another day, another Dr's appointment

Well, its official my life now officially belongs to the Dr's, nurses, and therapists. Since his WS diagnosis we have atleast 1 appointment everyday, its really starting to wear on me and Dylan. I just feel like I'm constantly sending Dylan to a sitter so I can yet again go to the Dr's. I'm starting to wonder if this will ever end! Right now, anyways, there doesn't seem to be an end in sight. Lucas is scheduled to have surgery at Boston Children's Hospital on 7/31 so along with all our other appointment, I'm now adding surgery, pre op, and post op to the mix. Hopefully everything goes smoothly. We are now also trying to get him baptised prior to his surgery.

We also received the final determination for the sleeping wedge he needs, according to the insurance company its a convenience item!!!! I guess I can kinda see were they are coming from, it is a convenience to not have to worry about your 11 mos old strangling himself with his feeding tube, aspirating on his drool, or pulling his feeding tube out by rolling around in his crib.... In the mean time, I have to figure out how to safely put him to sleep, since he has learned to touch the ground while in his bouncy seat, its just a matter of time til he tips it.

I was however, able to get the supply company that handles all of his feeding supplies to send us a different backpack for his feeding tube and pump, the bag he had was taller then he was, this on is nice and small.

Well, its official, at 10:16am tomorrow my DillPickle will be 4yrs old. I asked him what he wants to do for his birthday and his response was "I think it would be nice to go to the pizza place with the games and stuff, that would be nice I think...." So, tomorrow Dylan, Lucas, myself, our friend Krystal, Conor, and Kelsey will all be going to Chuck E Cheese to celebrate Dylan's birthday. I'm determined to make it a really great day that is all about him, he's been such a trooper with everything that's been going on with Lucas, especially considering he didn't even want a brother, and still occasionally asks if we can send him back to the baby hospital to live. It kills me when he says things like that.

When I get more definite information regarding the surgery, I'll make sure I post it.