TooFatKats diary of desperation ..(and hope)

No not yet. Still a mystery. Hopefully the nerve conductive tests will show something.

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I can't believe it's Thursday already! The last 10 days have just blurred together. Em is no better and as of yesterday now has no feeling in her leg from the knee down :( anyway, enough of my whinging at the minute. Food not too bad, I'm working all weekend so not sure what evening meals will be like. Ive got my breakfasts and lunches planned. I won't be able to do my official weigh in til Monday morning instead of Sunday .

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toofatkat said:
I can't believe it's Thursday already! The last 10 days have just blurred together. Em is no better and as of yesterday now has no feeling in her leg from the knee down :( anyway, enough of my whinging at the minute. Food not too bad, I'm working all weekend so not sure what evening meals will be like. Ive got my breakfasts and lunches planned. I won't be able to do my official weigh in til Monday morning instead of Sunday .

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Ok that's just scary! I really hope they figure things out? And quickly!!! Do they have a clue yet?

Well done staying focused food wise. That must be hard :)
 
Thanks ladies

They've no idea as yet but the one thing running through everybody's mind is the only thing the docs haven't mentioned and that's MS. So we're playing the waiting game

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Really hope they find out what it is soon Hun, thinking of you x
 
Back from a productive weekend in hillingdon. But yesterday Afternoon I got a phone call from hubby who was playing merry hell with the hospital to readmit Emily. Her whole leg has lost feeling now. So we are back there from 11 this morning.

I hope they do something productive but I'm beginning to think we need to be referred to a specialist neuroligal unit.

On the down side for me though. Last week I put weight on through water retention from the heat :(

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Hi Kat, sorry to hear your daughter is no better. Its so hard when the doctors can't pinpoint what's wrong. I hope today goes well and you get some answers or at least a referral x
 
Oh Hun, I hope they figure out what's wrong soon, and I would be demanding answers if not!!! You have a right to know what's going on! Don't be afraid to speak up Hun xxx

Hugs to you and family x

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Kes said:
Oh Hun, I hope they figure out what's wrong soon, and I would be demanding answers if not!!! You have a right to know what's going on! Don't be afraid to speak up Hun xxx

Hugs to you and family x

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I agree - I hope they sort it out soon, my prayers are with you and your family - not a nice thing to be going through!!
 
Feels like so long since I've been on here. I managed to read some posts this week but not really post as we've not had Internet in the hospital unless we paid for it.

Emily is ok in herself and the hospital have been great with her. She does have a damaged nerve in her hand but the numb parts of her body are supposedly not linked totally to that nerve. The doc who did the nerve conduction tests on her did throw a rather rare (12 person) disease into the pot. The only problem is so far it's only been found in over 30's. so the paediatric doctors have never come across it. She's being transferred to QMC hospital in Nottingham as soon as they've got a bed to see the neurological specialist there but that's proving to be a slow wait so they sent us home to wait. Hopefully it won't be long. To be fair they are doing their best even though they haven't got a clue what's wrong. I just hope we get a definitive answer at some point

Food wise I've not been too bad . A little overeating every now and again, mainly relating to tiredness I think and general CBA :( but I'm more or less on track. Ill cling to Lexie's wagon by the skin of my teeth if it kills me. My Christmas goal is slipping out of my fingers though but not to worry I will achieve it at some point :)

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Good that they have a plan in place! Waiting is so hard.. I think your doing well considering the stress you must be under!
 
Well done for staying on track as much as you can, I would have given up by now and said ill do it when things are sorted.

You will achieve your goals xx

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I've been eating around my BMR cals for a few weeks now which I have to say has been handy while I've been back and forwards to the hospital with Emily and not always cared too much about what I was eating . But ive realised tonight it has to stop. I've got to get control back and cut down my cals again. I've been looking back over my records and my weight is maintaining rather than losing whilst IV'd been eating my BMR cals. I'm going to find it difficult though to cut down as I appear to have got used to them. I've used the extra because I've been so tired . On the plus side at least I know I can maintain and control it. But I've got to lose at least another 1 1/2 stone I think. I think my goal may be 12 stone but we'll see.

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I think you are doing amazing in difficult circumstances x

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