When life hands you bacon, make bacon bandaids. "Life before death" Eli was discharged from the hospital Friday with normal breathing. The breathing treatment in the Emergency department had gotten things back to "normal", whatever that really is for him. "Strength before weakness" While Eli wanted surgery, that was never a good option. He has …
Month: May 2021
Golden Birthday Week
Unfortunately, I'm writing this post while in the emergency department with Eli while he struggles to breathe. On Tuesday, we began celebrating his (then) upcoming 13th birthday by taking a group of his friends and siblings to a fun center. My friend Amy did they scheduling and planning, including designing and printing the Dungeons & …
How are you?
I've been trying to figure out the best answer to this common, reflexive question, because the answer for the last week or so has been "Not so good" and "please don't ask". Last week we met with the team to discuss the PET/CT and next steps, like how do we make it to the trial …
Eli M.D.
With Eli's continued pain and not so mysterious neck lump, came more visits to the doctor than I like. Eli's eagerness to go meet with doctors, get tests done, and take pain meds was evidence of the discomfort being caused by whatever is inside his body. Monday, we met with the radiation oncologist, since he …
The Risks of Gravity Offset Devices
When things are going well, it's easy to pretend that it will stay that way indefinitely. Life starts to feel more normal. For example, Eli begged me to get him the parts to build one of his inventions. A few pulleys, paracord, and hooks later, he had converted the swingset into a device designed to …