Some wonderful friends of ours, Dan and Serenity Johnson, recently put out a new album and on it, they recorded a beautiful song for Maximillian.
I know I have been telling quite a few of you about it already, but just in case …you can read the lyrics and listen to it here or in the [...]

In talking with some friends this past weekend, I realized I had been reluctant to update all of you on Max’s final “clinical diagnosis” from our last meeting with the genetic counselor … I am sure my reluctance is due in part to the gravity and future-impacting nature of the results. I have attached Dr. [...]

Jodie and I would like to invite you and your families to join us in celebrating the life and joy of our beautiful son, Maximillian.
On Thursday, May 21st, between 7 PM and 9 PM, join us in commemorating baby Max in the Student Union Building at Florida Christian College in Kissimmee, FL. Southside Christian Church [...]

With Maximillian in his arms to the very last second, right around 3:30pm, Daddy and Mommy finally handed over their son to God and welcomed him home.
“Better is one day in your courts, than a thousand elsewhere … For the LORD God is a sun and shield; the LORD bestows favor and honor; no good [...]

Family meeting with medical team at 2pm was a difficult meeting for everyone. The room was packed with supportive staff, Susie, Steph and Colby. Dr Alana began by stating than as we knew Max began this journey facing many major obstacles. His congenital issues were not going to improve, such as his brain and intestinal [...]

“Jodie and I are at the hospital now and Max’s room was full people … two RNs (Holly and Jenn) and two RTs (Ron and ?). Jenn let us know that Max had a really rough night and day so far … his potassium is still high (though the continual albuterol doses have brought it [...]

“Jodie, Steph and I just came back from the shift change and little Max’s potassium level is still high. Before she left, Jennifer called the doctor and he prescribed an aerosol medication (albuterol) to help with the potassium level. They administered one dose at 6pm, will do the next at 9pm and will check the [...]

“Max’s electrolite levels (specifically potassium) are high right now … his RN Jennifer is working to find the problem (two small IV blood draws so far) and lower it, since too high of a potassium level ‘can be lethal’.”
“While she was testing his levels, she let Dad change his diaper … he definitely put it [...]

Max got to spend some time yesterday with pretty much all of the immediate Cortez family (we missed the rest of you) … at one point there were even 4 generations in one picture! As you can see from the video below, while he was with Aunt Margie, he even did a bit of breathing [...]

Jodie just sent me these two texts:
“The RT named Vorarut just came in to check things and reminded me that Max is on the lowest setting(s) for his ventilator and the next step if they can ween him off of the respirator is called a C-pap. It is a different kind of breathing system that [...]