a glimpse into their future. 

Tyler weighs in at a whopping 24 pounds and 12 ounces.  This is a giant compared to most of the kiddos.  He can sit unassisted.  He recently has been working on pushing to sit up and I have attached a link to a video of him working hard during a PT session.  He can follow several instructions such as: turn the page, arms up, give a kiss, and open your mouth.  He can appropriately shake his head no when asked to do something he doesn't want to do (and does this very often).  He can stand with assistance for short periods of time.  He can bear weight on all fours for long periods of time and we are working hard on crawling.  He recognizes familiar faces.  He responds and recognizes his own name.  He loves Yo Gabba Gabba.  He can sign "more".  Tyler is starting to show preferences whether it be to a tv show or toy.  It is exciting to us that cognitively he knows what we wants but unfortunately he doesn't have the skills to express those wants.   He isn't at the point where his motor skills are capable of doing most signs for sign language and the verbal skills also aren't there.  We are beginning to explore alternate methods of communication to ease the frustration we are starting to see.  He continues to amaze us and we are excited to see what the next year will bring.  Go, Ty, GO!

You Tube video of Tyler during PT