Update - Brainwave

Recap of last week (Summary from Rachel's blog) 

Last week they did a sedated echo along with many other tests & adjusted Ryker's pacemaker. Rachel spoke with Dr. Marx again and he apoligized for making them feel hopeless last week regarding the PVS. He said he just did not in anyway want to get their hopes up. He told Rachel that two of his own patients had PVS very similar to Ryker's and that they are no 2 & 3 years old and their PVS has not returned. Ryker has defined the odds over and over again thus far so we know he can fit into the 5-10% of babies that PVS does not come back. Please pray that Ryker is going to be in that small percentile and his PVS does not come back. 

As of now (Monday May 14th) they have not decided weather or not they are going to operate. Rachel spoke with Ryker's cardiology team this morning & discussed a few things along with the feeding issue (they have not fed him since last Thursday because it was continuing to cause him so much pain to do so) They have just had him on IV nutrition for 5 days now & he is gaining about 12 grams a day on that so they are going to up it in hopes that he will gain between 20-25 grams per day. Right now Ryker weighs 7lbs 2oz at 2 months old. He needs some meat on his skinny bones! But they are not planning on starting his feeds again until they know weather or not they will operate this week. Their plan is to discuss Ryker at the Cardiology Conference tomorrow morning, which is the entire board of Cardiologists, so that Ryker has as many brains on his situation as possible to make sure that the perfect decision is made just for him. Rachel says, "I am so grateful that we are in a hospital that they will make sure that every single base is covered to make sure my baby boy gets the absolute best care possible! Thank you God for leading us here!!!"

Please continue sending your love and support to Ryker, Jason, Rachel, Trett, Jadd, Braylee & Addi. They all still need to feel the "love" very much so. "No one ever said it was going to be easy, they just promised it would be worth it" comes to mind very often lately. 

Thank you so much for all your love support and prayers. If you have not yet please put July 28th on your calendars to come walk/run with us in the Brainwave event. Flier below.