Catching Up

My kiddos are home this week. Both have really had a great summer so far at their perspective camps/conferences.

Caitlin loved Oakcrest. She had a great counselor named Cooper and loved the activities. They had some wonderful spiritual experiences and tons of fun. I let Caitlin take my camera and she came home with a whole memory card full of funny self portraits. I think next year we’ll offer some photo taking advice before she goes. The other funny thing is we obviously sent her with too much money to buy treats. Her bags were stuffed with empty candy wrappers and a plastic fork. After throwing away all the garbage, she informed me that the plastic fork was from an object lesson. Sigh.

Caleb spent last week at USU and had such a fun time. He’s got a great group of friends in student government and from what I understand, they know how to have fun and stay up really late. I love these photos of him on the obstacle course.

Last week was my birthday and we went to dinner at PF Chang. My lovely family gave me a one year spa membership. I am so excited to have something just for me to look forward to each month.

Friday was Caitlin’s yearly MRI that was overdue by about six months. She was prescribed Ativan to help her through it and it did help take the fight out of her, but not the fear. She was upset at the hospital, but having a great tech made all the difference. She allowed me to go in the scanning room and hold Caitlin’s hand the whole time. Before we entered the room, Caitlin told the tech that she liked to be talked to during the scan and it kind of broke my heart. I don’t know that she will ever get over the time a dumb tech didn’t say a word to her and she thought she had been forgotten. No MRI has gone smoothly since then.

Today we went to clinic for a full check-up and the MRI results. It didn’t really go as planned and we left without a clear answer regarding the scans. The Neuro Team will be taking a look at her scans going back five years to compare and re-measure to get the final word. We hope to know more tomorrow. Her doctors are also concerned that she has completely fallen off the growth chart for height and weight. Average weight for a girl her age is 107 pounds. Her target weight is 97.3 and she is currently at 78.48. I’m not really sure how to feel about it right now. I’m not in a panic, or fearful, or upset. More than anything I’m just disappointed that this disease causes so many late effects and trouble. Caitlin has come through so much better than many kids we have known over the years, but she’s still affected in ways we are discovering 10 1/2 years after diagnosis. 

On a much better note, today Caleb shared the nicest string of emails from a young man in England who he met at the World Jamboree last year. The meat of it is that the boy mentioned he still had the Book of Mormon Caleb gave him, and Caleb encouraged him to attend church services at the local LDS church. While he didn’t go to church, he dropped in on the Young Men’s weekly activity and said it was fun and they “served great biscuits.”

There’s plenty of other crazy stuff going on in our lives that we lovingly refer to as our balls of fire, but until we get answers, I’m not mentioning them here. Don’t want to jinx anything. Fingers crossed…