Saturday, August 29, 2009

First Pamidronate Treatment

Hello little Em,
Last weekend was a milestone for you, and for your family. Your cast came off on Friday and on Saturday you went into Parklands Hospital to start the first of your years of Pamidronate therapy.
What this means is that the doctor inserted a feed line (small plastic tube) into a vein in your foot so that they could put in a drip to administer the Pamidronate over a period of 6 hours. Pamidronate is a biophosphonate - like the one I take for osteoprosis - that should strengthen your bones and help them not to break.
It was quite truamatic because they couldn't find a vein large enough in your right foot so they had to try again in the left foot. Tammy said that Dr Roos was sweating after doing this procedure - especially with the right foot as that is the leg which has just come out of plaster.  Tammy stayed in the hospital with you and we visited you each day. On Monday they had to remove the feed from your foot because they couldn't flush it (they clean it out with salt water - which stings and made you cry) so they put a new feed into your skull. My heart jumped when I saw you with the drip in your head. But, Tammy said it wasn's as painful or traumatic as having it in your foot. So, my darling girl, you have now had your first three days of Pamidronate treatment. You will have this every three months for about 5 or 6 years.
It was a very upsetting and trying time for your Mom and Dad - especially your Dad who says that he almost feels your pain - but in a perverse sense, I wish it had been available when your Dad was little. Had he been put on a treatment like this he might not have had over 120 fractures, deformities, surgeries, shortened growth and everything else that went with his condition.
I babysat you a little while today and we sat on the lawn watching the cars go by on the road. You love being outside and I hope that soon you'll be able to crawl and investigate your world.
Today - Sunday - we had a family dinner at Patty's and after lunch we sat with you on her front lawn. I intoduced you to Pansies and you seemed charmed by these beautiful little flowers - so much so that you tried to eat them all!
I hope this treatment helps prevent fractures Em. I can't bear to think of you having another break and that is why I am so reluctant to put you on the ground and let you try to crawl or move about yet. You are getting frustrated and we are being over careful but its like walking a tightrope - on the one hand you don't want to be over protective but at the same time, you have only been out of a cast for a week and we need to protect your leg until it is quite strong again.
I hope that you will soon be able to crawl about on a lawn, pick flowers and do all the things other babies like to do.
I love you Em

Thursday, August 6, 2009

The Cast came off today

Hello little Em,
This morning your Mom and Dad put you into a large oval tub of water to soak off your cast. They thought it would take ages but they soon managed to unroll layers of the POP bandage. You loved it! You hit the water which splashed all over the lounge, onto the sideboard and even onto the sliding doors! Then they bundled your leg into a towel and took you to the Westville hospital to have the remainder taken off. Dr Fraser applied a fibreglass gutter splint from the knee down so that you are now able to bend your leg - and, Mom will be able to take it off and bath you. The splint stays on for 2 more weeks.
Everyone is so relieved to have the long leg cast off but now they will worry about how much freedom to give you. Should they allow you to crawl? Should they let you try to stand, pull yourself up against things? Its really scary because nobody wants to restrict your natural mobility but they also want to protect you from any further fractures.
In a two weeks time you will have the leg x-rayed and will be allowed to remove the splint. I wonder if you shouldn't have a splint made for the other leg as well so that when you try to crawl you have some protection for the bones? Mark had special plastic splints with hinges at the knees. The only problem was that he grew quickly and outgrew the splints within a few months.
It is my birthday today Em. I am 62 years old. I put a post on my Facebook that if you get married at the same age your mother got married, I'll be 90 years old at your wedding! I said that I'll wear purple! I don't like purple but if I'm around for your wedding, I'll wear purple!!
You were an angel today Em. Your Dad went back to work at lunch time and Mom went to do some shopping. You went to sleep in your pram at 1:30pm and slept for 2 hours. Even awake you don't cry, you don't niggle you are a sweet, smiley, happy baby and I love you to bits.