Sunday, November 15, 2009

Another treatment

Hello Em,
You came out of hospital today after being in 3 days for your Pamidronate treatment.  Mom and Dad took you in on Friday morning and Dr Roos put the port into a vein in your head straight away this time.
Last time you went in for treatment, they did the infusion for 6 hours every three days.  This was going to be done every three months.  But, your Dad is really on the ball!  He got hold of the Protocol from Shriners Hospital in Montreal where a Dr. Glorieux pioneered the use of bisphosphonates to treat children with biophosphonates.  The protocol is to give small children (like you) smaller doses more frequently so Mark gave this to Dr Roos and now you will go in every two months and have the treatment for three hours not six hours every three days.  You screamed the place down when he put the port in - which is exactly what I would do if someone tried to push a tube into a vein in my head.  But, once the port was safely in you settled down and when we got there to visit you were your happy little self again. 
In the early hours of Saturday morning Tammy found that you'd pulled the canula out and there was blood everywhere so you had to be bathed at 4 in the morning!  And, Dr Roos had to put another port in.   I think Mark and Tam know more about your treatment than any of the doctors or nurses.  The Arieda (Pamidronate) comes in 15ml bottles.  You only have 5ml at a time and Mark heard the sister telling the nurse to throw the left over away.  Mark told her not to as it can be kept in the fridge for 24 hours.  She argued with Markm then phoned Dr Roos who confirmed what Mark said and told her to put it in the fridge.  At over R800 a bottle its sacrilige to chuck out 1/3 of the bottle.
You are such a sweetie Em.  You have started copying everything we do and say.  Tammy asks you, "How much does Mommy love you?" and you throw your arms out wide.  "How much does Daddy love you?" and you throw your arms up above your head.  You can clap hands, point at anything, do the touching fingers sign for 'more', say 'nana' for banana, 'buh' for buttons 'dada' 'mama' 'yum' huyo' for hello and many other sound-words.
You had your last treatment this morning and after having your femur x-rayed (you have an appointment with the orthopeadic specialist this week) you finally got home after lunch.  Finn and I went to visit you and you were happily playing on the crapet with Mark.  You giggled and laughed out loud, and tried to crawl on your knees which freaks us all out!