Tick - we made it through another week of Dex! Unfortunately the steroid Dex did not stimulate Paige's appetite and she actually ate less than normal. Additionally she clearly experienced jaw pain from the chemo vincristine that she had on Monday because she was tearing through quite a few lollies and complaining that her mouth was hurting. By the end of the week she was particularly grumpy and insomnia set in. On Thursday she woke up at midnight asking for milk and bread. She then wanted to read a story and play in her room, this continued until three am....yawn. On Friday night she woke up again at 12.30 and didn't go back to sleep till nearly 4.00am. Fortunately she slept through on Sat but then the same issue on Sunday and Monday night. Dr Millard has advised that Dex can make her hyper so that we should give her the evening dose by 4.00pm and maybe she'll be less hyper at night.
Despite all of this, she did manage to get into trouble early in the week with my lipstick!
We enjoyed afternoon tea on Saturday, again at Standstead house, a special treat since Aunty Kathy, Paige's god mother and Russell's cousin came to visit for the weekend from London. The kids loved having Kathy here and it was great to have an extra pair of hands after Thursday and Friday night.
Here she is on the 'big slide' for the first time I think! She loved it, 'mummy that was fun! can we do it again?'
Bloods done yesterday were without incident and her neutrophils are holding steady at 2.1. So we headed off to ballet where she actually followed the teacher's instruction for the first time. My eyes welled up when it was her turn and she walked across the floor on her tip toes :-).
This was taken before class she wasn't too impressed with me because she was trying to watch TV.
In the end she smiled though
Finally her weight has dropped to 11.1kgs this morning so that we will monitor her over the next week and if there is no improvement in her weight the feeding tube may have to be inserted again:-(. She's been so happy without it and smiles so much more.
Again, we take life one day at a time and enjoy the good moments........