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The waiting game

isabella still isn’t great I had to go and collect her from school yesterday as she was having so many seizures that it wasn’t safe for her to travel onschooltra sport.i have to admit that it’s breaking my heart seeing my beautiful girl like this. She is still sleeping most of the day and night and a lot of the time when she is awake she is having absence seizures so is unaware I am here. Every so often. My little fighter breaks through and I get the most beautiful smile and cuddle it’s these precious moments that are Keeping me going. I think this is part of the reason why I am doing the nuclear run. Obviously we need the money to be able to provide for Isabella and the equipment support and therapy she will need I the future. At the. Minute I feel useless that I can’t make my child better and I guess this is the only way I can feel slightly less of a failure. I have spent the evening going through some old photographs from last year and listening to videos of her giggling. I sometimes wish I could be as brave as Isabella.

The picture on the left is Isabella holding my hand whilst we wait to go down to be sedated for her MRI and on the left she is looking unhappy and struggling to stay awake during her eeg.

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I am feeling slightly relieved that the MRI and EEG has been done we just need to wait for the results to come through now in the hope that this will give the doctors some answers. I know our consultant who is a wonderful man is feeling equally frustrated that everything he is trying isn’t working and he is linking in with greater ormond street hospital although they are all waiting for the results of the MRI now before they decide what to try next. Isabella is due to have her bloods taken again this week and depending on the results she may be able to have an increase in her medication whilst we wait for another strategy to be decided.

 

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