Short Circuit!

I don't understand much of neurology! I dont, it would seem, understand much about my kids these days! I do know I hate what neurological short circuits are doing to my girls!

It is exactly a month since the start of what turned out to be 12 days of constant seizure activity for Rosie....it has started again. Last evening it was a case of:- is? it isnt? is is? it isn't it???? We just couldnt be sure...of course Rosie is as capable of being really difficult without assistance of siezures but the clue is in whether you can distract her from it...yesterday there were times we could and periods when it seemed we couldnt? Should I medicate her or should I wait and see...we decided to wait and see...3am this morning I could see quite clearly this was a non distractable explosion of short circuiting! Still hoping it was going to be short lived I waited until a bit later before reaching for the rescue medicines. By 8 am when the rest of the household was up and trying to get themselves organised for the day Rosie was really unhappy and totally out of control. Doors were banging anything not nailed down was game for throwing and she had silent tears rolling down her face. Of course when you are giving rescue medicines by mouth or PEG they take at least 20 minutes to work and then everyone is struggling to cope with the effects on everyone and everything. Tempers were begining to fray and the battle to be ready for Church was in full flight.

Thankfully she tok herself off to bed for 20 minutes giving me chance to organise myself and Christina managed to get Eve dressed. Rest of medicines organised, hairs brushed and we actually managed to head off to Church with everything we had to take....it was Harvest Festival this morning so box of veg and returning slow cooker and five children and self and keys and I think we almost made it....half way there I realised I had left my bag behind so no purse....hope God has no objection to me playing catch up on my tithing!

It was also Girls Brigade Boys Brigade parade Sunday so Christina was in uniform and we arrived at Church in plenty of time for her to prepare for the parade....a first in a while it is usually a case of throw her out the car as we pass Church to find a parking space! On a Parade Sunday I have to park in the car park rather than on the Church drive....this means we have to take both girls chairs out the bus or carry Rosie....this morning it was deffinitely take chair...Rosie was in octopus mode with arms and legs flailing in all directions...a positive danger to anyone passing close by.

Of course being Harvest Service the Church was decorated with lots of greenery and there was fruit and veg all over the place! Perfect misiles for a girl on a mission to destroy all in her wake! Thankfully Rosie is loved in Church and therefore I am not fretting over her upsetting anyone....however it was necesary to warn people of a Rosie on a rampage entering the building...Ladies watch your hair, jewelry and handbags! There were a few instances of necklace tug and a few extra bald patches around but mostly they dodged her fine.

In stark contrast Eve slept, opening her eyes only to Uncle Fred's Voice and he was rewarded with a smile before she closed them again and drifted off. It was hard not to let the constantly repeated question of "Is Eve better now then?" hurt too badly, it was a question asked with love and hope but answered with sadness, no not really. Her breathing is better but she is sleeping most of the time and we really dont know what is happening and whether she will get any better than she is.

Once the Service started Rosie found Sarah and settled briefly before stomping back to the back and sitting on Sue's lap....then back to Sarah and dragged her to the back....then Sarah had to go to the front to be presented with Girls Brigade awards and then a gift from the Church as she leaves to go to University.....all this with Rosie in her arms....then people were asked to come and pray for her...I felt it best to extricate Rosie from her arms at this point and Rosie was not impressed....as soon as the prayer time was over Rosie again went to sit with her up front! I am so glad Rosie is truly loved! What on earth is she going to do when Sarah disappears for 10 weeks or more?

Thankfully a mixture of regular and rescue medicines had got the better of the seizures for a while and the rest of the service went without too much Rosie interuption, and then tea and Coffee and more questions on Eve's recent hospital admission....I wonder if some of the older people actually understand that Eve is really not going to get better? How do I answer their questions....I really dont have any answers and certainly not ones they want to hear.

So we came home for dinner....for once I had made an effort and got a roast dinner ready...David had done the finishing off and the veg was even cooked as we arrived home. There are some perks to being up from 3 am!
Rosie has again taken herself to bed having given up on trying to eat whilst so stressed and agitated she cant sit down for 10 seconds....how long do I let her sleep and will she sleep tonight and how will school deal with her? And how do I know what meds to give when and how much....I really wish we could have an EEG window on her head to know what is seizure and what isnt....especially so others can really see this is not something she has any control over no matter how much they think she can nor how much they think she is juts being really naughty!

Eve is asleep again now....I say again I dont think she has woken more than a few moments to smile and Fred, and then at Nic. She is asleep on Daddy's lap with an occasional smile as she hears his voice. Daddy is watching the Formula one...totally oblivious it would seem to the issues under his nose!

Sorry a ranty, moany, miserable post! An offload of what is happening here....So much going on in family and friends around and about. A total lack of ability to keep in contact properly with those I care about....if you are one of those then I am sorry...you are in my prayers and God knows the details I have not been able to gather. Handing it all to Him!

The Sun is shining and Joshua and Christina are outside playing...it is good to hear them being kids again after the stress of the last fornight. This coming week holds a lot of appointments and worries, so we will let them play with few responsibilities today.
Your prayers are so apreciated!
Tina
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