We've been Busy

LJ in his new wheels playin'  Mario Kart 

I hope everybody is having a great week so far, enjoying the lovely weather.  It's always hard getting back into the swing of things after the weekend.    It was a nice weekend too.  We have had a lot going on lately.  I got so tied up, I forgot to write it all down.

Mario Kart again

     LJ finally got his wheelchair, like his very own wheelchair to ride in.  He had been using a loaner stroller from the loan closet, but now he has a chair of his own that he can get around in.  Of course the main objective is still working on walking, but with him starting school in September, he has to have something to be transported on the bus in.  He got to pick the color himself, and he chose green.  He loves it because he can roll around and go wherever in his classroom at preschool, and he is really good at getting around in it too.

     We had his placement meeting last week with the school district to find out what school he will be going to next year too, so that was pretty big.  I am so nervous about my baby actually going to school for a whole day.  I think I'm more nervous than he is, but he's never been in school, so he don't really know what to expect, lol.  I've been there, done that.   The program that he is going to be going into is call the GEM (Growth and Education for students with Multiple disabilities) program.  It is the only one in the district that will challenge him academically, while catering to his medical and physical needs.  I am planning on touring the school next week so I can get a better idea of how LJ's day will be, and hopefully feel a little more comfortable about it myself since my baby will be away from me all day.

     This weekend, we had the most amazing weekend.  In preparation for LJ's birthday, we went to go stay at the Brian Bisgrove Home of Courage.  I promise you, it was a wonderful experience.  They welcome families of children who have life threatening, or severe medical conditions to stay for an entire weekend, free of charge, and spend family time in their beautiful cabin.  Food is provided, there are activities, there is a lake nearby, and it gives you a chance to get away from the chaos of life when you deal with the things that we are so use to dealing with.  I urge you to please check out their website to find out more about the home, and how to register for this fantastic opportunity for your family.  Its is truly one that you will appreciate.  I cannot thank everyone at the home enough for their hospitality, and generosity.  It was so very much needed.  LJ loved it, once he adjusted to life without wi-fi, lol.  Seriously, I could not have asked for more.  It was perfect, and so relaxing.

The cabin how it looked when we arrived, so dark, but still beautiful

A better view in the daylight

My big, strong man

He wanted to go topless, lol

I love that smile :) 

Just chillin'

Just the two of us

Love of my life 

A Special Thank You

Traveling back and forth to Boston for LJ's appointments is not only stressful, but can be extremely expensive.  Sometimes, like this last time, we are lucky enough to to have the opportunity to be catch a flight.  For that I have to extend my deepest thanks to the folks at Angel Flight.  They are so amazing!  They have been such a huge help to us on a few occasions, and it has been a huge weight lifted off my shoulders each time.  The pilots volunteer their planes to fly patients and families with special medical needs to and from non emergency medical appointments free of charge.  They are a God send.  I heard about this program from my social worker at the hospital here in Rochester, NY.  You can go to their website to find out more information, but you call to request a flight, and if there are pilots available, they will sign up to take you and pick you up.  It's pretty much that simple.  They have some of the nicest people there, and I absolutely love them.  The only thing is that someone has to sign up to fly you, and usually it depends on the weather, but other than that, if they can find you a pilot, it is such a stress reliever.  I mean honestly, there is enough to worry about.  Take it from me, they picked a perfect name.  I just wanted to let you guys know that.  Please check them out if you have never heard of them before.  They may be a resource that could be helpful to you or your loved ones.  I am so thankful for them.

Us on our way to Boston, it was windy! Such A Great Pilot

LJ relaxing on the plane

Just landed with another Awesome Pilot!