D-A-D Dad! M-U-M Mum!
Two video links that might interest you.
Clown doctors at our hospital at home featuring one our lovely friends Sam and Shirley
A beautiful song and clips of the amazing people Attitude TV have filmed, including Aria.
It is a snow day in Omaha Nebraska. Â Blizzard conditions and the schools are closed and so is part of the interstate/motorway. Â The MacDonalds are tucked safely inside watching the snow fall and the wind blow. Â And probably overdoing it on the heating front so now we are half cooking and the kids are running around half clothed!
As well as it being a snow day it is also a tough day.  Aria’s rash is still pretty nasty and her outputs are high, the highest in awhile, they are not improving despite being off feeds for almost 5 days.  We have also been waiting for the phone NOT to ring.  Hospitals work under the assumption no news is good news regarding test results and in particular the biopsy yesterday for Graft V Host.
But of course the phone has rang for a host of other reasons.  Firstly the dietitian rang to say TPN will be delivered tonight (which made me cry after I hung up the phone), Aria’s prograf levels are too low increase the dose, TPN is on the way, TPN is here please buzz us in etc etc.
BUT so far no news about the biopsy and it is 5pm now.  Kinda starting to feel relieved.  Aria’s colon did show some irritation and inflammation which could be the virus still or could be G V Host.  We are hoping for the virus because if it is lingering in her colon it is likely lingering in her small bowel therefore explain the continued dumping.  Aria’s colon and small bowel are not connected so I am hoping I am understanding it right.
Still today I found myself struggling so much with this dumping. Â I just really wish it would stop and get better but there are no signs of that. Â This bowel is so precious and I just can’t handle there being any concern over it. Â There is a constant battle in my head- Lord I trust you but I can’t take this! Â Waiting on the Lord is hard, so hard.
Aria has 4 hours off her pumps. Â She was up and walking around soon as they finished. Â I came out of the bedroom to see her kicking a soccer ball around the lounge yelling D-A-D Dad! Â M-U-M Mum! Â She looked so happy and alive and she was learning. Â Later she wrote her name and did a great job.
In the midst of my angst I got an unexpected text from a friend, a new friend who knows what it is like to trust God during crazy tough times.  She said breathe and know Dad has everything under control.  Wow, what a relief given that I feel everything is spiraling out of control.  D-A-D has it sorted even if I don’t, a loving Dad.  Time to just BE and live and stop battling.
