This past Friday, Craig II got his license!! Yes, the little boy who drove his big wheel up and down the sidewalk is now behind the wheel of a car! We are so proud of him, and can't believe this moment is upon us!
Wednesday was yet another visit to Phoenix Children's Hospital for Blake. I am continually amazed by the magnitude of this facility, and yet the personal attention that is given to Blake is the best!We haven't been to see Dr.McOmber since October (planned that way), so we weren't really sure what to expect. We reviewed all his lab work that was done from the last two weeks and he was pleased to see, that little by little, Blake's liver function is slowly improving. It will be 2 years in March since this diagnosis rocked our family's world, yet it has been two years of watching great things happen for Blake.
Dr. McOmber was concerned that the tremors in Blake's hands (one of the side effect of this disease) are not improving, rather they have become much more noticeable, and are now dual function (both hands). Dr. McOmber will be meeting with a hepatologist (study of the liver and other internal organs and management of its disorders) and neurologist (Wilson's Disease can affect the cerebellum function of the brain) to discuss Blake's current situation and the steps that we will need to take for further treatment.
Every time we meet with Dr.McOmber we are so blessed with the knowledge he has, and the care that he gives Blake. He told us that Blake is one of 4 patients at PCH with Wilson's Disease. There are no more than 10 total in the entire state! Makes him an extra special kid. He shared with us that he would be telling a teenage girl and her family this week that after all of her tests and biopsies that she too has Wilson's Disease. I started to cry as he shared this, thinking back to the very first time we heard that news. You walk into an appointment not knowing what to think, and leave with a whirlwind of thoughts and fears. This disease is so rare, and yet when you hear of another person being diagnosed, you realize you are not alone. We may be given the opportunity to meet this family, as Dr. McOmber will be telling them that they can contact us if needed. I want this mom to know she is not alone; there is support out there and families who can help her begin this process of change for her daughter. We pray that we will get the chance to meet this family and help each other.
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful; I know that full well." Psalm 139:13-14
(picture of Blake as Zeus in his school play, and Dylan his youth leader at church)
This time of year, life seems to go so fast. Every weekend, and many nights are occupied; there is so much to do- shopping, cooking, planning, attending events etc. The Herrman family is taking a different approach this year. Basic and simple. Decorations, schedule, gifts; all of it. And I am excited for all of the changes. (picture of last years tree)
Today we met with Dr. McOmber at Phoenix Childrens Hospital and got a little bit of good news. There are some new studies being done for Blake that show that we may be able to lower the amount of medication he is taking daily! This brought a huge smile to his face. After a year of taking 6 pills a day, as an 11 year old, this is a huge step forward. After his examination, Dr. McOmber also told us that he felt that Blakes liver is not as swollen as previous visits have shown!
We are so blessed to have so many people praying for our son, and to say thank you is a small place to start.
We have been given the clear for 4 months and don't have to go back until February 2011! We will miss seeing the GI team each month, but are so thankful for this new part of the journey.
