I'm so behind....again! I'll do my best to remember what I've missed.
I'll start with today.....Mason is having surgery this afternoon to remove more stones from his bladder and put in a more permanent access line. They had to remove the port and put in the femoral line. Today they'll put in a Hickman instead of another port and take out the femoral line. It will be easier for Mason since he won't have weekly pokes and it won't get as easily infected...we hope. Did I confuse you yet? :)
Mason continues to have random fevers....some high, some low. Cultures continue to be negative so far. He had his right sinus cultured because the CT scan showed something. So far nothing has grown. The CT of his belly really showed nothing, but the upper GI showed another larger diverticulum in his esophagus. It's a mystery why they are there...they weren't there last year.
We had a great 4th of July weekend. Saturday morning we walked in the 4th of July parade and handed out concert flyers and dum dums. It was a ton of fun and a great energy booster. Mason came home for a little bit during the day. We joined some friends for an evening BBQ and then we went to the hospital to watch the downtown fireworks with Mason and Damon from the hospital. It was an awesome day! The only thing missing was our handsome Brock. He went to the beach with a friend.
On another note, I just wanted to say thank you to all of the wonderful people who have come into our lives. Lately when I'm talking to people at the hospital I have slipped and called the hospital 'home'. But, I just wanted to say that the people here are amazing and really make us feel at 'home'. They love Mason and are so good to all of us. Thank you! And to all the people helping with the concert, helping us with the kids, and just being great friends....thank you too! We love you all and are so thankful we have been so exponentially blessed!!
I'll start with today.....Mason is having surgery this afternoon to remove more stones from his bladder and put in a more permanent access line. They had to remove the port and put in the femoral line. Today they'll put in a Hickman instead of another port and take out the femoral line. It will be easier for Mason since he won't have weekly pokes and it won't get as easily infected...we hope. Did I confuse you yet? :)
Mason continues to have random fevers....some high, some low. Cultures continue to be negative so far. He had his right sinus cultured because the CT scan showed something. So far nothing has grown. The CT of his belly really showed nothing, but the upper GI showed another larger diverticulum in his esophagus. It's a mystery why they are there...they weren't there last year.
We had a great 4th of July weekend. Saturday morning we walked in the 4th of July parade and handed out concert flyers and dum dums. It was a ton of fun and a great energy booster. Mason came home for a little bit during the day. We joined some friends for an evening BBQ and then we went to the hospital to watch the downtown fireworks with Mason and Damon from the hospital. It was an awesome day! The only thing missing was our handsome Brock. He went to the beach with a friend.
On another note, I just wanted to say thank you to all of the wonderful people who have come into our lives. Lately when I'm talking to people at the hospital I have slipped and called the hospital 'home'. But, I just wanted to say that the people here are amazing and really make us feel at 'home'. They love Mason and are so good to all of us. Thank you! And to all the people helping with the concert, helping us with the kids, and just being great friends....thank you too! We love you all and are so thankful we have been so exponentially blessed!!
2 comments:
Ahhh! Hi Mason! Thank you so much for responding to our post. We have posted a link on our blog to Mason's concert. We are beginning to round up a group of family and friends to come down from Washington. We will be following Mason's progress as well. Every step, so blog on Smedley's, blog on!
Hey Mason! I too have myositis called Giant Cell Myositis. I am a Harley rider and have been riding my Street Glide to raise money to find a cure for myositis. I wish I had known you last year because I could have put your photo on my bike as I rode to Canadian to raise awareness for myositis. I was able to meet two JDM patients on that ride. One of their photos was taped to my gas tank and the other I met in Seattle and she rode on the back of the Harley. Here is a link to that slideshow and a website to an organization I started called Riding 4 Those Who Can't. I will keep praying for ya, dude and I wish you the best!
Staying Strong,
Steve Morris
www.riding4thosewhocant.org
http://www.nowpublic.com/health/riding-myositis-those-who-cant-0
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