journey

At the Hemophilia Conference in June, I left feeling motivated and excited. It was so eye-opening and gave me great confidence in being Jack's caregiver. It also helped us make the decision to put Jack on once a week prophylaxis. You see, his hemophilia is moderate, right in the middle between severe and mild. Some kids with mild hemophilia will go years without having a bleed. Most kids with severe get their factor infusions 2-3 times a week to prevent bleeds. So, we are kind of in no man's land. Jack's level is very rare and sometimes hard to diagnose, and even more difficult to make a plan! We have chosen to see this as a gift from God - we know God has set apart our Jack for greatness. He is unique and wonderfully made!
As our son has only grown more and more active and involved in sports, he has had increasingly more bleeds. Just last week he had an elbow joint bleed, and he had no idea why....he didn't fall or bump it. On Wednesday afternoon it was sore and by Wednesday night it was swollen and he couldn't bend it. He needed factor soon!
More incidents like this have led us to prophylaxis. So, last month, our awesome home health nurse started training me to infuse factor into Jack's veins once a week. I learned how to mix the medicine. I learned how to put on a tourniquet, choose the vein, clean the infusion site, stick the vein, and administer the factor. I am still working on this but I am almost there....so many steps. I have to say that Jack has been so encouraging and the BEST PATIENT EVER! He is still, calm, patient, and tells me I am doing a great job. I am so blessed to be his mom.
As we continue this lifelong journey, our next step is for me to train Jack to self-infuse. He seems young I know, but this is the age that boys are encouraged to take control of their infusions. Step by step, we will train and encourage Jack to be independent.
There is joy in this journey.