Once again I had hoped that the boys would sleep in but no go.  We're going to have to try to get them to sleep early tonight because Casey has to get up 'before the chickens' as Nancy H would say.

Colin got his shower.  Got him in his game day clothes.  Isn't he handsome/cute/etc? 

Colin and his Tom Brady bobblehead

Casey got his gear on, too.  

 Casey with his gear on and Daddy's football from when he was little

I have two handsome dudes!

And, speaking of handsome, we gave Jaxon a bath earlier.  Funny, for a dog that is supposed to love water, he HATES taking a shower.  But he smells so much better and his bedding is all fresh  and clean.

Fresh and clean Jaxon

We've been having problems with our Comcast TV and DVR.  It's been shuttering and stopping both during regular watching and during the DVR.  Well, we're trying to watch the big game and can hardly stand it because the quality of the picture is so poor.  So, Gene decided to reset the modem.  I guess it wasn't the best idea because now we have nothing.  It would go in a loop of reloading and then just stop.  Sigh.  Good thing the Patriots are losing--well, you know what I mean.  So Gene got on the phone with Comcast and they tried to trouble shoot but it looks like we need a new cable box/modem/hard drive thingy. They'll be here between 1 and 3 PM tomorrow.  But, Gene saved the day and hooked up the box from our bedroom so we could see the last of the game.  Oh well, Patriot's will get 'em next year!

AC came over for a little bit but wanted to head home before it got too dark.  It snowed about 3 inches last night and started up again this afternoon and she is not a happy driver in the snow.

Tomorrow is Casey's bronchoscopy.  Nurse Julie is getting here at 5:30 and we have to leave here at 6AM.  Check in, IV and all that and then procedure at 7:30.  Please send prayers, good thoughts, good vibes our way. 

Kaitlyn Pas

Kaitlyn Pas earned her angel wings this morning. She was 8 years old. She had SMA type 1 like Casey and Colin. I've 'known' Kaitlyn (cyberly anyway) since she was an itty-bit. For several years we were Secret Santas to Kaitlyn and her big brother, Liam. We always had fun picking things out for them! Kaitlyn will be missed greatly by so many people. She is very loved. I ache for her family and caregivers and friends. And, I feel a special ache for her baby sister, Dawn, who will grow up without her big sister.

http://www.oursmaangels.com/kaitlyn/

I write about Kaitlyn because I "knew" her for so long. Three other SMA kids earned their wings this past week (just that we are aware of) and I didn't write about them--not that I didn't care or that their deaths didn't affect me, but I didn't "know" them as well as Kaitlyn. But my heart can almost touch the hole that these deaths have left in these families. It hurts to see that hole in my head but I can't quite let my heart feel it.

Casey is going to be 14 on Sunday. Why have we been so fortunate as to have him for almost 14 years? I almost hesitate to write this because tomorrow is another day and who knows what the future has in store for us; any of us. It's just so confusing some times. Sometimes I feel like I have everything under control and then a day like today happens, hearing that another one of my kids is in Heaven, and nothing seems clear.

I know it can be a tough life to live having SMA. I see it every day times two. I am so thankful that my boys have been so 'healthy' and have done so much and enjoyed so much despite so many physical obstacles.

Kaitlyn, and all the SMA Angels; you will be missed and not forgotten.

MJ created the following picture...