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Well, as the title suggests we are chilling out in sunny Florida. It's great to have time with eleanor and my husband mark. Just having time to enjoy being together has been fantastic. sometimes i feel like i 'hide behind work' to avoid having to cope with all the stuff that needs doing at home, but then i feel as though i don't have time jut to enjoy ellie for who she is. eleanor is loving it - least best as we can tell.
It's been a tough few months. since the seizures started again a year ago we have struggled to get them under control and have had to come to terms with fits on a near hourly basis. Progress hasn't been great, particularly in combination with certain drugs that we've had to try for the fits. Nothing touches them. We are now waiting to see if surgery is an option - a scary option, but worth considering if it means that she can have a chance of a seizure free life.
Hemiplegia wise, just a few days ago eleanor managed to sit up from lying for the first time - and the day after repeated the movement! At just over two it's really really amazing to see her do it. She can't do it all the time yet - mostly she has to be REALLY frustrated. Eleanor goes to a conductive education nursery two mornings a week and is thriving there. She is now walking really well, provided someone holds her hands and supports her. So that's kindof where we are. Hope everone else is doing good and best get ready to head to Disney world for the day!
It's been a tough few months. since the seizures started again a year ago we have struggled to get them under control and have had to come to terms with fits on a near hourly basis. Progress hasn't been great, particularly in combination with certain drugs that we've had to try for the fits. Nothing touches them. We are now waiting to see if surgery is an option - a scary option, but worth considering if it means that she can have a chance of a seizure free life.
Hemiplegia wise, just a few days ago eleanor managed to sit up from lying for the first time - and the day after repeated the movement! At just over two it's really really amazing to see her do it. She can't do it all the time yet - mostly she has to be REALLY frustrated. Eleanor goes to a conductive education nursery two mornings a week and is thriving there. She is now walking really well, provided someone holds her hands and supports her. So that's kindof where we are. Hope everone else is doing good and best get ready to head to Disney world for the day!
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