Well I have to say today has been the best day since then so
far.
It has been long and stressful to say the least over the past week. But
I have to say we are holding it together and holding the love very much still
and really feel things are moving forward. We believe very strongly that Kiwi is
moving through some very powerful things not knowing where that will lead us or
what the next hill will be we still remain in trust. She continued to have
seizures up until Tuesday night... She would have about 2-4 a day still not
lasting more than a minute or really taking her out much. We changed things
over those days and even though her irritability is still heightened and she is
having major fits or agitation. It was very much improved today only a few
episodes that ended easier and more calmly. We see that as a good step along
with no seizures. We have really been doing research and working with Kiwi in
how much she can handle to get her up to the maximum of her protocols also with
the changes and additions we made because of the seizures. We are scheduled for
a MRI Wednesday. Tuesday night the last night of her seizure was pretty crazy.
We ended up using some ativan because she was having a major issue with
agitation that lead to a seizure. Well I know I have mentioned this before but
ativan causes insomnia in Kiwi. So giving this at 8pm meant a long night.
Combining that with agitation we ended up being up until about 5 am with her
trying everything from lavender essential oils chamomile tea turning the lights
out and lighting candles tricks this and that nothing convinced her she wanted
to go to bed and she was on the verge of a breakdown. So at 330 we decided to
go to the hospital in fear the lack of sleep could cause a seizure. Well we
drove up there and just about there she fell asleep, we drove around a little
more to make sure it was the real deal and drove home to climb into bed at
about 530. It was emotionally and physically difficult to say the least but we
got through ti with love intentions and strong wills that we are going to heal
our little girl no matter what we go through.
She seems to have a very
obsessive like issue. She gets her mind set on things and she can't shift it. I
mean she will ask for very out there things like driving in the middle of the
night to get something random like pretzels from the store. And it isn't like a
normal 3 year old tantrum I mean she will literally lose it for half an hour or
more until she gets it or falls asleep. And it is like she is some wild animal
in some hysterical mode. The neurologist has said that the placement of the
tumors could irritate a specific area that deals with this type of
processing..... We are looking to support her through this and suggestions that
could help manage this.
We have been making a lot of progress with finding
more information. We have been talking with parents who have been proactive in
alternative treatments with success. Granted I have the time I will be putting a
post up about more detailed info on the products we use for Kiwi and some other
therapies and resources we have been using. It may just come along with the
website change that we are doing. Please keep posted and keep sending the love.
It is making a difference......
far.
It has been long and stressful to say the least over the past week. But
I have to say we are holding it together and holding the love very much still
and really feel things are moving forward. We believe very strongly that Kiwi is
moving through some very powerful things not knowing where that will lead us or
what the next hill will be we still remain in trust. She continued to have
seizures up until Tuesday night... She would have about 2-4 a day still not
lasting more than a minute or really taking her out much. We changed things
over those days and even though her irritability is still heightened and she is
having major fits or agitation. It was very much improved today only a few
episodes that ended easier and more calmly. We see that as a good step along
with no seizures. We have really been doing research and working with Kiwi in
how much she can handle to get her up to the maximum of her protocols also with
the changes and additions we made because of the seizures. We are scheduled for
a MRI Wednesday. Tuesday night the last night of her seizure was pretty crazy.
We ended up using some ativan because she was having a major issue with
agitation that lead to a seizure. Well I know I have mentioned this before but
ativan causes insomnia in Kiwi. So giving this at 8pm meant a long night.
Combining that with agitation we ended up being up until about 5 am with her
trying everything from lavender essential oils chamomile tea turning the lights
out and lighting candles tricks this and that nothing convinced her she wanted
to go to bed and she was on the verge of a breakdown. So at 330 we decided to
go to the hospital in fear the lack of sleep could cause a seizure. Well we
drove up there and just about there she fell asleep, we drove around a little
more to make sure it was the real deal and drove home to climb into bed at
about 530. It was emotionally and physically difficult to say the least but we
got through ti with love intentions and strong wills that we are going to heal
our little girl no matter what we go through.
She seems to have a very
obsessive like issue. She gets her mind set on things and she can't shift it. I
mean she will ask for very out there things like driving in the middle of the
night to get something random like pretzels from the store. And it isn't like a
normal 3 year old tantrum I mean she will literally lose it for half an hour or
more until she gets it or falls asleep. And it is like she is some wild animal
in some hysterical mode. The neurologist has said that the placement of the
tumors could irritate a specific area that deals with this type of
processing..... We are looking to support her through this and suggestions that
could help manage this.
We have been making a lot of progress with finding
more information. We have been talking with parents who have been proactive in
alternative treatments with success. Granted I have the time I will be putting a
post up about more detailed info on the products we use for Kiwi and some other
therapies and resources we have been using. It may just come along with the
website change that we are doing. Please keep posted and keep sending the love.
It is making a difference......
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