Confirmed Rickets

On Wednesday, we had an appointment with a different endocrinologist named Dr. McClellan who works for PCH. He was friendlier and kinder when discussing Lucas’ possible medical condition. He ordered an xray of Lucas’ knees. On Thursday afternoon, we received the devastating news that Lucas has 100% confirmed rickets as seen on the xrays of his knees. Our immediate reaction was feeling overwhelmed by sadness and shedding many tears. We had held out hope that the 1st xray from weeks back was incorrect since Dr. McClellan reviewed that xray and questioned the radiologists findings since rickets normally is not confirmed from an xray of the chest. Now, we need to accept the findings that Lucas indeed has rickets.

On Monday, Lucas will have more blood and urine tests run to narrow down the type of rickets. Results will not be received for up to 2 weeks since these tests are extremely detailed. 99.9% of rickets are due to vitamin D deficiency. Lucas’ 1st set of blood work ruled out vitamin D deficient rickets. In total, there are 5 types of rickets. Dr. McClellan has seen 2 out of the 5 types. He is confident Lucas has a strain of rickets which he has never seen before. In fact, Dr. McClellan has never seen a vitamin D 125 blood result as crazy high as Lucas (the normal max is 75 & Lucas is in the 300+ range). Just great. Lucas again has an extremely rare condition. He truly is one of a kind. 🙂

At this time, the doctors believe Lucas has an extremely rare genetic mutation type of rickets. This means Lucas will have rickets for the rest of his life. We don’t know if his type can be maintained by medicine or shots. We don’t know if Lucas will be able to stand on his own, walk, or eventually have bone deformities. Sadly, we won’t have answers for at least 2 weeks until the test results come back. So we need to learn how to be patient and not go crazy from fear of what the future holds. The fear of the unknown is the most difficult to handle and is what makes me cry. We need to stay positive and have hope the Lord will grant us a blessing by having Lucas’ body show an improvement once a game plan is put in place.

Since that life changing call, we’ve received an abundance of support from our family and close friends. Lucas has been visited by all of his grandparents. On Friday afternoon, we were blessed to be invited to Pastor Brian Goodman’s (the pastor from Foothills Baptists church who performed our marriage ceremony) house to have a heartfelt discussion with he and his lovely wife Gail. In these moments of difficulty, we always feel the Lord’s love & strength. We will not crumble or give up hope. We have the Lord’s strength to fight this battle for Lucas!

How can this happy & handsome baby boy be sick?!?!

image

2 thoughts on “Confirmed Rickets

  1. Look at that smile! Hang in there you three — whatever the diagnosis turns out to be, there is clearly something special about Lucas and he seems to be full of positive surprises, too, that outweigh the scary ones.

    • Thanks Michael. Even when we get bad news, all we need to do is look at Lucas’ smile & suddenly the world is right again.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s