We made our annual visit to Cincinnati this week. Hard to believe we have been making the trip  for almost 13 years.  Each time we visit we are flooded with emotions. We are so thankful for the wonderful care we have received at Cincinnati Children's Hospital.

We began our visit with an almost two hour appointment with the genetics team. We are so thankful to have wonderful new geneticist on board who is very knowledgeable  of Andrew's medical condition and can relate to him on a personal level. They had some great conversations about cattle genetics and human genetics. She was very pleased with Andrew's progress after transplant. We discussed some things to watch for including pulmonology function and narrowing of the cervical spine.  We will schedule a sleep study when we return to Cincinnati for our next visit. We had an x-ray of the spine after our visit with genetics and they called to confirm that Andrew's cervical spine looked good.  This helps puts our minds at ease as we prepare for Andrew's upcoming spinal fusion on Tuesday the 7th.

Andrew underwent several tests for his heart function. When we met with the cardiologist he said his heart was good and strong. This is most wonderful news given Andrew was on heart medication shortly after transplant.  Andrew was not to happy with the exercise test, but the heart doctor assured him he wouldn't have to endure the tests every year. The doctors wanted a baseline to monitor how his pectus (the inward curvature of his chest) impacts his heart and lung function. 

The endocrinologist is please with Andrew's continued growth. Andrew's hormone levels are monitored closely each year due to the potential damage caused by the chemotherapy drugs administered in preparation for the bone marrow transplant. The doctor said that time is now on our side because if he was going to have any issues with hormones it should have happened by now. Andrew's growth has been hindered a little bit by his spine and hip surgeries, but his growth has continued to progress each year.

Our last visit was with the most wonderful Dr. Davies. She was very pleased with how Andrew was doing post transplant. We have reached the point in a our bone marrow transplant journey where our visits with Dr. Davies involve more talk about how Andrew is doing in his personal life, not his medical journey. Dr. Davies still visits with all of his other doctors to ensure we are on the right track.  

The bone marrow transplant was the critical piece to Andrew's journey and we are so thankful his body is producing the enzyme. Unfortunately, the transplant can't fix all of the issues related to Andrew's medical condition especially those related to orthopedics. 

Andrew will undergo another spinal fusion on December 7th to correct the kyphosis (curvature of the spine that results in a hunchback look) that has occurred above his previously corrected kyphosis. This surgery will be done in Columbia with Dr. Dan who has performed many orthopedic surgeries on Andrew over the past 13 years. 

We appreciate all of your thoughts and prayers over the past 13 years. We share Andrew's journey because we know so many have been praying. We have talked with Andrew about how much information we should share and he feels that it is a part of who he is and he is happy to share his story.

Thank you for your thoughts and prayers. We appreciate all of the love and support for our family and friends. 

In God's Hands,

The Schads and Monkey George too (who still travels to Cincinnati with us each year)