[ceebee]

Hi,

Not sure how to go about this any more - never received any responses to my last post. I have spent the whole day in Alder Hey today with my daughter and I dont know who feels more tired. Kirsty has had urine tests, extensive blood tests, chest x-ray and ECG. I want to cuddle her but she just turns away and because I am tired I get ratty.

She is not eating and has when she does she vomits - she is breaking my heart .......help me someone to help her...............I am really upset and her results will not come back for weeks- can another parent please give me some strength?

Carolyn

 

[ceebee]

Thanks

Thanks for the replies.

My daughter is 16 in just over a week. She is doing really well keeping up with her schoolwork but it's really hard for her at times. The school is not very supportive and more interested in their attendance figures which makes me mad at times and adds to my frustration.

Clare - you are completely right about the hospital days and probably why I felt so low yesterday. We were at the hospital from 10 am to 4:30 pm and we were both so exhausted. We were planning to go to the cinema afterwards but we were both so tired we came home and went to bed instead. Also, last week was particularly hard as she was having a bad week and apart from the vomiting was in pain and finding it difficult to walk. There were no smiles and just a dark cloud over the house. I try to keep her spirits up but I am only human and occasionally do get frustrated and annoyed which does not help.

I love my daughter very much and just want it all to go away. I feel very useless at times when she complains of being unwell as there is nothing I can do to make it better. A mum is supposed to make things better and have answers for everything. The only result we got yesterday was that her eye defect is definitely nothing to do with the eye itself and has definitely been damaged due to some other problem that has occurred. There is no guarantee that this "something" could happen again and affect another part of her brain.

Her grandmother is very supportive but sometimes I think my partner thinks she puts it on which makes me angry. He does not seem to understand how she can be perfectly healthy and full of beans one week and then floored the next.

I suppose my worst fear is that they find nothing and then we are back to square one with no answers. Part of me wants there to be nothing wrong of course but it will not help my daughter and will not explain why she is feeling the way she does.

I am finding it hard to concentrate on work at times and I do have a sick feeling in my stomach which probably is a little bit of stress. I wont let it get too bad before seeing my GP and will definitely take her to the GP regarding her vomiting.

Again - thanks for the support and will keep you posted on the results of her battery of tests done yesterday - hopefully it wont be too long before we get some news.

Carolyn xxxx