Oct 6, 2010
For ten years now we've been going to the local children's hospital for Pamidronate I.V. infusions for The Boy's bone disorder. When he was little The Boy referred to them as "confusions."
We began at two months of age every month for 3 days in a row. Then every two months for 3 days in a row. Then every 3 months for 3 days in a row. Now we are at every 4 months for 3 days in a row. In the beginning it took approximately 8 hours to run the fluid as The Boy was so tiny and the hourly amount had to be so small. Because of his kidneys and the nephrocalcinosis he had as an infant he also required a lot of extra fluid also slowing down the process. Now days we are able to finish is about 5 hours. Things are looking up.
The Boy was one of the first children in the USA to begin the treatments that originated at Montreal Shriner's about 11 years ago. We were very fortunate to have a nephrologist in our city who was up on the latest research all those years ago as there are still kids all over the USA struggling to find knowledgeable physicians to this day. It is the only treatment that has improved the quality of the very difficult life that children have with Osteogenesies Imperfecta have. It helps strengthen bone, reduce fractures and most importantly relieve the chronic, debilitating bone pain that accompanies this disorder. Terrible bone pain.
For years we were crammed into a tiny room with one or two other patients. Recently we have been blessed with a brand new outpatient infusion center which is state of the art. The Boy was busy playing PlayStation today while I was reading my favorite blogs on the hospital computer. Each bay has one complete with Internet.
I also finally got to see the new Alice In Wonderland movie. Yes, movies too! I'm not a huge Tim Burton fan but curiouser and curiouser I ended up loving the movie.
Being able to actually sit still for an extended period of time and tumble down the rabbit hole with Alice was sheer bliss.
Right now I'm off to flush The Boy's I.V. and then I'm in bed! No doubt I'll be dreaming about cakes and rabbits and hookah smoking caterpillars. And other such confusions.
Posted by SECRET PEPPER PERSON: at Wednesday, October 06, 2010