Big guyâs pediatrician called on Tuesday and said he did test positive for a connective tissue disorder. Thankfully, we are about an hourâs drive from a really good Childrenâs Hospital at an amazing teaching hospital. The downside to that is, there is no appointment available until June 21. He is set to go to camp on June 22, so it lines up perfectly. We are to expect to be there 2-3 hours, or longer if there is any testing done that day.
He is taking it as a teenager does, with few words. There was a time in his life that I hoped and prayed for an age-appropriate reaction, and we have finally reached that milestone! â¤ď¸ The pediatrician said he CAN still run, but he CANNOT participate in contact sports until we get a diagnosis. Iâm afraid his contact sports days may be over, or perhaps limited. He is talking to us about running, or not. His lower back hurts on a daily basis. He doesnât want to injure himself further. He wants to be in good shape to participate in more sports as he gets older. Iâm proud of him for his line of thinking and the maturity with which he is approaching this.
He knows he could have rheumatoid arthritis, lupus, or a related disorder. He knows he canât participate in contact sports. He knows it could be âa genetic disorder,â but we havenât called it Marfan, and we havenât told him his aorta could stretch or dissect. đł That is a burden I will gladly carry for him until we find out if that is a proper diagnosis. My husband and I both want to spare the kid all of that worry and fear if itâs not going to be his reality. He is handling it well, and we are doing our best to keep it that way.
I am trying not to worry too much, and trying to let God carry the burden for me… But I am concerned, with so many Marfan traits I have noticed. It turned out that his brother did not have cystic fibrosis, âjustâ an unexplained prolapse, so maybe all of the symptoms we are seeing with big brother will turn out to just be a coincidence. We will just hang and try to stay calm until June.