Day 18 now..i think???? Well the last week has been full of up days and down days. Some days she has been really great, only a few seizures and minor ones at that. Then the next day she has lots of big ones and has continued so since. Today is a down day :( Having lots of big ones today. But had a great day yesterday.
Waiting in anticipation for the doctor's round in the morning......
Sunday, October 31, 2010
Wednesday, October 27, 2010
Day whatever and a bit
Lilly is improving...Yay! Only 4-5 seizures a day now compared to 20-30 before...the new medications are starting to have an effect! Unfortunatley this means she is on a myriad of drugs, and they are tentativley reducing one or two, ever so carefully so as not to disturb the delicate balance and set her off again...ooooh it is like playing JENGA!
Seen the Genetics team, lilly has an extra bit on chromosone 3, whatever that means, so jase and i had to give our blood for chromosone testing to see if there is a genetic link. That will take a month or so to find out. Then a plan to do another MRI of her brain under anaesthetic and do the Lumbar Puncture then...just as well really.
Due to the delicacy of titrating her medication and her tendancy to fit whenever stimulated, we are staying in a few more days, at least until we are either seizure free ( if thats possible now ) or down to one -two a day. So who knows???? Hmmmm this is an interesting chpter of our lives, pity we can't proofread it first or edit it after!
Seen the Genetics team, lilly has an extra bit on chromosone 3, whatever that means, so jase and i had to give our blood for chromosone testing to see if there is a genetic link. That will take a month or so to find out. Then a plan to do another MRI of her brain under anaesthetic and do the Lumbar Puncture then...just as well really.
Due to the delicacy of titrating her medication and her tendancy to fit whenever stimulated, we are staying in a few more days, at least until we are either seizure free ( if thats possible now ) or down to one -two a day. So who knows???? Hmmmm this is an interesting chpter of our lives, pity we can't proofread it first or edit it after!
Sunday, October 24, 2010
Day 11
Well it's day 11 of this hospitalisation. Longest time yet! has all become a bit of a blur of late, totally lost track of the days and dates etc, and what has happened when! Almost in zombie mode now, get up go to hospital, go home after tea, go to bed, repeat...except for important days when i need to see the docs then it's sleepover at the WCH!
at least 7 seizures witnessed today, i think, losing count but that is decidedly less than previous days so that's something! slight temp today, given panadol. probably picked up some other nasty bug being in hospital.
Otherwise happy in herself, playing and smiling and babbling away. It's a good day today! :)
Plan for tomorrow...Lumbar Puncture to test spinal / cerebral fluid for metabolic disorders. Some test results back! They are normal, so don't shed anymore light on the situation. But it is good that they are normal.
Calling it Epilepsy with Developmental Delay until a diagnosis is found, which won't be for a very loooooong time i think.
wondering how much longer this is going to go on for????? Only lilly can answer that.........
at least 7 seizures witnessed today, i think, losing count but that is decidedly less than previous days so that's something! slight temp today, given panadol. probably picked up some other nasty bug being in hospital.
Otherwise happy in herself, playing and smiling and babbling away. It's a good day today! :)
Plan for tomorrow...Lumbar Puncture to test spinal / cerebral fluid for metabolic disorders. Some test results back! They are normal, so don't shed anymore light on the situation. But it is good that they are normal.
Calling it Epilepsy with Developmental Delay until a diagnosis is found, which won't be for a very loooooong time i think.
wondering how much longer this is going to go on for????? Only lilly can answer that.........
Monday, October 18, 2010
New Plan of Action!
Today is day 6 in WCH.... for those of you who don't already know, Lilly has been having seizures for the last two months which have not been responding to the usual medications used to stop them. This along with her other issues of dysphagia ( difficulty swallowing ), Nystagmus, ( jerky eye movements sometimes resulting in vision impairment) and developmental delay has compounded the initial problem and making the doctors scratch their heads to find the cause. This is her 5th hospital admission in 2 months since she turned 6 months old. Lilly now has a nasogastric tube inserted in her nose which goes in to her stomach so she can have the medications as due to her dysphagia she would choke on them otherwise.
So the plan is to get the seizures under control so we can manage her care at home. Easier said than done..apparently. Levels being done this afternoon to see if the tegretol levels in her blood are sufficient enough to stop the fits. If the level is up but she is still fitting ( which currently she is ), we need to look at trying other medications. The fits and the medications both make lilly drowsy so she is not able to feed properly until it's all under control. currently being fed through the nasogastric tube. Hoping to get sorted in next couple of days...fingers and toes crossed!
Every test that they can think of has been sent off, or booked. It will be a while before we get any results or any closer to identifying the cause of lilly's issues, so in the meantime it's a matter of management and control of the current problems until we get results e.t.c.
The doctors and nurses have been very supportive. The hardest thing is leaving her here of a night time every second night...i decided to do alternate nights at hosp and home...to keep me intact but also to spend time with jase and the girls. Have to remember i have two other daughters who need me too, and a hubby who is doing most of the running around and holding the house together while this is all going on!
Lilly is getting visitors this afternoon...exciting! She loves cuddles and i'm sure she will get a whole heap!
Well that's it for now...catch u soon. xx
So the plan is to get the seizures under control so we can manage her care at home. Easier said than done..apparently. Levels being done this afternoon to see if the tegretol levels in her blood are sufficient enough to stop the fits. If the level is up but she is still fitting ( which currently she is ), we need to look at trying other medications. The fits and the medications both make lilly drowsy so she is not able to feed properly until it's all under control. currently being fed through the nasogastric tube. Hoping to get sorted in next couple of days...fingers and toes crossed!
Every test that they can think of has been sent off, or booked. It will be a while before we get any results or any closer to identifying the cause of lilly's issues, so in the meantime it's a matter of management and control of the current problems until we get results e.t.c.
The doctors and nurses have been very supportive. The hardest thing is leaving her here of a night time every second night...i decided to do alternate nights at hosp and home...to keep me intact but also to spend time with jase and the girls. Have to remember i have two other daughters who need me too, and a hubby who is doing most of the running around and holding the house together while this is all going on!
Lilly is getting visitors this afternoon...exciting! She loves cuddles and i'm sure she will get a whole heap!
Well that's it for now...catch u soon. xx
Welcome
Well, here we are, i have created my very first Blog! Created so i could easily update everyone on lilly's condition and progress and also put some of my feelings into perspective about the whole thing. Thanks to Cassie for the idea! Welocme! The idea is to post updates for friends and family, and journalise the events as they happen etc.
May take a while to get up and running, so be patient as lilly is still in hospital and i am a bit everywhere at the moment! Feel free to leave comments and i will try to get back to you as soon as i can.
May take a while to get up and running, so be patient as lilly is still in hospital and i am a bit everywhere at the moment! Feel free to leave comments and i will try to get back to you as soon as i can.
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