Friday, January 15, 2010

St. Louis here we come!

Sorry I have not been updating my 365 Project these last couple days. Our family is adjusting to lots of new news. But I am taking the pictures each day and will post soon! 

As for St. Louis...last month right after his first birthday Dillion was diagnosed failure to thrive. He was under the 5th% for height and weight. Regular blood work was run to see if he was malnourished, however all of his electrolytes came back fine. I asked for additional blood work to check for rickets as my mother and I both have it. Many of his levels came back low. After which x-rays were ordered that showed he does have sign of rickets in his bones. 

What is rickets? Many people know it as a "old" disease when children did not get enough calcium and their bones (mainly the legs) began to bow in. However the kind my mother and I have is hereditary. It is passed along the X chromosome. Meaning any of my sons have a 50/50 chance of getting this disease. It is sometimes called Vitamin D resistant rickets because our bodies do not process vit D correctly and instead just expel it. Vitamin D is essential in the absorption of calcium which we all know is what makes our bones grow big and strong. As a result people with rickets do not reach their full height potential. All of my family is 5'10'' and up. My mother is 4'11'' and due to advances in medicine I was able to grow to a whopping 5'3''! 

What does this mean for Baby Dills? Currently we are unsure. His pediatrician believes Dillion's rickets is the old school kind and that my milk was insufficient. This would mean he needs to be on high doses of calcium and vitamin D until his body responds and repairs itself. No long term harm.  I have been in contact with my former hospital, Shriners in St. Louis. They have told me that with the rarity of rickets it would be highly unlikely for my sons case not to be hereditary. Though we are still holding out hope. If it is the kind my mother and I have it will be a life long issue. He will take medicine throughout his childhood. Most likely have braces on his legs and in many cases (mine and my mothers) he will need surgeries on his legs to help them grow straight. 

We are going to St. Louis the first week of February for a week long evaluation at Shriners. They will put him on a special diet to measure his calcium/vit D intake, draw blood and collect urine to see how his body is processing it. After which we will know what kind of rickets he has and how to treat it. 

The reason I wrote all this was A. to get it off my chest. I can only talk to my husband so much before he both cry :( but mainly B. to say thank you to some amazing people. I have been in contact with the Bloomington Stonebelt Shrine Club. They are a group of masons who sponsor children to go to Shriners hospital. Although the hospital itself is totally free the expenses of going there are not. We will be driving about 250 miles, James will be staying at a hotel for 4 nights, and we will have to eat approx 15 meals a piece at the hospital. This really adds up and the Shrine club is willing to pay all of those expenses (within reason of course. We won't be putting James up at the Hilton!) So thank you to Dave and the Stonebelt Shrine Club. 

Please keep us in your thoughts as we embark on this journey. 


  1. omgosh. i'm so very sorry. this is so sad. I'm so glad that you have the shriner's help on this journey. I wish you strength for your family and for Dillion

  2. Travel safe! Keeping you and your family in my thoughts and prayers.