Ren has continued to show efforts to move his head and limbs as well as over breathe the ventilator. We and our doctors are hoping to give him another chance without the tube in a week or so, and in the meantime possibly giving him a medication that helps reduce secretions to ensure his airway stays clear. As we wait for these changes and give him time to grow and gain strength, we are making moves outside of the NICU so that we will be ready when the next round of test results come back for X-linked SMA.

From day one, Devona has shown where Ren gets his fighting spirit. Mere hours after her C-section, she demanded to be moved from a hospital bed to a wheelcahir so that she could get up to the NICU to be with Ren. If that weren’t enough, she declined all pain meds after only a few hours because she wanted to have a clear head. In addition, she was taken off of all IV’s and was walking unassisted in less than 48 hours so that she could focus on Ren. I can’t tell you how many times I heard words and looks of shock on doctors’ and nurses’ faces when they found out she was walking and declining all medication in order to be available for Ren. It goes without saying that she is a different kind of bad patient, one that isn’t interested in being taken care of because she has bigger concerns.

From the first moment, her determination and commitment has been unmatched by anyone I have ever known and has not been shaken for one minute. She has already made contact with the leading SMA specialist in Texas and gotten everything ready in the event that we find out that this is in fact SMA. It involves the most specialized medical group as well as several late phase clinical trials that are showing great promise with the treatment of SMA. All the while, Devona has been beyond diligent when it comes to providing Ren with the most power substance we can give him right now: mother’s milk.

From day one, she has been on a pump every three hours, producing ample quantities of milk for Ren and challenging him to keep pace with her production. As a result, Ren has been able to be taken off of all IV fluids and nutrients because he is getting everything he needs from his mother. Ren has a feeding tube and is receiving an on-going steady supply of her liquid gold which is paramount. After a few initial, sheepish deliveries of tiny syringes containing only a few mL each, hospital staff has again been shocked and full of praise and amazement each time she hands off more of her offerings. I too, am blown away by her commitment and determination to fuel Ren’s fight. I may be the one keeping the updates coming, but behind the scenes, she is the one that is leading the fight in a way that only a mother could do. When it comes to courage, brains, and heart, Devona is the true wizard of our Oz.