Chiane at Home

Good morning/good afternoon everyone.

How is Chiane?

She is doing very well. She is so happy to be home and to “forget” about the seriousness of what is going on….

We tried to prepare her mentally for the road ahead… But how do you do that if we don’t even know ourselves as parents. We explained to Chiane that the “hurt” was cut out but there is more and she will need medicine to get rid of it… We tried to explain it as simple as possible but she couldn’t come to terms with the fact that if the “hurt” is cut out and it doesn’t hurt anymore, why does she have to go back…

So! We took her to the garden and we used the weed in the garden as an example!!!! Hahahhahhaha don’t laugh!

We explained and showed her that if you break the leaves off at the ground level… The root is still there and although you can’t see the weed… It’s there and it will grow again…we explained that this is just what the doctors did! They removed the “hurt” but the root is still there…. We then took the root out of the ground and ask her if it can still grow and she said no… We explained that this will be the next “step” that the doctors will do and that is why we are going back to hospital… We explained that the root is there and we don’t know if they will operate and remove the root or if they will kill the root with “weed killer”… In her case special medicine.. she got the concept and now she is ready to go back… We still have to prepare her for another operation as we know they will insert a “Hickman line”…. We explained that the thing that she had in her hand was called a ‘cannula’…. That it was good to have it in her hand to draw blood and give her medicine but it is only good for 4 days before the veins start to give problems… We explained that she will get a ‘hickman line” which will be done under general anaesthetics and it will be connected to a main vein close to her heart. The reason for that is… She can get medicine then for months and she will have small pipes coming out of her body and she will have it for months..it’s better than her hand… It was a struggle to explain it but she got it… It’s important that she knows these things because we don’t want her to wake up from an operation or go in to theatre not prepared and then loosing her trust in us… We don’t want her to “guess” what is going on and become quiet in herself thinking we don’t care what is happening to her… The mote she knows the more she will trust us that we are helping her… It’s complex but we are getting there.

Other than that… She is doing very well herself. Her walking has improved and the steroids are helping… The only really big thing that is coming through more and more is “sharp pains” every other hour in her right arm and it’s so intense she breaks down in tears…

We have received a lot of medicine from the hospital when she came home. We control the pain as best as possible. The steroids… She is eating us out of the house! Hahahhahah

Today for example… She had breakfast at 8 am… 4 weetabix blocks… 10:00 she was hungry and we made her a big bowl of snacks! She gobbled it in minutes… 12 pm she cried she was hungry… 4 sandwiches later and she was quiet but not for long! 3 pm she was hungry and we made her another snack… And in between she had chips and cookies.. She is ready for dinner.. It’s 6:30 pm!

We are not complaining! We are happy for her…

Chiane and her brother are playing a lot and they have a lot of fun…

We want to thank Anna (one of Chiane’s teachers at school) for letting Chiane ride on one of her horses today. For those of you who might think it was dangerous, rest assure we will not do anything that can cause her harm… It was a very “friendly and calm” horse. Chiane loved it!!!! Thank you!

Pictures to follow a bit later…

Thank you all for your support and we are making the best of the borrowed time we have. We make sure she sleeps well… And rest… Estian us doing very well now that his sister is home!

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Posted on July 2, 2011, in News from Chris. Bookmark the permalink. Leave a comment.

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