A Bish Tale: June 2014

Well other than a million and one different appointments, Brody is doing great. We stay very busy with his 4 different therapies. He still does not like going to therapy and typically will cry the whole time. I am in the process of switching his therapy over to "in home" therapy where a therapist will come work with him at home. I tried initially setting his therapy up this way, but had no success. My second attempt has worked out better and it's just a long process getting everything switched over and scheduled. My hope is that by switiching over to "in home" Brody might be a little more comfortable in a familiar setting and we might get a little more accomplished. Also, these therapist will be able to go to a baby sitters house, so I am also in the process of looking at going back to work. It's so bitter sweet to think about going back to work, but when you look at the big picture, I think it will be best for all of us. We are trying to get him more comfortable with being in different settings with different people to help with the adjustment of going to a baby sitter. I have noticed that he is getting better and better ad being able to adjust to different circumstances.

We had our cardio appointment this last week and overall things looked good. The cardiologist noticed some changes on his echo and said these were things we just needed to watch and keep in mind for the future. His tricuspid valve that has always been leaky and has not been fixed yet is now measuring "severely" leaky. His new aortic valve that was placed during his last surgery is dilated. This is pretty common and not unexpected and the cardiologist hopes to manage both of these issues with his medicine. We will continue to monitor him for signs that he is not tolerating his heart situations and hpoefully we can still go a very long time before needing to surgically repair anything. As she was telling me all this, my heart was sinking. I am not even a little bit ready to think about another surgery. My very conservative cardiologist did not seem overly worried by these changes and felt good enough to let us go 3 months until our next appointment. When she said that, I think I took a big breathe of relief.

We have a couple of appointments coming up that will hopefully give us good news. Brody will have blood work done to check his immune system and see if his T-Cell count has improved. Hopefully everything will come back showing imrpovements and we can maybe come off some of our meds. He will then meet with infectious disease that monitors his CMV virus. If his blood work shows his immune system has improved he will get to come off his CMV medicince. This would also mean one less monthly appointment and blood work. This medicine can have some negative side effects on blood count and the liver, so he is needing to be monitored for any symptoms. At some point, if I can ever get everything figured out and coordinated, Brody will meet with a nutritionist to evaluate his feeds. He has fought hard to work his way into the 26th percentile and he has been on the same feeding regimen for a very long time, so we want to go over things and see if and what kind of adjustments we might need to make.

This last weekend we celebrated Trey's first Father's Day. It was a nice day of just relaxing and spending time together. So often we are on the run and constantly going, going, going and it was nice for the three of us to get to sit around and be lazy. Trey does so much for Brody and I so we treated him with a gift of golfing fun.

By the time we are ready for another post Brody will be one! I am so excited for his birthday and party. There is so much to celebrate!