Living with HD

This whole blog is of course dedicated to our life living with HD. These are just the first few new moments that share about how we first lived with Hirschsprung’s Disease

Day one post-op

Last night was HARD.  We got maybe 3 hrs of broken sleep.  JC is obviously hooked up to lots of monitors and his respirations were low so the monitor was CONSTANTLY beeping and we thought it was bothering him.  So one of us was constantly standing at crib keeping him calm and silencing the monitor […]

surgery day

Surgery today around 11am/12pm, he will be in surgery approx 4 hours or so……please send all your prayers and positive thoughts. It has been a rough couple days but Joey Coop has been FABULOUS. He is so strong and such a fighter. We are off to get his PIC line done. Will try and update […]

Travel Day one

How do you people w/ more than one kid do it? Traveling w/ two is challenging + ALLL the stuff. There is NO way we could have flown. Thank goodness we rented a mini van, it fit all the ‘stuff’ that comes along w/ two kids. Ella is so EASY going when it comes to […]