Second PAM Treatment

Well at least this time we know what to expect I guess. The last treatment was very hard on all of us especially Emily, she had no idea what was going on and she refused to sleep.

This time I think we are much more relaxed, we know what we need to pack - last time we kind of just took everything we could possibly think of and hoped for the best. I have learned little things, like pack one bag of me and Emily, there is no way I am going to make it home to shower and change like I expected to the last time.

I know that the nurses know nothing about OI or how to handle a child with OI. I know that they can not under any circumstances us a blood pressure cuff on her, and I know that I can not allow anyone to bully me. I am there to protect Emily and make sure she gets the best treatment available.

I have made an information insert to put in Emily's file so every nurse that deals with Emily has a cue of what they can and can't do. I start sounding like a stuck record every 2 hrs having to explain to a new face what they can and can't do. Here is Emily's letter to the nursing staff. My mother in-law used to do this for Mark when he had to go into hospital, guess she got tired of educating everyone as well.

Hello

My name is Emily Ann Nilsen and I will be 13 months old on the 16^th of November. I have Osteogenesis Imperfect or Brittle Bone Disease. This means my bones break VERY easily.

I am here getting treatment that will make my bones stronger so I can grow up to be big and strong!!

I have had two broken legs in the last 5 months!! Please be careful with me and I don’t want to be in a cast for Christmas.

Here are some things you can do to help me to not break any more bones while I am

Please don’t use a BP cuff on my arm as the pressure could break my humorous.

Please don’t pull on my arms or legs.

Please don’t twist me in any way especially my arms or legs.

Please don’t make me do any sudden movements.

Please don’t pick me up

Please ask my mom (Tammy), dad (Mark) or granny (Sylvia) to help with anything you may need.

Please wash your hands lots, I cannot have physio if I get sick as it will break my ribs.

Thank you for helping me to get stronger

Emily