Photo just because
21 February 2021
Seizure monitor for our 13yr old daughter
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Leahs eeg results.
21 February 2021We had our follow up appointment on the 16th of Feb to get leahs eeg results and a plan to move forward. Her eeg results so that there is damage to the right frontal lobe of her brain which is what's starting the seizures and from there it sets off the whole brain. She is now waiting for a date for a MRI scan to find out how bad this damage is. But it has also given us the answer as to why she has seizures as the damage to her brain was caused when she got sick with rare auto immune disease called ADEM (immune system attacked her brain and spine) when she was 5yrs old. Plan ahead is to keep doing the medication she is on to control the seizures and try to keep leah being as normal as she can.... being told she won't out grow the seizures and it's with her for rest of her life has been a bit of a blow for her, she's feeling very down and sad as she just wants to go bk to normal. Hoping that when we reach our goal and can get the other things she needs that this can happen. Thankyou all so much for you help and support we truly appreciate everything. ❤
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Sleep
5 February 2021Wow it's been so wonderful to get sleep now we have the bed alarm. We still have a little bit to go before we can get the watch to notify us if she has a seizure at school or while she is out and about. This would be helpful for school, sports, and an up coming camp she wants to go on but we aren't feeling good about. Please keep sharing and thankyou for everything u have all done so far. We appreciate it.
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Emfit seizure alarm
26 January 2021It arrived, the first bit to keeping our girl safe, we can now sleep knowing that if our daughter has a seizure during the night her bed alarm will go off to wake us up to look after her. Thankyou so much for supporting us and helping us get this. We still have a bit to go so we can get her a watch for school that will do the same and alert us of seizures during the day.
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EEG
15 January 2021Today was absolutely horrible. 2 seizures before and then her biggest seizure at the end of her EEG. And then another in avo resulting in a stay for observation in hospital again. She's now been put on keppra to try and control the seizures. Will get results of EEG on 16th Feb. Also have with drawn some of the give a little funds and the bed alarm is on its way. Thankyou so much for your support. Just a watch for school next.
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Support
13 January 2021Had the most amazing epilepsy nz support worker come out today to help our family with all the understanding of how the seizures work and explaining what's going on in the brain. The older kids in our whanau now know how they can help during a seizure or what to do if I'm not right there when it happens. There may not be funding for safety alarms etc but there is mental support to help the family come to terms with the changes.
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Getting so close
12 January 2021With everyone's help we are able to send threw a early release of funds to give a little so we can get the bed alarm. This will mean we will actually be able to sleep without worrying abt seizures being missed and she will get to have her own room back instead of sleeping next to us on a mattress. This is just the first step, along with this we still need more funds so we can get our daughter the embrace2 watch, this will help her at school, something she is very scared abt as she's starting high school this yr. So a huge huge thankyou for all the help so far, it's truly appreciated.
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Increased costs due to freight and gst
4 January 2021I have got the final cost for the bed alarm and it's more than we realized as freight and gst have to be paid also.
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