Sunday, September 23, 2012

Finley 14 months : Unveiled

Finley is, at times, a tough nut to crack.  He shows us what he wants, when he wants and while it can be exciting at times, it's also like holding your breath… it's painstaking and methodical, but when you let it out it feels so good!  This is life with Fin.  We have our ups and our downs, we have our plateaus and our breakthroughs.  The good weeks are the breakthroughs and the plateaus are… well… a monumental act of perseverance and patience!

Medically speaking, we are in a good place.  The things that might have gone wrong by now, have not and so we count our blessings.  From a developmental standpoint, Fin is in catch up mode, but we try not to look at it that way.  It has become apparent that his traumatic beginning has not only made him tough and resilient, it has also allowed him to develop at his own pace with no one hanging milestones over his head.  Because, really, that would be unfair.  

Fin in the "ball pit" with his buddy, Parker.
He is surrounded by people who encourage and teach and celebrate all the amazingness that is FINLEY.  He unveils a little bit more of himself every day and it is truly a wonder.  With that said, here's what's been going on in Fin's life lately:

He turned one August 1st!  We had a small gathering here at home and he enjoyed all the attention.  There was a time when having a lot of people around would have been difficult for him, but he handled it with no problem.  Thank you to all our close family and friends who came to celebrate his big day!

Fin is now officially a "butt scooter".  He has never been a big fan of tummy time and although we work daily on weight shifting and crawling positions, Fin has decided to hell with all that, he's super comfy on his butt so let's scoot!  We have the MOST wonderful Physical Therapist EVER, and we are still working towards crawling and walking, but Fin decided that he couldn't wait to be mobile.  He's now a total maniac, scooting all over the house, exploring all the nooks and crannies that previously he could only see from a distance.  To Lori, our PT, we can't thank you enough for all your love and dedication! 

Fin at physical therapy with Lori, PT extraordinaire.
 Now, on to eating.  Sigh.  Deep breath.  Let's just say, we are working on it.  Fin is very interested in food, he will play with food, allow food on his face and recently he will pick up a spoon, dip it into some puree and actually feed it to mom and dad but he's not really loving having food in his own mouth.  Oh, it's a long story.  Suffice it to say that with all the trauma he's suffered in his throat (intubation, NG tubes) coupled with such a delayed start at actually trying to eat by mouth, he has some pretty serious oral aversion.  Add to that his problem with retching and gagging (nissan fundoplication, g tube, volume intolerance) and that equals pretty much no eating by mouth.  Thankfully, we have an amazing team of therapists that are dedicated to overcoming this problem.  For now, he is 100% g tube fed.  We've gotten used to it and although we get some strange looks sometimes, I tube feed Fin at restaurants, parks, the beach… wherever an oral eating child would eat.  We don't let his g tube stop us from doing anything. 

Fin and Daddy rockin' the beach!
 Complications aside, Fin is doing what every other child his age is doing… he's growing up!  He's learning to move his body, to socialize, to verbalize, to let us know what he wants and to eat.  GO FINLEY!!

To "Team Finley" - Thank you Lori, Clarisa, Michele, Dr. Rabizadeh, Dr. Shew, Lauren and Patricia.  We wouldn't be here without you. 

You talkin' to me?
Thanks for reading, much love to everyone!!

xoxoxo Fin, Daria & Rick

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