With things being as hectic as they have been lately, I am getting respite organised. The DSAV is helping me get emergency respite through the Commonwealth Govt that should start later this week. Someone will help care for Sheena for 6 hours on a Tuesday and 4 hours on a Thursday. It will give me some much-needed breathing space. This will only be for a few weeks, until longer term respite is arranged through the Local Council. They have to come and do an assessment tomorrow, so it will take a while for that to commence. The Emergency respite is free, but there will be a nominal charge for the Local Council care.
Sheena cried for 5 hours this afternoon. It was horrendous, nothing would calm her, and she had terrible reflux. She finally fell asleep at 5.30pm, exhausted after no afternoon nap. As she's got so many other issues, they all blend into each-other, and its hard to work out what is causing what. No more diluted apple juice for Sheena!!!
The other big news of the day, is that Sheena had another EEG. There is still no evidence of hysarrythmia, so that is good. This morning she had a 20 second seizure while I was trying to offer her solids in her high chair. She jolted her shoulders continuously, her eyes looked blank and to the right, and she went silent. It was really, really scary. A lot more obvious than her usual spasms. I told the EEG technician and she said that as kids get older, their epilepsy can evolve as their brain matures. I also ran into one of her Neurologists on the ward, and he said that seizures can start to look different as you alter medication.
Here is our lovely Sheena at the end of last month in her corner chair.
3 comments:
It was very brave of you to go to that camp - I hope that Sheena starts to 'thrive' like those others soon. She is so lovely in your photoes. She is clearly surrounded in love and the very best care. Glad that you are getting some repite care - it is the only way to maintain your sanity so that you can continue helping Sheena so well. All the best.
It will really help you to get respite care! Sometimes we all just need a little help! Joey can drink apple juice but no bananas for him, they give him awful reflux!
I hope the respite works out for you...sounds like you could really use it after the 5 hr crying - wow! Poor Sheena, that must have really worn her out (not to mention you!)
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