Four Years of SMA

June 19, 2008...today marks 4 years since we received Riley's official diagnosis with SMA.  In someways I feel like it's been longer than 4 years just because we've been through a lot, Riley's been through a lot, enough to last a life time.
                     We've endured feeding tubes and g-tubes

                                                                surgeries

              
                                                                  Bipaps

Intubations

Countless number of tests and procedures

Tears, heartache and goodbyes

These past few years have brought an incredible sense of loss. A loss of a life that didn't turn out as planned.  It has taken the past 4 years to overlook that loss and get on with a new life, a life of hope and adventure.  Would I love for Riley to walk, to run, to talk and tell me he loves me? Absolutely! However I fear that If I were to trade those in I may lose his patience and courage. His zest for life and all the people in it.  His tender heart and sweet spirit.  His closeness to heaven and the presence of our Heavenly Father's love.  Riley was given a greater gift than any of us could imagine.  He is the greatest example of faith and the eternities.  I love Riley for who he is and I can't imagine him any other way.

Father's Day

Happy Father's Day to some of the best Dads around

 

so much for swimming

Well folks it doesn't look like we'll be doing much swimming this summer, at least not for a few weeks. Yesterday afternoon when Marc came home to relieve the nurse she said that he had been more fussy ever since she did his range of motion.  He also hadn't taken a nap so we just thought he was tired.  Marc then took Riley down to his parent's house for a Father's Day dinner and he called me to tell me that he had been crying a lot and he was acting like his leg hurt.  Since the nurse had been doing range of motion my thoughts were that maybe his hip had popped out a little and it was uncomfortable.  At 2:00 AM Marc called me at work telling me that there was something really wrong with Riley. He had hardly slept and seemed very uncomfortable.  He gave him some more Motrin and repositioned him which all seemed to help.  When I got home in the morning I woke him up and moved him to change his diaper and he bawled for 20 minutes after.  OK, yes something is definitely wrong.  You couldn't even touch his leg with out big alligator tears pouring down his face.  We decided it was probably best to take him in to at least get some x-rays.  I want to back up for a moment.  Back in February when Riley was in the ICU I had that terrible experience with that Resident Dr and yelled at him at told him to get out of the room!  Well, we are the luckiest people ever because he was the ER Dr. today! Needless to say he remembered us (how could you not) and he did a look over at Riley and then just turned him over to the attending Dr. It was probably for the best. Anyway, they were perplexed that both legs seemed to hurt all over so he went down the list of possible causes ranging from fractures to a bone infection which could only be ruled out through a needle biopsy, which this was highly unlikely because he wasn't exhibiting any other sings of infection.  So we started of with the x-rays and sure enough BOTH legs were broken in the same place.  They call it a buckle fracture. Basically the bone is pushed and bends or folds over.  It's very common in kids because they have softer bones where an adult it would just snap off.  The fractures are at the top of the Tibia so they put him in temporary fiberglass splints and we are suppose to follow up with orthopedic in 10 days an then they will decided what to do.  Because he doesn't weight bare they might just continue the splints until it heals but we will see.

This is one tough kid!

Get better soon Riley so we can get back in the pool!