June 15, 2015

Today has been a good day. Tyson still needs to be suctioned a few times through out the day but for the most part he is swallowing his secretions and coughing once in a while. He is very much like a 20 lb newborn right now. He wakes up a few times through out the day for short periods. He is limp with very little muscle control. He doesn't really focus his eyes and can more his arms and legs like a newborn. The speech therapist was supposed to come today but they were overbooked and they didn't end up coming. So hopefully they will come tomorrow and be able to evaluate him tell us that we need more testing. The therapists will evaluate if he can swallow on his own for eating and how is esophagus is working.

Right now I am leaning towards getting the g tube placed because I think he would be too tired at this point to eat enough all day every day. And I would rather be an expert at swallowing and breathing before we try eating. But we will see what the doctors say. If they do the surgery they will also do an additional procedure where they wrap a bit of his stomach around the opening of the esophagus to the stomach. And it will help with reflex so that he doesn't aspirate. But he would be able to eat eventually even with that procedure.

We had the occupational and rehab therapists come to visit us today as well. They worked with Tyson and also told us that there is a great rehab therapy program in Rexburg that we could potentially be using in the future that they highly recommended. There is also an option to have a musical therapist come in to work with Tyson so we are thinking of doing that as well.

We also went on an adventure to get an ultrasound of his brain. Since we are no longer in the PICU we had to go to the imaging center instead of the ultrasound tech coming to us. So far we haven't heard any results so to us that is good because if there was something urgent then we would have heard from the neurosurgeon by now. But they will let us know more tomorrow hopefully.

We have had so many people praying for us, it is amazing to hear the stories on a daily basis! Today Grandma Donna told me a cute story about Cam's cousin's daughter who goes to Catholic school. She is in Kindergarten and today when she went to class she told them about Tyson so they prayed for him in the classroom and then they prayed for him again with the whole school during mass. It warms my heart especially when I hear stories of little children praying for my sweet boy! I know that their faith is so strong and that they are connected to God on a deep level because of that undeniable faith and belief that they hold in their hearts.

But that has been our day pretty much. Cameron is going back to Rexburg tomorrow to do this weeks worth of classes. We are happy with our babies progress and we are hopeful for his future.

Father and Son 

On our way to get the Ultrasound

He loved going on an adventure