One of the things that I have the hardest time with is getting everything done ( house cleaning, entertaining etc. etc!). Part of it is being lazy but the other part is Ty takes up a lot of my time. Just like any kid, any time you do get something clean they are quick to unclean it. Unless I am entertaining him he is trashing EVERYTHING. He doesn't play on his own at all. ( I guess you can thank his non imagination play!)
So I decided he MIGHT benefit from Story Time at the Library. We don't live that far from the Library so today we checked times, called and made our appointment( limited space) and we left and walked to the Library. Tyler loved it.
We came home, ate lunch and off we went for our weekly therapy in Salt Lake City Shriner's hospital for Children. Therapy today was just PT. Our Speech Person canceled while we were there. Kind of disappointing given that we have a bunch of words. FINALLY!
One of the things we are working on with Tyler is balance and distance. He can't walk on his own for a long period of time. Though he tries really hard it just isn't possible. He holds onto one of our hands for stability. If he didn't do that, every 500 yards or so he would/does fall. Hence the broken nose and stitches a few weeks ago.
One of the other things we have thrown in to the mix is riding a bike. Shriner's has this really cool adaptive trike. It is big enough that he would be able to use it till he is like 150 pounds or more. At the rate we are going he would be 20 before he out grew this bike.
The trike is called the Rrifton. It is Lime green and awesome. I seriously LOVE this bike. It comes decked with foot extenders so he can easily and quickly pedal and man can he go. BUT WAIT... there is a catch to the bike. $1500 dollars worth of a catch! ( unless of course a nice person knocks on my door with a check!!)
FREE! Now don't go and get over excited on me. We don't have one yet.
The Catch- The REAL catch!
There is a waiting list.
AND Ty has to show he is interested on his own ( check SORT OF) and be able to do 5 rotations on his own. ( check, check) This has to be done for several PT visits before we can be put on the list. I am not sure how long the list is but don't you think it would ROCK for this kid to have THAT bike!
After riding the bike Tyler was pretty spent. When things are hard it is like pulling teeth to get him to participate. We did and we kept pushing. Our therapist, Mark, is really good about standing firm and not letting Tyler get his way. He never comes right out and says it but he thinks Tyler is spoiled. ( I know... not my child) He is constantly telling me how much Ty would benefit from "other" children, like a sibling. ( Gee really! Thanks... and if I had a DOLLAR for every doc/therapist/stranger on the street that said that to us, I wouldn't have to wait for the dang waiting list for THAT BIKE!)
When therapy was over, we visited the prize box. Ty is slowly getting not impressed with the box but he was happy with a Tinkerbell sticker book. He told Esther "BYEE" and off we went.
What makes Shriner's the " Almost happiest place on earth?" It is run solely on donations. The Mason's and other private donors give to this wonderful place and their donations make it so that kids like Tyler get to have therapy that would otherwise be to expensive and therefore non-existent.
In recent years, the donations and cost associated with the hospital and the care has gone up. They will now charge your insurance BUT what your insurance doesn't cover they will pay for. You never feel obligated in any way to pull out your debit card and pay a balance or cry at night because you can't ever pay them enough.
Instead we find ourselves thanking those who are able to donate and DO donate. It is because of their charity we feel that Tyler is doing so well.
What do you think of the BIKE!!?