I just wanted to drop a quick line to say that Alexander will soon have
another brother or sister!  I was completely suprised yesterday to find
that I am pregnant- needless to say we were not planning another baby
so soon as Alexander just turned 3, Daniel 15 mos., and now a new
little one!!  Eventhough I am scared to death about how we will manage
3 babies- I am very excited too!
Alexander has had a rough couple weeks, and almost non-stop seizures-
but he did smile when he heard our big news!
I hope eveyone is well and I think of you often!

Thank you everyone for your kind words.
Allison, I an not sure the answer to your questions. I need to
contact Dr. Marsh again and see where we stand.  I really appreciate
your offer to help with gathering info.  That is definitely not my
strength.  I know there were specific test and info that he felt
would be helpful.  I will try and work on this and let you know.
Thank you,
Jennifer

--- In MPEIparentsupportgroup@yahoogroups.com, "Alison Maguire"
<alisonmaguire@...> wrote:
>
> Hi Jennifer
>
> It does sound a lovely party and a very worthwhile thing to do
despite the
> hard work.
> We were also inspired by Denise to hold a 4th B'day party for Niamh
in June
> and we had over 100 people in our back garden (at a squeeze!) and
although
> it felt like a nightmare to organize I am really glad we did it as
she got
> very ill and ended up in hospital the next week. (Not obviously
that Micah
> will do the same but what I am trying to say is that you never know
what is
> round the corner with our little ones so you have to live each day
as if it
> is special).
>
> Thanks for the info on Dr Marsh. Where is he based?
> Does he want us to gather info from each other before he becomes
involved of
> does the info have to come directly from our kids doctors?
> I would be happy to start putting together a basic questionnaire for
> everyone to complete (and email back to me) and then collating the
results
> if that is what everyone wants to do?
>
> Alison
>
>
>
>
>
> 2008/9/28 whitley.denise <whitley.denise@...>
>
> >   Hi,
> > That sounds like such a wonderful day, full of love and
happiness. Im
> > happy that Harry's celebration inspired your day. It is a comfort
to
> > me to that we always made the most of not just milestones, but
family
> > traditions, or even just a day when the sun was shining by
surrounding
> > Harry with people that loved him. In his short life he touched so
many
> > people..and changed the way many people lived there lives. A lot
of
> > our friends and family say their priorities have changed through
> > sharing Harry's life. Money and work seem less important. Family,
> > friends, children, loving and enjoying life are top priorities.
> >
> > Jennifer your daughters sound lovely girls, really compassionate
and
> > empathic. I've no doubt you are both so proud of their ability to
> > consider others before themselves. My daughters are 14yr old
twins,
> > and my other son is 19. I am so proud of how they have been over
the
> > last five years. They havent only had to share their mum with
their
> > younger brother, they had to do without me for a lot of the time
since
> > Harry's care needs were so great. They have the usual sibling
> > arguments from time to time, but they are compassionate and
empathic
> > towards others and they have a real passion for tackling
oppression
> > and discrimination in society. They raise money for Claire house
and
> > we support a child in another country.
> > D
> >
> > --- In
MPEIparentsupportgroup@yahoogroups.com<MPEIparentsupportgroup%
40yahoogroups.com>,
> > "Jennifer Patchin"
> > <patchinfamily@> wrote:
> > >
> > > I tryed to type and post this earlier in the week but some how
it
> > got
> > > erased.
> > > Our precious Micah turned 4 years old on September 5th. Our 2
> > > daughters also have September birthdays, so we celebrated last
> > > weekend in the park for all 3 of them. We had over 80 people
come.
> > > We were surrounded by our family, friends, church, neighbors and
> > > caregivers. It was a lovely day of celebrating life. We felt so
> > > loved and supported by so many. We have never really done
anything
> > > official to celebrate Micah's birthday. But I was truly
inspired by
> > > Denise. I remember reading about your celebration for Harry's
5th
> > > birthday and all the pictures and memories you created. At
first I
> > > thought that seemed like a lot of work, but when Harry passed
away a
> > > few short weeks later I was so grateful that you had that
wonderful
> > > day to remember. I knew that I needed to celebrate Micah's
birhtday
> > > this year.
> > > We also talked to our girls about gifts since we were inviting
so
> > > many people. They agreed to not accept gifts but that people
could
> > > give in there honor to a fund we are starting called "Micah 6:8"
> > and
> > > to buy mosquito nets for children in Africa. Our oldest daughter
> > > Victoria(15) has a heart for the 3rd world and wanted to
support in
> > > this way. We all have a heart to help other families who have a
> > child
> > > with severe disabilities. We raised over $300 toward these two
> > > charities. But we also increased a heart of giving in our
children
> > > that they were truly thrilled to recieve $ to help others.
> > > Micah 6:8 is a bible verse. We picked this verse to be our sons
> > life
> > > verse even before he was born. But now we look at it with
different
> > > eyes.
> > > It says "The Lord has already told you what is good, and this is
> > what
> > > he requires:
> > > To do what is right
> > > To love mercy and
> > > To walk humbly with your God"
> > > I pray that all your little ones are well. You all are in my
> > > thoughts and prayers and I hope to hear how you are doing.
> > >
> > > I didn't really say how Micah is. He is doing so well at the
> > > moment. These last couple months have been the most stable. We
see
> > > a lot more smiles, an occasional coo. He is so much more aware
of
> > > his enviroment and so much more responsive to people and things
that
> > > are familiar. He has stayed healthy. We have had some concern
> > about
> > > discharge in his urine that also seems painful. Had an ultra
sound
> > > yesterday and hope to figure it out. We are also starting to
ween
> > him
> > > down from the ketogenic diet. He has a school program that is
very
> > > attentive to trying to push him visually and physically. It
always
> > > surprises me how well he responds.
> > > So we will enjoy these moments, knowing the difficult is sure to
> > > come. We pray that each moment of each day we can live to its
> > > fullest.
> > > I pray that for each of you too.
> > > Much love,
> > > Jennifer
> > >
> >
> >
> >
>

Hi,
That sounds like such a wonderful day, full of love and happiness. Im
happy that Harry's celebration inspired your day. It is a comfort to
me to that we always made the most of not just milestones, but family
traditions, or even just a day when the sun was shining by surrounding
Harry with people that loved him. In his short life he touched so many
people..and changed the way many people lived there lives. A lot of
our friends and family say their priorities have changed through
sharing Harry's life. Money and work seem less important. Family,
friends, children, loving and enjoying life are top priorities.

Jennifer your daughters sound lovely girls, really compassionate and
empathic. I've no doubt you are both so proud of their ability to
consider others before themselves. My daughters are 14yr old twins,
and my other son is 19. I am so proud of how they have been over the
last five years. They havent only had to share their mum with their
younger brother, they had to do without me for a lot of the time since
Harry's care needs were so great. They have the usual sibling
arguments from time to time, but they are compassionate and empathic
towards others and they have a real passion for tackling oppression
and discrimination in society. They raise money for Claire house and
we support a child in another country.
D

--- In MPEIparentsupportgroup@yahoogroups.com, "Jennifer Patchin"
<patchinfamily@...> wrote:
>
> I tryed to type and post this earlier in the week but some how it
got
> erased.
> Our precious Micah turned 4 years old on September 5th.  Our 2
> daughters also have September birthdays, so we celebrated last
> weekend in the park for all 3 of them.  We had over 80 people come.
> We were surrounded by our family, friends, church, neighbors and
> caregivers.  It was a lovely day of celebrating life.  We felt so
> loved and supported by so many.  We have never really done anything
> official to celebrate Micah's birthday.  But I was truly inspired by
> Denise.  I remember reading about your celebration for Harry's 5th
> birthday and all the pictures and memories you created. At first I
> thought that seemed like a lot of work, but when Harry passed away a
> few short weeks later I was so grateful that you had that wonderful
> day to remember.  I knew that I needed to celebrate Micah's birhtday
> this year.
> We also talked to our girls about gifts since we were inviting so
> many people.  They agreed to not accept gifts but that people could
> give in there honor to a fund we are starting called "Micah 6:8"
and
> to buy mosquito nets for children in Africa.  Our oldest daughter
> Victoria(15) has a heart for the 3rd world and wanted to support in
> this way. We all have a heart to help other families who have a
child
> with severe disabilities.  We raised over $300 toward these two
> charities.  But we also increased a heart of giving in our children
> that they were truly thrilled to recieve $ to help others.
> Micah 6:8 is a bible verse.  We picked this verse to be our sons
life
> verse even before he was born.  But now we look at it with different
> eyes.
> It says "The Lord has already told you what is good, and this is
what
> he requires:
> To do what is right
> To love mercy and
> To walk humbly with your God"
> I pray that all your little ones are well.  You all are in my
> thoughts and prayers and I hope to hear how you are doing.
>
> I didn't really say how Micah is.  He is doing so well at the
> moment.  These last couple months have been the most stable.  We see
> a lot more smiles, an occasional coo.  He is so much more aware of
> his enviroment and so much more responsive to people and things that
> are familiar.  He has stayed healthy.  We have had some concern
about
> discharge in his urine that also seems painful. Had an ultra sound
> yesterday and hope to figure it out. We are also starting to ween
him
> down from the ketogenic diet. He has a school program that is very
> attentive to trying to push him visually and physically.  It always
> surprises me how well he responds.
> So we will enjoy these moments, knowing the difficult is sure to
> come.  We pray that each moment of each day we can live to its
> fullest.
> I pray that for each of you too.
> Much love,
> Jennifer
>

I tryed to type and post this earlier in the week but some how it got
erased.
Our precious Micah turned 4 years old on September 5th.  Our 2
daughters also have September birthdays, so we celebrated last
weekend in the park for all 3 of them.  We had over 80 people come.
We were surrounded by our family, friends, church, neighbors and
caregivers.  It was a lovely day of celebrating life.  We felt so
loved and supported by so many.  We have never really done anything
official to celebrate Micah's birthday.  But I was truly inspired by
Denise.  I remember reading about your celebration for Harry's 5th
birthday and all the pictures and memories you created. At first I
thought that seemed like a lot of work, but when Harry passed away a
few short weeks later I was so grateful that you had that wonderful
day to remember.  I knew that I needed to celebrate Micah's birhtday
this year.
We also talked to our girls about gifts since we were inviting so
many people.  They agreed to not accept gifts but that people could
give in there honor to a fund we are starting called "Micah 6:8"  and
to buy mosquito nets for children in Africa.  Our oldest daughter
Victoria(15) has a heart for the 3rd world and wanted to support in
this way. We all have a heart to help other families who have a child
with severe disabilities.  We raised over $300 toward these two
charities.  But we also increased a heart of giving in our children
that they were truly thrilled to recieve $ to help others.
Micah 6:8 is a bible verse.  We picked this verse to be our sons life
verse even before he was born.  But now we look at it with different
eyes.
It says "The Lord has already told you what is good, and this is what
he requires:
To do what is right
To love mercy and
To walk humbly with your God"
I pray that all your little ones are well.  You all are in my
thoughts and prayers and I hope to hear how you are doing.

I didn't really say how Micah is.  He is doing so well at the
moment.  These last couple months have been the most stable.  We see
a lot more smiles, an occasional coo.  He is so much more aware of
his enviroment and so much more responsive to people and things that
are familiar.  He has stayed healthy.  We have had some concern about
discharge in his urine that also seems painful. Had an ultra sound
yesterday and hope to figure it out. We are also starting to ween him
down from the ketogenic diet. He has a school program that is very
attentive to trying to push him visually and physically.  It always
surprises me how well he responds.
So we will enjoy these moments, knowing the difficult is sure to
come.  We pray that each moment of each day we can live to its
fullest.
I pray that for each of you too.
Much love,
Jennifer

Hello everyone.  It has been a while since I have posted.  WE were
gone most of the summer and still trying to adjust to a new school
year and schedule.  Becky, I just wanted to say that my husband and I
went to see Dr. Marsh in August.  I still need to do some follow up
with him but just so you all know, He originally did his research out
of curiosity when he had a patient that was having migrating
seizures.  Like we all have experienced this was rare and he had
never seen it before.  So he started asking around to other docs and
was able to compile a little info.  So his published work on 6
patients was the accumulation of several docs at his hospital and 2
from a near by hospital.  He since has not really followed up with
those patients.  And although his paper seems more optomistic he
knows that at least 2 of those patients have died.  He has not
treated any other children with MPEI since the publishing of his
paper.  So once again we were reminded of how rare this disease or
syndrome as Dr.Marsh says is. We had hoped that he would have a list
of families to connect us with or statistics of more children as to
their treatment, development and outcome. That was not the case.
Dr. Marsh is a very kind, gentle and compassionate man.  He truly
desires to do research on developmental epilepsy's.  However to
pursue further research on MPEI has its stumbling blocks.  We talked
about how to gather info from all the families since we are across
the globe and not at the same hospital.  He had some genetic test in
mind that he was going to talk to a genetic doc about. He was also to
get back to me about some other family run websites for rare
diseases.
Basically his suggestion was that we start a international website
for MPEI.  He would be willing to be the overseeing doc.  There we
could gather info and give info to help further research.  He would
be able to read EEG and MRI.  ANother thing we learned from him is
that MPEI is not an official syndrome on the International Epilipsy
Foundation or what ever it is called.  Because there is no known
etiology and little research it is pending official status.  Perhaps
if we could raise awareness and gather more info we could have it
officially recognized.
Dr. Marsh, as well as other neurologist we have spoke to believe that
in the next 10-20 years with technology we will be able to determine
the cause of MPEI with perhaps as little as a blood test.  So in the
mean time we really feel led to stand in the gap and try to help
others who come behind us.
We were encouraged and excited after meeting with Dr. Marsh.  We were
able to spark his interest in further research of MPEI and I think we
were the first parents he had met with that wanted to help make that
happen. However, since then we have not connected.  I need to send
him Micah's eeg and he needs to send me the other websites as well as
follow up with the genetic tests. He also mentioned another doc
friend, I believe in Chicago who had thought about doing research on
MPEI.  SOunds like he may have seen more patients.  So we encouraged
him to talk to him as well as Dr. Appleton and Dr. Coppola.  We will
see what happens.  I need to do my part too.
So as far as any one else going to see him I don't know that you will
get anything different than we did. However, if we can get him to
move forward with some research, then traveling to him may be the key
in being able to officially publish anything.
I hope this all makes since.  It all feels like a blur right now but
I intend to get back to pursuing this and keeping you posted.
Blessings,
Jennifer

Hi everyone.  I have not written in a long time, but always read the
posts.  Just kind of in my own world lately.  I have a question.  I
was doing some research online and was wondering if anyone has heard
of or had any experience with the Miami Brain Institute.  Also....any
one have any recent updates regarding Dr. Marsh?  I plan to see him
but am waiting for Justin's 24 hour eeg results to come back and he
is awaiting an appointment for a 3T MRI.

Thanks,
Becky

I have pasted a poem below, I can't read it without crying, but I
love the message and think it is worth the read.


THE BRAVE LITTLE SOUL

Not too long ago in Heaven, there was a little soul who took wonder
in observing the world. He especially enjoyed the love he saw there
and often expressed this joy with God. One day however, the little
soul was sad, for on this day he saw suffering in the world. He
approached God and sadly asked, "Why do bad things happen, why is
there suffering in the world?"

God paused for a moment and replied, Little Soul, do not be sad, for
the suffering you see, unlocks the love in people's hearts". The
little soul was confused. "What do you mean", he asked. God replied.
Have you not noticed the goodness and love that is the offspring of
that suffering? Look at how people come together, drop their
differences, and show their love and compassion for those who suffer.
All their other motivations disappear and they become motivated by
love alone.

The little soul began to understand and listen attentively as God
continued, "The suffering soul unlocks the love in people's hearts
much like the sun and rain unlock the flower within the seed. I
created everyone with endless love in their heart, but unfortunately,
most people keep it locked up and hardly share with anyone. They are
afraid to let their love shine freely, because they are afraid of
being hurt. But a suffering soul unlocks that love. I tell you this-
it is the greatest miracle of all. Many souls have bravely chosen to
go into the world and suffer-to unlock this love-to create this
miracle-for the good of all humanity."

Just then, the little soul got a wonderful idea and can hardly
contain himself. With his wings fluttering, bouncing up and down, the
little soul excitedly replied, I am brave: let me go! I would like to
go into this world and suffer so that I can unlock the goodness and
love in people's hearts! I want to create that miracle!"

God smiled and said, you are a brave soul, I know and thus I will
grant your request but even though you are very brave you will not be
able to do this alone. I have known since the beginning of time that
you would ask and so I have carefully selected many souls to care for
you on your journey. Those souls will help you create your miracle:
however, they will also share in your suffering. Two of those souls
are most special and will care for you, help you and suffer along
with you, far beyond the others. They have already chosen a name for
you.

God and the brave little soul shared a smile and then embraced. In
parting, God said, "Do not forget little soul that I will be with you
always. Although you have agreed to bear this pain, you will do so
through my strength. And if the time should come when you feel that
you have suffered enough, just say the word, think the thought, and
you will be healed."

Thus, at that moment, the brave little soul was born into the world,
and through his suffering and God's strength he unlocked the goodness
and love in people's hearts. For so many people dropped their
differences and came together to show their love. Priorities became
properly aligned. People gave from their hearts. Those that were
always too busy found time. Many began new spiritual journeys-some
regained lost faith-many came back to God. Parents hugged their kids
tighter. Friends and family grew closer. Old friends got together and
new friendships were made. Distant family reunited, and every family
spent more time together. Everyone prayed. Peace and love reigned.
Lives were changed forever. It was good. The world was a better
place. The miracle had happened. God was pleased.

Believe in God's promises….

Hi Denise,

Thank you for sharing that with us and thank you so much for thinking
of Rylie and sending her a message.  We're going to a memorial
service in London, Ontario next week.  I wonder how many families
will be there.  It's too sad to think about, really.

I just wanted to let you know that I appreciated you thinking of
Rylie.  That's so wonderful.  Please take care and I should be
getting back to work.  God bless.

Laura




--- In MPEIparentsupportgroup@yahoogroups.com, "whitley.denise"
<whitley.denise@...> wrote:
>
> Hi Everyone
>
> I wanted to share with you all that Debs and I had a really hard
day
> emotionally today, but at the same time a moving experience. Claire
> House had its 'Memory day'today. It was a lovely service but I was
> crying before it even started. They had some lovely music,
meaningful
> poems and a chaplain reading some things from the bible. They then
> read out all the childrens names that had died there in the 10yrs
> since it has been opened. 149 children have become angels there.
Harry
> died in April and 8 children have died since then,...its just so
sad.
> Some families had lost two children to the same condition. I was
> talking to one woman whose son died last year and her daughter is
> getting close to the end now. How an earth would you cope with
that?
> Im so tired now. Deb and i didnt make it to the end of the service,
i
> walked outside and didnt realise until i got to the door that deb
had
> stood up at the same time. We had a another cry and a hug. We then
> filled in some cards attached to balloons and let them go. I let
one
> go for Rylie and the other children as well.
>
> Nickie , im glad you have made your decision and are happy with it.
xx
>
> Denisexx
>

In my dreams you are alive and well,
Precious child, precious child
In my mind I see you clear as a bell,
Precious child precious child
In my sole there is a hole that can never be filled
But in my heart there is hope, cos you are with me still
In my heart you live on, always there and never gone
Precious child you left to soon
Though it may be true that we're apart,
you will live forever in my heart
In my plans I was the first to leave
Precious child precious child
But in this world I was left here to grieve
Precious child precious child
In my sole there is a hole that can never be filled
But in my heart there is hope cos you are with me still
God knows I want to hold you
See you, touch you
And maybe there's a heaven
And someday I will again
Please know you are not forgotten until then

Words and music by Karen Taylor-Good

When you feel a gentle breeze caress you when you sigh
It's a hug sent from heaven from a loved one way up high.
If a soft and tender raindrop lands upon your nose
They've added a small kiss as fragile as a rose

If a song you hear fills you with a feeling of sweet love
It's a jug sent from heaven from someone special up above
If you awaken in the morning to a bluebirds chirping song
Its music sent from heaven to cheer you all day long

If tiny little snowflakes land upon your face
It's a hug sent from heaven trimmed with angel lace
So keep the joy in your heart if you're lonely my dear friend
Hugs that are sent from heaven, a broken heart will mend


by Charlotte Anselmo

Hi Everyone

I wanted to share with you all that Debs and I had a really hard day
emotionally today, but at the same time a moving experience. Claire
House had its 'Memory day'today. It was a lovely service but I was
crying before it even started. They had some lovely music, meaningful
poems and a chaplain reading some things from the bible. They then
read out all the childrens names that had died there in the 10yrs
since it has been opened. 149 children have become angels there. Harry
died in April and 8 children have died since then,...its just so sad.
Some families had lost two children to the same condition. I was
talking to one woman whose son died last year and her daughter is
getting close to the end now. How an earth would you cope with that?
Im so tired now. Deb and i didnt make it to the end of the service, i
walked outside and didnt realise until i got to the door that deb had
stood up at the same time. We had a another cry and a hug. We then
filled in some cards attached to balloons and let them go. I let one
go for Rylie and the other children as well.

Nickie , im glad you have made your decision and are happy with it. xx

Denisexx

Hi Nikki, congrats on being chosen for the Apprentice.  I agree with
the others, it sounds like you know you have made the right decision
to look after your family first.  I don't work right now, first by
choice, but am thinking of going back to work part time in a couple
of years.  Maybe the opportunity to apply for the Apprentice will
come up again, if you can't do it at the moment, maybe they will
consider you again if the show is still around, just a thought.  What
type of work do you do?

Take care,

Satnam



--- In MPEIparentsupportgroup@yahoogroups.com, nikkietat@... wrote:
>
> Hi everyone,
>
> Hope all's well with you and your angels. I know I've not been
around much lately, but being pregnant and back at work is taking its
toll and I seem to have no time to myself.
>
> Anyway, after a bit of advice or just some thoughts really. You
might remember I auditioned for the UK TV show The Apprentice. I said
I was unsuccessful, but that wasn't strictly true - I was told to say
that. I actually have got a place, and filming starts next weekend.
>
> I have made the decision not to accept the place. The producers do
not know I am pregnant, so I will tell them. I just need an outside
opinion about whether I am making the right decision.
>
> Filming takes up to ten weeks, during which time I am allowed one
five minute call home per week. I don't think I can leave the girls
for so long. We get a nominal fee, but it won't cover costs of not
working. Childcare may be an issue, and I am unlikely to be allowed
all that time off work. Plus, I will be semi-famous which I really
don't think I want. I was in London on Monday filming arrivals shots
and an interview, and it was very clear that they want me portrayed
as a ruthless, ambitious woman who will walk all over anyone who gets
in her way - not me at all. I am worried I will never be taken
seriously again, and where would that leave us? Plus, I'm pregnant,
and will soon be showing. Can I really risk this baby?
>
> But, if I don't do it, will I always regret it? If I won, I would
get a job worth £100,000 a year. But that also means working long
hard hours - at what cost to my family? At the moment, I work 3 and a
half days a week and get paid reasonably well for it. For me, being
with my family is more important, but I am worried that I will really
regret this one big chance if I say no.
>
> I know this has nothing to do with this group, but I just all you
ladies and would like to hear any objective thoughts before I make
this huge decision.
>
> Nikkie x
> Sent using BlackBerry® from Orange
>

Hi Nikkie
Wow what a hard choice. It sounds like you know you cant really do it
due to the children and being pregnant. I know i would never work such
long hours - whether i was paid 100,000 or not. I work to live and not
the other way round, dont get me wrong i enjoy my job and the time it
gives me to be me, but i love the time with the kids and hubby as
well. The other thing that Harry taught us was that money isnt
everything. We have been really broke for the past year cos i havent
worked, which we have never ever had before. But i would do it all
again for the time it gave me with Harry and the kids.

However, i do know we are all different and mine is only an opinion.
If you are career focussed i think you need to think seriously because
it could get you where you want to be. Good luck and let us know what
you decide.

xx



--- In MPEIparentsupportgroup@yahoogroups.com, nikkietat@... wrote:
>
> Hi everyone,
>
> Hope all's well with you and your angels. I know I've not been
around much lately, but being pregnant and back at work is taking its
toll and I seem to have no time to myself.
>
> Anyway, after a bit of advice or just some thoughts really. You
might remember I auditioned for the UK TV show The Apprentice. I said
I was unsuccessful, but that wasn't strictly true - I was told to say
that. I actually have got a place, and filming starts next weekend.
>
> I have made the decision not to accept the place. The producers do
not know I am pregnant, so I will tell them. I just need an outside
opinion about whether I am making the right decision.
>
> Filming takes up to ten weeks, during which time I am allowed one
five minute call home per week. I don't think I can leave the girls
for so long. We get a nominal fee, but it won't cover costs of not
working. Childcare may be an issue, and I am unlikely to be allowed
all that time off work. Plus, I will be semi-famous which I really
don't think I want. I was in London on Monday filming arrivals shots
and an interview, and it was very clear that they want me portrayed as
a ruthless, ambitious woman who will walk all over anyone who gets in
her way - not me at all. I am worried I will never be taken seriously
again, and where would that leave us? Plus, I'm pregnant, and will
soon be showing. Can I really risk this baby?
>
> But, if I don't do it, will I always regret it? If I won, I would
get a job worth £100,000 a year. But that also means working long hard
hours - at what cost to my family? At the moment, I work 3 and a half
days a week and get paid reasonably well for it. For me, being with my
family is more important, but I am worried that I will really regret
this one big chance if I say no.
>
> I know this has nothing to do with this group, but I just all you
ladies and would like to hear any objective thoughts before I make
this huge decision.
>
> Nikkie x
> Sent using BlackBerry® from Orange
>

Hi everyone,

Hope all's well with you and your angels. I know I've not been around much
lately, but being pregnant and back at work is taking its toll and I seem to
have no time to myself.

Anyway, after a bit of advice or just some thoughts really. You might remember I
auditioned for the UK TV show The Apprentice. I said I was unsuccessful, but
that wasn't strictly true - I was told to say that. I actually have got a place,
and filming starts next weekend.

I have made the decision not to accept the place. The producers do not know I am
pregnant, so I will tell them. I just need an outside opinion about whether I am
making the right decision.

Filming takes up to ten weeks, during which time I am allowed one five minute
call home per week. I don't think I can leave the girls for so long. We get a
nominal fee, but it won't cover costs of not working. Childcare may be an issue,
and I am unlikely to be allowed all that time off work. Plus, I will be
semi-famous which I really don't think I want. I was in London on Monday filming
arrivals shots and an interview, and it was very clear that they want me
portrayed as a ruthless, ambitious woman who will walk all over anyone who gets
in her way - not me at all. I am worried I will never be taken seriously again,
and where would that leave us? Plus, I'm pregnant, and will soon be showing. Can
I really risk this baby?

But, if I don't do it, will I always regret it? If I won, I would get a job
worth £100,000 a year. But that also means working long hard hours - at what
cost to my family? At the moment, I work 3 and a half days a week and get paid
reasonably well for it. For me, being with my family is more important, but I am
worried that I will really regret this one big chance if I say no.

I know this has nothing to do with this group, but I just all you ladies and
would like to hear any objective thoughts before I make this huge decision.

Nikkie x
Sent using BlackBerry® from Orange

Hi everyone,

Hope all's well with you and your angels. I know I've not been around much
lately, but being pregnant and back at work is taking its toll and I seem to
have no time to myself.

Anyway, after a bit of advice or just some thoughts really. You might remember I
auditioned for the UK TV show The Apprentice. I said I was unsuccessful, but
that wasn't strictly true - I was told to say that. I actually have got a place,
and filming starts next weekend.

I have made the decision not to accept the place. The producers do not know I am
pregnant, so I will tell them. I just need an outside opinion about whether I am
making the right decision.

Filming takes up to ten weeks, during which time I am allowed one five minute
call home per week. I don't think I can leave the girls for so long. We get a
nominal fee, but it won't cover costs of not working. Childcare may be an issue,
and I am unlikely to be allowed all that time off work. Plus, I will be
semi-famous which I really don't think I want. I was in London on Monday filming
arrivals shots and an interview, and it was very clear that they want me
portrayed as a ruthless, ambitious woman who will walk all over anyone who gets
in her way - not me at all. I am worried I will never be taken seriously again,
and where would that leave us? Plus, I'm pregnant, and will soon be showing. Can
I really risk this baby?

But, if I don't do it, will I always regret it? If I won, I would get a job
worth £100,000 a year. But that also means working long hard hours - at what
cost to my family? At the moment, I work 3 and a half days a week and get paid
reasonably well for it. For me, being with my family is more important, but I am
worried that I will really regret this one big chance if I say no.

I know this has nothing to do with this group, but I just all you ladies and
would like to hear any objective thoughts before I make this huge decision.

Nikkie x
Sent using BlackBerry® from Orange

Hi everyone,

Hope all's well with you and your angels. I know I've not been around much
lately, but being pregnant and back at work is taking its toll and I seem to
have no time to myself.

Anyway, after a bit of advice or just some thoughts really. You might remember I
auditioned for the UK TV show The Apprentice. I said I was unsuccessful, but
that wasn't strictly true - I was told to say that. I actually have got a place,
and filming starts next weekend.

I have made the decision not to accept the place. The producers do not know I am
pregnant, so I will tell them. I just need an outside opinion about whether I am
making the right decision.

Filming takes up to ten weeks, during which time I am allowed one five minute
call home per week. I don't think I can leave the girls for so long. We get a
nominal fee, but it won't cover costs of not working. Childcare may be an issue,
and I am unlikely to be allowed all that time off work. Plus, I will be
semi-famous which I really don't think I want. I was in London on Monday filming
arrivals shots and an interview, and it was very clear that they want me
portrayed as a ruthless, ambitious woman who will walk all over anyone who gets
in her way - not me at all. I am worried I will never be taken seriously again,
and where would that leave us? Plus, I'm pregnant, and will soon be showing. Can
I really risk this baby?

But, if I don't do it, will I always regret it? If I won, I would get a job
worth £100,000 a year. But that also means working long hard hours - at what
cost to my family? At the moment, I work 3 and a half days a week and get paid
reasonably well for it. For me, being with my family is more important, but I am
worried that I will really regret this one big chance if I say no.

I know this has nothing to do with this group, but I just all you ladies and
would like to hear any objective thoughts before I make this huge decision.

Nikkie x
Sent using BlackBerry® from Orange

Rachel,

I am so glad to hear that you and Micah are home.  I have been
praying for you and your family and wondering how you all are doing.
Sounds like things are still crazy.  I will continue to pray for
Micahs healing and weight gain.  I pray that you will be able to find
the best home for your family.  I pray for you and your husband that
you get the rest, help and time together that you need.  I pray that
you will find the help that you need and someone that will be a
blessing to your family and your home. My heart is so heavy picturing
your precious Micah and all the added meds and equipment.  These
little ones are so angelic and their fighting is really miraculous.
I marvel everyday at my precious Micah.  I pray you can find peace
and rest and joy in the midst of such trial.  You are a beautiful
woman.
Love and prayers to all the other families too.
We have been gone all summer and still trying to get settled. I have
not done a good job of staying in touch but have tryed to read the
other posts.  I will try and send more info soon about our visit with
Dr. Marsh. I am waiting to hear from him.

Jennifer and Micah
--- In MPEIparentsupportgroup@yahoogroups.com, "kiterain"
<kiterain@...> wrote:
>
> We are home and doing alright at the moment.
> Micah has a hospital bed, an oxygen concentrator, a nebulizer, a
> feeding pump, and IV meds that he is getting around the clock
still.
> We came home hoping that Micah could gain enough weight so that the
> surgeon would be interested in placing his feeding tube. As it is
He
> has an Ng placed in his duodenum. We got home on Aug 18th and life
is
> still crazy here with all the things we have to get done in a day.
I
> am still trying to finish work at the leather shop for the summer,
> crazy. We finally qualified for in home help for 40+ more hours a
> week depending on what we need. We are still waiting for our Nanny
to
> go through the proper training tomorrow. My Mom left Alaska
yesturday
> and My cousin Bethel has been a great help to us while we are
> tweeking things here t home.
> Micah also had a really high Dilantin level of 60 when they took
him
> down off of the Valproic Acid. The valpo didn't seem to help at
all.
> This last friday we were back in the ER trying to get Micah's Ng
> replaced. It took 6 hours for the nurses to get it in the right
place
> and actually listen to what I had to say! We also found that Micah
> had possible pneumonia and by Sunday I was asking the home health
> nurses to bring in some antibiotics to help him work through it
early
> this time. We had to put him on his oxygen, and keep him pretty
> medicated so that he has had time to heal without hurting most of
the
> time.
> We are also going to move as soon as we get accepted into a new
> appartment building, as is, in this one there are people who smoke
> outside the only door in and out that are not supposed to, and we
> live upstairs with a killer view, but we have been hauling
everything
> up and it may not be the best thing for our family and Moo. A
change
> would be better for both of the boys, as we have Isaac in our room
> right now because of the screaming Micah has doing during the
night!
> It made for a frumpy mommy during the day and his Nana was gettng
> frazzled .
> The good news is that we are home. Isaac has just learned to crawl,
> and I have a real bed to sleep in!
> Thanks for all of your prayers, it has been a rough go this summer,
> and hopefully things will get better as time goes on.
> I did want to say that I have never heard of dystonia and thought
it
> remarkable as something that we have probably been medicating Micah
> for seizuring while he has been having the dysonia... I will
mention
> this to our doctors. Thanks for bringing it up, I just shook my
head
> as I read not really knowing what to think about this new little
bit
> of info. Like I said, very remarkable! This has never ever been
> mentioned!!
> Love to all the Kiddoodles! I think about you and pray for you
> everyday!
> Rachel
>