UPDATED 12/25:Here is the news story on Channel 8 (ABC), covering our first chance to meet Johnston's family. Thank you to everyone for letting us know that it had been fixed online. We couldn't wait to share this with you!Thanks so much for your wonderful...
Today, we received the best gift possible. Today, we met Johnston's parents and brother! We are...
I would really like to start off this post with a BIG thank you to Susan, Terri, Kathy, and Amanda at Children's. I'm not sure any of them will ever read this, but I would be remiss to not mention that their hard work resulted...
Tomorrow will be a busy day for Keegan. He has a GI appointment, IV infusion of the new immunosuppressant, pentamadine breathing treatment, weight, labs, and port reaccess. Most of it is routine except for the GI appointment. Keegan will probably disown me one day for...
...or maybe a more appropriate title would be Musings on Why I Had a Breakdown in the Target Parking Lot. Not sure which has a better ring to it.I should be sleeping right now. That is the truth. As any mom of any child, healthy...
Here are a few pictures from the rest of our week...
...all the wheels were turning in the general direction of home today. Getting ready to be discharged is always a bear, especially with TPN and tube feeds. But at least it's not with dialysis! I did not hear back from the care coordinator to know...
Sunday was much the same as Saturday. We will see what GI says tomorrow morning, but after discussing everything with the doctors this morning, it appears tomorrow will be consumed with getting Keegan ready to be discharged...
Well, it was a pretty typical Saturday at the hospital today. Labs, vitals, chest xray, and meds. Keegan lost more weight today. That's another typical Saturday at the hospital...