Keeping On

We had another good clinic last Friday. Thatch gained some weight and his liver labs came back good. His Prograf (immune suppression medication) level was too high again so they reduced his dose through the weekend and we went back to get it checked Monday morning. It is very difficult to regulate this medicine's level in babies because they are constantly growing and changing the amount they eat, all of which affects how the medication metabolizes in the body. This is one of the reasons he his monitored so closely.

His labs from Monday morning were good and his Prograf level was back down to the appropriate range (between 6 and 8). We have labs and clinic again Friday. If his levels remain good, they will consider spacing out visits/labs...yay!

We have been so blessed with good news lately that I try to remind myself to stay grounded. I find myself walking the line between being positive and realisitic. I'm sure we will not escape all clinics with a good report but who knows. Whatever the outcome, the same truth has remained throughout this ordeal - the Lord is in control and has a plan for Thatcher and our family. He has blessed us tremendously and held our hand every step of the way, even when we have doubted. We have reason to hope in the future. Thank God.

We are still enjoying our time at home in between doctor appointments. As expected, we do struggle with what is acceptable and safe to do with Thatcher. His immune system is suppressed so this makes him more susceptible to getting sick and/or staying sick. It is certainly not as simple as this, but basically, it is our understanding that being around sickness/sick people is the worst thing for Thatch. We have incorporated hand washing and sanitizing into our daily routines, but we cannot live life in a bubble - nor do we want to.
We were assured that Thatcher will get sick, as all kids do, but this time right after transplant is most crucial. It's all a balance and gets better the further from transplant we are. We hope and plan to give Thatcher and our family the most normal life possible but we have to be patient through this first year at least. This may mean skipping out on certain events, family reunions, etc., but we've certainly invested alot in this liver and want to do what we can to protect it!