Thursday, August 4, 2011

How we roll...

This picture is pretty much how we roll these days....arm in arm (and yes, me in a neck pillow....don't hate I have to keep from getting cricks in my neck!)


I know its kinda blurry, but the room was kind of dark.  klp pretty much sleeps the days away.  He will wake up and eat and talk a little, and then go back to sleep.  They say thats what these kids do.  Besides feeling yucky from the toxins built up, his red blood cells are low, so he's got a double whamy for energy zappers.  He is in dialysis now.  This time they took him to another room.  Don't they know I don't like change?  Especially in hospital situations, I like staying in my little cave of a room.  No need to leave....but they made us leave today.  My MIL is in the room with him so that I could visit with some friends who stopped by and so that I could take a shower.  We have a bathroom in our room, so that is nice.  Kanyon's numbers were all a little low, so they are giving him another blood transfusion with his dialysis.  They said its not uncommon for kids to need 2 transfusions a day with this.  Yesterday he only had one, so we are hoping this can be his only one today.  YEEEESH!  Other than that, not much has changed.  I am just hating that his body is still so sick. I think that makes a lot of things harder. His treatment today was 3 hrs. and the plan is to take tomorrow off, do another one Saturday for 3 hrs. Then take Sunday off and as long as his numbers stayed OK, we will continue skipping days. 

Boy is this ever a game of patience. I think next time they transfuse Kanyon, I should ask for a patience transfusion!! :)  My MIL is here with me, so that is good and we are having lots of friends stop by to visit. I think I'm in a good mindset for dealing with this but I do feel like I NEED things to keep going right. As long as we are on a normal path, then I can handle it. I'd just like to avoid any detours or road blocks.  So far so good, so we will keep on truckin'.....or as you saw in the picture, keep on laying in the bed arm in arm! :) 

10 comments:

Susan @ Blessed Assurances said...

oh sweet, sweet cousin! I just LOVE you guys & hate that this is the road you are having to travel today. But let me say, you handle it with DIGNITY & GRACE and I am proud of you & inspired by you! That picture is too die for sweet but I know you would do ANYTHING to post a pic of your boy--laughing & scootin' across the floor. i pray without ceasing that he continues to make strides to kicking the HUS to the curb & gets lots & lots of rest. Big hugs via the internet!!

Ashley said...

What a precious picture. Still praying for you guys!

Go To Girl said...

He's such a beautiful boy! I love that he gets to snuggle you all day. That's got to be a great healer, right?

linda ford said...

We will pray for no detours or bumpy roads, Jaymie. Remember, God will not put more on us than we can bear. All of our thoughts and prayers are with you during this long haul to getting well.
Love, Linda

sharon said...

you are the best mama. EVER!!

Anonymous said...

Vicky Pruitt...Still here/with you all. Still praying for yall and thinking of Kanyon throughout the day. (I) Pray for no detours. Pray for a brisk three hours for dialysis and transfusion. (I) pray for good health for Kanyon and for HUS to go to the devil! God bless yall. Love yall!

Jodi said...

Be still my heart, that could quite possibly be the sweet picture in the history of pictures.

Love you. Hugs. Prayers. Love you.

The McCarter Family said...

Praying without ceasing to the God of all miracles! Love you!

Anonymous said...

We love you and are praying with you and for you!!! Everyone I've talked to who has stopped in to see you guys mentions getting a sweet Kanyon smile! :-) Hang in there, Jaymie and Kory. Love to you all,
mm

Jane W. said...

Jaymie, Bless your hearts. Beth updated me today with the latest in the Phillips family. Please know that our SS class will bow their knees on your behalf. I admire your strength and grace in these scary situations that you have found yourselves in. God is truly enough...and you are a witness to his sufficiency. God bless you and yours...hugs sweet friend. Momma J