Slowing down to speed up

In just a couple of days we will be a month out from Ren’s 1st birthday. Much has changed and Ren in doing things every day that continue to amaze and inspire. Our team of nurses and therapists has stabilized in a way that makes life feel much less hectic, which has given us the […]

9 Months

Yesterday was the 9 month mark for Ren. Everyday he is getting stronger and we are seeing improvements in his ability to swallow and protect his airway, reduced respiratory and heart rate, and increased interest and motivation to interact with his toys. Compared to a normal 9 month old, Ren is still incredibly weak and […]

Friday night (high)lights

While Ren continues to amaze, so does the outpouring of love from friends and family. We have settled into a routine in our home that finally feels sustainable, although it certainly still has its challenges and difficult days. We have  two primary nurses that cover shifts 5 days a week and a roster of a […]

Nobody Puts Baby In A Corner

It has been brought to my attention that there are people out there have been checking back for updates, and I have not updatedhis blog in two months. There is much to talk about so I will do my best to pick up where I left off and to include as much detail as possible. […]

The Results Are In

It seems like so long ago, but in reality it has only been a couple of months since I was posting about how Devona and I had begun to use doctors’ desires as leverage to get what we wanted; every doctor along the way seemed to have their theory about what Ren’s condition is, and […]

Sorry for the radio silence.

It’s hard to believe that almost a month has passed since my last update. The month saw everything from training on home equipment and rooming in at the hospital with Ren, to discharge setbacks due to a 3 days touch and go episode for reasons no one can identify. Well, after all the ups and […]

Just another manic Monday

Preparations began early Monday morning and by 9 o’clock Ren was ready to head downstairs to undergo his surgery for his G-tube. Before we made our way to the last stop before the O.R., the medical staff drew blood from both of us since we would be sending not only a sample of Ren’s blood […]

Ain’t nuthin but a G-thang, babay.

Two stressed out parents going crazay….. Now that we all think we are Snoop D-O-double G, let’s move along. As parts begin to move toward coming home, many questions arise regarding what needs to be done, but feel much less overwhelming than the ones about how in the world we are going to be able […]

101 Waits to reference

This week my mind has been littered with references to dozens of songs, sayings, movies, and books about “waiting.” I have been told by many that people are waiting for updates, and I can assure you that no one knows the feeling better than we do. This week has been about many things, but mostly […]