Monday 4 November 2013

November 4

We are coming to the end of Evelyn's second steroid dose this weekend and things have gone a little better this time around. We are learning how to deal with her moods and what her particulars are and can usually prevent a meltdown before it happens. Charlotte use to get really upset when Evelyn's bad moods would swing her way but now has learned to not take it personally :). She has been a good big sister to Evelyn; always trying to make her feel better when she is on her 'cranky medicine'. 


Evelyn is on an anti-inflammatory for her bone pain but the last couple days (Sunday and Monday) of her dose she is still in a lot of pain so we top her up with morphine and that seems to ease it. She likes to be cuddled and carried, especially up stairs and when walking long distances. She will lay down anywhere as long as she has her lion, bottle and blanket -



We do a lot of this on the weekends she is on steroids -

  


Her appetite is still minimal (and picky) and sleeping is off routine but much better then last time. Evelyn and her beloved -


For the months of November and December our clinic visits are down to once a week, usually Thursdays. Her NG tube came out again last week - she was climbing up a chair, fell down, the tube got caught and out it came. There are those odd days we have to make an extra trip. Sometimes clinic mornings can be long so the afternoons usually look like this -



Last Thursday (Oct 31) we had to go in for a regular chemo treatment and since it was Halloween the hospital had a parade for all the patients. We arrived at the hospital early morning, the girls all decked out in their costumes. 



Evelyn received her chemo then off to the parade we went. We did not expect it to be so big - hundreds of employees lined the halls (on levels 2 and 3), passing out handfuls of candy to the kids. My girls came out with 3 big bags of candy. It was a little overwhelming but the girls loved it and even got their picture in the Hamilton Spec :). 









MacMaster Hospital has truly been a blessing throughout all this - all the nurses and staff do all they can to make this journey fun for the kids and not so taxing on the parents. There will be times where Evelyn will be too sick or we as parents are busy caring for her that we miss out on fun opportunities but the staff make sure the patients don't miss out on holidays and fun stuff - my girls get spoiled every time we go :). It makes our hearts a little less burdened and a little more happy :). I will end this post with a few more pictures of our good weeks :). 
I turned the camera around on my phone so Evelyn can see herself - she loves it and usually gives me a goofy expression - 





Charlotte cooperates :)


Everyday happenings that make up for the weekend of steroids -











 Evelyn does a lot of this - 


Charlotte does a lot of this - 


Lindsey and Stephen 

Isaiah 40:31 "But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."









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