Tuesday, July 23, 2013

Back to the Grind and Fighting for a Cause

Last week was a pretty slow week for Riley.  Her visual stim therapist was out of town and the school district is off for the summer.  We didn't have any doctors appointments and Riley only had PT on Wednesday and Friday.
All set up in her stander
Taking a walk around Casa Colina
 It was sort of nice but, Riley really needs to stay active and be attending multiple therapies each week so I am happy we are back to our busy schedule.  I think it keeps us all sane and I am much more organized when I need/have to be and lazy weeks allow me to take a break and then get behind.

A couple of weeks ago Logan expressed interest in taking Karate.  We asked him last year if he wanted to do it through school and he wasn't interested so we left it at that.  Next to our local grocery store there is Karate studio and when we make trips to the cleaners or pharmacy or market Logan is always peeking in the windows and then suddenly last week he said he was ready to start.  We are thrilled.  I really think that this will help him with self discipline and listening.  After 2 intro sessions and the memorization of the Red Dragon motto we went with him Friday afternoon to get his uniform and white belt.  The sensei did a small test of moves with Logan and had him write down two bad habits he wanted to break.  He then broke a board with the bad habits written on it.  He was very proud and can't wait for his class this afternoon.
 New karate uniform

Saturday morning Logan headed out with Dave for a special surprise.  Uncle Mike got a boat so Dave took him over to Puddingstone Lake which is 5 minutes from our house and Logan went on his first boat ride.  He was super scared at first but, by the end was asking Dave what the people were doing out on the lake wake boarding.  When Dave told him about what they were doing he promptly asked him to teach him how to wake board.  It was great daddy/son time and I know Dave is looking forward to getting Logan up behind the boat!

This weekend Logan also had a sleepover with his cousins Tobin and Peyton.  They are a few years older and Logan loves to be around them so we were happy it worked out that the boys could spend some time together.  We blew up air mattresses in the upstairs playroom and Dave had the boys all tucked in when we decided to check on them one last time.  Well the boys weren't upstairs in the beds anymore.  They had declared it scary and Dave found them all fast asleep in Logan's room.  It led to a priceless picture! 

Sunday we took the boys out to breakfast and after they left to go home Logan was begging to know when they could do it again. 
Post breakfast suckers!
Silly cousins!
Taking a nap
Hanging out with sissy as Mason calls her
Kisses from Logan

Yesterday we went to Riley's pediatrician to get the ok for her sedated hearing test next Monday.   Riley was weighed and measured and was 22 lbs 3 ounces and 31 inches long.  So happy that she is growing!  Today and tomorrow Riley will have therapies and Thursday she will finally have her MRI.

I am very very nervous about this MRI.  It's keeping me up at night just thinking about getting bad news again.  I know I shouldn't be so nervous but, Dave reminded me last night that it will also be looking at Riley's brain stem.  MRI's are an inevitable part of Riley's life but, the last one she had done was also the MRI that led to Dr. Doom telling us Riley was gone.  The fear of hearing this again or something worse is overwhelming.  I remind myself daily that Riley HAS come so far and that no matter what this MRI shows we know what Riley has done and what she can do.  It still doesn't make it any easier.  Sometimes the doctors who deal with these cases become so numb to the personal/emotional side of medicine that they forget that they are talking to someones mom or dad.  So now I'm trying to figure out how to make it through the week and make it to Thursdays appointment.  And if you can spare any prayers and good thoughts we'd really appreciate them.  We are hoping to see that Riley is still a candidate for the cochlear implants.  If so, this will be the first step in opening this door for her.

In the meantime we'll distract ourselves from the end of the week MRI by attending the local City Council meeting tonight.  A few blocks away from our home is a lot that has been vacant for 40+ years. 
Proposed Rehab Facility

There are plans to build a 15 bed inpatient rehab facility for TBI patients.  You know something like Healthbridge where Riley spent 64 days recovering and we were able to spend time with her as a family in a more "home" like environment.

Well, our neighbors apparently believe that TBI patients are criminals. 
"Opponents' objections included fear that patients would escape the one-story, residential-style 24-hour nursing and rehabilitation facility to buy drugs, commit crimes and cause nuisances. They didn't want the patients using firefighter or paramedic services when someone else in the neighborhood needed such emergency response."

So, we'll be attending the meeting to see what our neighbors have to say.  And, if the time is right and I am given the opportunity I will speak on behalf of TBI patients like Riley and share Riley's story.  It makes me sad to think that in our own neighborhood people are going to fear my daughter.  I always believed we were in the right place to have the support and community feeling that we need and wanted for our children and family.  I guess I was wrong. 

This local news story has only fueled our desire to Fight On!  And so we will.

Dave, Megan, Logan, Mason and Courageous Riley

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