After a weekend full of family time with his aunt, uncle, cousins, and Oma, this week has been all business for Ren. I returned to work this week so I apologize for not being as good about keeping everyone updated, as there is much to tell. Going in to the weekend all the pieces were being put into place for our move from Seton to Dell Children’s Hospital. On Tuesday morning the machine started moving and by 1PM we were saying our goodbyes to the wonderful doctors and nurses in the NICU of Seton, whom we have grown close to over the last couple of weeks. The head of Neonatology stopped by to ask how we were doing and to let us know that he has been impressed with Ren’s fighting spirit as well as how we have handled our role in this trying time. For a man that is known as much for his reserved and clinical bedside manner (by both staff and patient’s parents) as he is his brilliance, we were all quite shocked to see tears accompanying his parting words. Our nurse later confirmed that she had never seen him show emotion and that Ren was indeed making quite an impact on everyone he came in contact with. With the waterworks out of the way, it was time to make our big move.

The transport team arrived and within minutes had Ren loaded into his protective enclosure. With heart rate, oxygen saturation, and breathing rate all coming in where they needed to be, we quickly made our way out the doors of the NICU that had been the only home Ren had known, down an elevator, through some halls, and out into the peeking sunshine where our chariot awaited us. The idea of sunshine on his face and fresh air in his lungs had suddenly gone from a parent’s simple wish for their child, to a full blown reality. I hopped in the passengers seat while medical personel loaded up with Ren and we were off. I couldn’t help but wonder if they were going to run sirens and cross town like a bullet, but quickly learned that not only would we be travelling sans sirens, we would also never exceed 20mph. The driver took great care to avoid all bumps and even opted for a route because it had the least number of turns. If ever you find yourself behind a painfully slow moving ambulance, just tell yourself it is because there is precious cargo inside and that there is someone involved that is inexplicably grateful for care being taken to provide a smooth ride.

Once at Children’s we unloaded and quickly made our way to our private room where multiple doctors, nurses, and specialists soon descended upon Ren. After 2 weeks of amazing supportive care at Seton, it was mere minutes until a plan of action was being discussed by his new team. Seton and their professionals did an impeccable job taking care of Ren and getting him to a point that he was stable and strong enough to make the move, but Children’s is where we knew the journey to get home would take place. Any surgery, intensive therapy, or development of a plan of care all happen at Children’s because it is home to the specialists and surgeons.

In our time at Children’s, we have been presented with a new idea of what one of the neonatologists believes this to be and have already drawn blood and sent it off to find out. The condition is called Myotonic Muscular Distrophy and is far less devestating than SMA. There are treatments and therapies available that would improve Ren’s quality of life significantly, and even has potential for normal life spans! We have quickly educated ourselves about MMD and I encourage you to give it a quick google as well. It has a 2 week turnaround for test results, so should come back exactly around the time of the Atypical SMA results. On a side note, a separate neurologist said to Devona today, “I don’t think this is SMA….this just isn’t an SMA baby.” We agree doc!

The great news doesn’t stop there. As I said before, I returned to work this week but Momma and Oma have been pulling double time the last few days and as always, Devona has been brilliant. On Wednesday morning she worked with a speech therapist and learned how to stimulate Ren by rubbing certain areas on his head, face, and neck in order to make him interested in suckling. Once this stimulation occurs, Ren’s feeding tube is started (which runs up his nose and directly to his belly) and Devona then offers him her pinky for suckling. The therapist asked that any time we do this exercise that we give him 15 minutes to suckle. This helps strengthen the muscles he needs to suck and swallow as well  teaches his brain to associate this activity with getting full. Ultimately, these are the challenges that must be overcome in order to avoid a permanant feeding tube. Devona made sure that she was right there, every 3 hours when it was time for Ren to eat and did this exercise. Let us not forget, she is also pumping every 3 hours to make sure that there is an abundance of milk to go in the tube. By the time the therapist made here way back around today to check on Ren and run him through his exercise, she was blown away by what she found. She said she had never seen such an improvement in sucking in just 24 hours. When Devona explained that they had worked on it every 3 hours (everytime Ren eats) the room was suddenly full of teary-eyed therapists, nurses, and Omas when the the therapist said, “I wasn’t expecting such dedication when I taught you how to do this.” Obviously she doesn’t know Devona very well.

I need to finish dinner and get up to Children’s for our evening visit, but will continue to update the goings-on frequently and regularly. The next 2 weeks promise to be full of opportunities for Ren to continue to amaze us, and I will make sure to share his triumphs with you all.