Friday, January 17, 2014

Ups and Downs

This week has been one of ups and downs, more ups. Monday started off with a visit to the orthopedic, Brian and I knew this was going to be a hard appointment. Ian's scoliosis has increased from 58 degrees to 64.5 degrees. He is officially a candidate for spinal growth rod surgery. We discussed all our options with the M.D., and decided our plan at this point would be to start wearing a back brace again. We decided we would go with a soft TSLO, Ian has always had a hard one and has been extremely uncomfortable in them. We are hoping he will be more comfortable in the soft one. Brian took Ian to get casted today for the brace.... Ian being cast and the design of choice for his brace.

Tuesday was back to school. Ian did great. Wednesday was school for Ian, I joined him as well since we had a new nurse start. Brian and Becca went to Philadelphia for the 5th grade field trip. They had a great time. Thursday was another M.D. appointment, pulmonary. It was good, Ian is stable on all of his vent settings. We continued our surgery discussion with him, as Ian getting the spinal surgery is a risk for him, much more then the normal person. At this point, Ian has told us he does not want the surgery. We told him we are just gathering all of our fact and he will help us make the decision when we get there. This is a very difficult decision for us, looking at the X-ray on Monday you could see his lung begin smushed. That along with the pictures above just breaks our hearts. It is all part of the horrible disease. Thursday night, Ian decided to have some fun with oxygen, just for a boost. Friday, was school and getting casted for the brace. This afternoon Ian decided that he wanted to have more fun, a plug which did not want to come out so easily. Tonight we are all comfortable with sats in the upper 90's getting ready to watch Cloud 9 as a family. 

The ups and downs of a neuromuscular disease.

1 comment:

Anonymous said...

Rachel Heath Wallace Sending love and prayers. Xoxo

Kendra Bober (((Hugs))) to you all...what an eventful week...may you have a few quiet weeks coming to you!

Sandra Huller <3 you!

Jennifer Larsen Orlando Thinking of you 💜

Melissa Werner You all are very brave and strong. Thank you for sharing your experiences as they reinforce for us all how strong you all are.

Tamara Jayne Flax Life is full of ups and downs. Stay strong!

Chantal Levy Reznik Thinking of u

Michelle Kampler Schwartz oops - I liked before I read. thought I was liking your other post..

Lisa McCarville D'Antonio Hugs & prayers to you & yours lil ...