Its been a while since I have put an update due to it not being as positive as the last lot
Since the turn of the year her medication has been changed to try and find one that will help her and as of yet nothing is working to stop her having fits , She has been having blood tests to see if the medication is getting into her system which it is .
They have said her fits are uncontrolable and her epilepsy is one of the most complicated they have ever seen and since been passed to another hospital in London , She has to attend an appointment 70 miles away on the 30th of march without a release date to basically be monitored 24hours a day by video and also from what I can remember she will be plugged into a EGC machine . It looks like it will be the best part of a week for her stuck in a hospital bed .
There is then an appointment on the 9th of April to go over the results and as it stands its looking like this will be the one to book her in for major brain surgury to remove aprox 50% of her brain depending on where the tubours are , If there on part of the brain they cannot remove then its a basic your stuck with it
Shes getting on well with her walking now but still having problems on her left side of her body , shes now also saying approx 5 words with what she know the meaning - Mum , Dad , Brandon , Juice and of course the main one with is NO
.
A little picture of my angel as she had her first christmas at home at the age of 2 without being in hospital
The little boy also said he wants to have his picture put up as you lot dont know who Brandon is
Brandon is the other child who believe it or not uses all our energy rather than beth , beth is placid and Brandon is hyper as he has ADHD and OCD (bad mixture i can tell you ) Which is 2 other effects from what Beth has but we are all waiting to be tested to see where beth got her condition from , Hes 4 years old with the mental age of a 9 year old and the vocab of a 10 year old and boy he doesnt shut up alday long
. a lot of people just call him Energy Boy , As much as a pain in the ass as he is he actually help us get through a lot of it as he is so loving at times (violent at other times) and the comments he makes you would think he knows more about Beths things than we do at times .
Anyway enough of me going on as I actually have lumps in my throat and tears in my eyes as it is all becoming a lot to deal with ,
Here is
ENERGY BOY
Since the turn of the year her medication has been changed to try and find one that will help her and as of yet nothing is working to stop her having fits , She has been having blood tests to see if the medication is getting into her system which it is .
They have said her fits are uncontrolable and her epilepsy is one of the most complicated they have ever seen and since been passed to another hospital in London , She has to attend an appointment 70 miles away on the 30th of march without a release date to basically be monitored 24hours a day by video and also from what I can remember she will be plugged into a EGC machine . It looks like it will be the best part of a week for her stuck in a hospital bed .
There is then an appointment on the 9th of April to go over the results and as it stands its looking like this will be the one to book her in for major brain surgury to remove aprox 50% of her brain depending on where the tubours are , If there on part of the brain they cannot remove then its a basic your stuck with it
Shes getting on well with her walking now but still having problems on her left side of her body , shes now also saying approx 5 words with what she know the meaning - Mum , Dad , Brandon , Juice and of course the main one with is NO
.A little picture of my angel as she had her first christmas at home at the age of 2 without being in hospital
The little boy also said he wants to have his picture put up as you lot dont know who Brandon is
Brandon is the other child who believe it or not uses all our energy rather than beth , beth is placid and Brandon is hyper as he has ADHD and OCD (bad mixture i can tell you ) Which is 2 other effects from what Beth has but we are all waiting to be tested to see where beth got her condition from , Hes 4 years old with the mental age of a 9 year old and the vocab of a 10 year old and boy he doesnt shut up alday long
. a lot of people just call him Energy Boy , As much as a pain in the ass as he is he actually help us get through a lot of it as he is so loving at times (violent at other times) and the comments he makes you would think he knows more about Beths things than we do at times . Anyway enough of me going on as I actually have lumps in my throat and tears in my eyes as it is all becoming a lot to deal with ,
Here is
ENERGY BOY
