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 few others that have been working out on the weekend days, leaving only weekend nights that we are without help. As things go, tonight our night nurse was unable to be here so I will be up all night monitoring Ren while Devona hopefully gets a good night’s sleep. I figured I would us this opportunity to do my best to catch up on Ren’s blog.

I believe that everyone’s experience is different when it comes to having a constant stream of people in your home, the place that is supossed to be your escape from the world, but I can only speak about ours. We have certainly had more than our share of bad experiences with the situation, but we have also been fortunate to have some incredible individuals aroudn us that make this journey possible, as well as successful. One of the toughest things about this all is learning to sleep while someone else is in your home and caring for your child; for us, this was one of our greatest challenges for many reasons. But that all changed one rocky night when a new nurse (complete with an unsettling confidence in herself) showed up at our house and changed everything. For the sake of privacy, I will call this individual Brenda. Once Brenda came on to work nights with Ren, our lives began to improve immediately. She was the first person that was truly determined and dedicated to solve the riddle of Ren at night and wouldn’t sleep until she had (pun intended.) For the first time since we had been home, we were actually able to sleep at night so that we could be effective parents and advocates during the day, just as we wished to be. Her addition was the bridge to a normal life and we are so grateful for her that it is tough to put into words. She has since moved to days (after training other night nurses to be as effective as she was) and has become like family to us. Situations like this don’t come with a playbook, but we just kept toughing it out until someone came along that cared about Ren as if he were her own.

With consistent care (for the most part) in place, we have begun to be able to address Ren’s issues and push our medical team to achieve the results he deserves. Once we had come home form the hospital, Ren was becoming more and more oxygen dependent until he was finally in need of O2, 24 hours a day. It should come as no surprise to anyone that Devona researched and determined that Ren’s issues with oxygen were due to the lack of proper pulminary support and she quickly went to work, setting in motion a plan to remedy this problem. Devona figured out that, without proper BiPap settings, Ren’s O2-Co2 exchange had gotten out of line and feeding him a constant flow of O2 blow-by was only making the situation worse. We made an appointment for a sleep study in order to figure out what was going on, and added our name to a waiting list since the next available appointment was months away. Finally the day came when it was time to check into the sleep lab at Children’s hospital and spend one of the worst nights of our lives looking for answers. The details of this experience are long and painful, but with Brenda by our side, we all made it through. Once discharged, Devona reduced the 2 week wait for results to a few short hours. In case you haven’t realized it by now, she can be terribly convincing when it comes to her son, and that next day we had the new settings for his ventilator that we were told would take 2 weeks. We changed Ren’s machine’s settings and after only a 2 hour nap on those settings, we were able to take oxygen away form him and have never looked back. That was 45 days ago. When Devona isn’t enjoying long walks on the beach, she can be found teaching doctors a bunch of shit they should have learned in school. Once again, I can’t say enough about this woman.

For over a month, Ren has been oxygen free and is making great progress with his therapists. A few days ago, he held his head up, unassisted, for close to a minute while working with his physical therapist, and is swallowing more each day. His movement in his arms and legs continues to show improvement, and his drive to chew and suck on a pacifier very promising. One of the biggest changes we have seen is that Ren is finally able to tolerate a more upright, seated position so he can experince his surroundings independently from the proper perspective. He is now able to join us wherever we are while seated in his wagon that he have modified to accommodate him. It’s amazing how something like this can change the dynamic of daily living for a family with a special needs child.

Ren is big fan of being read to and working with toys that light up and make noise. I have known of friends that cringe when a new toy shows up that makes a bunch of noise, but for us they are a delight bc they really fascinate and motivate Ren, which is exactly what he needs. He is making efforts to reach and grab for these toys and beginning to understand that his body is his and can be moved with some hard work. As much as we love to see him work and be rewarded, he also love to lounge on us and be read to while me come up with silly voices for all the characters in his favorite books. Ren is very curious and so alert that sometimes it is almost startling when you catch him looking at you with such intensity.

We are fortunate to have some great therapists around us and are particualrly excited about the strides Ren is making with his physical therapist. She is incredibly knowledgable and  works Ren super hard, but he seems to enjoy the cheering section he has each time he  does something amazing, which is often. He has been working hard at sitting with lots of core support so that he can hold his own head, as well as kick his legs from the hips. The head control is something that we are focused on right now bc we have had two failed attempts to get a 3D image of his head at Cranial Technologies, in order to have a helmet made in order to round his head back out since is got a bit mishapen from so much side lying. In order to get an image, Ren is required to hold his head steady and straight so we are doing our best to set him up for success on our third attempt on December 27th. We will also be seeing the ortho team for the first time on the 38th in order to begin addressing his spinal issues and rib cage. He will undoubtedly need a brace of some kind, so we are hoping he is a candidate for one (assuming his respiratory issues do not prohibit him from wearing anything restrictive.) It is a great feeling to have Ren stable enough to begin addressing some of these other issues that were previously just too much to even think about. We have also have appointments with a facial cranial surgucal team to investigate Ren’s airway bc they seemed to think it was causing him breathing problems that would require surgery. After a few appointments, a CT scan, and a conference with his team, is has been determined that he in fact does not has an airway issue that is causing him problems. This is great news bc it means that his rapid and shallow breathing are due to his abdominal strength which will continue to improve as he grows and uses his bipap for support. And as far as growing goes, Ren is finally on the growth chart!!! We have been working hard to accomplish this with his feedings and tolerance, and as now our little guy in 14.5 pounds which is good for him as a neuromuscular fellow.

This week I will be adding a bunch of photos and some video of Ren to this site, so be sure to check back to see what he is up to. Thank you for the continued interest and support of our little warrior.

-W