Re: Lori

[Guest guest]

Hello Lori,

Let me start off by saying l know where you are coming from with your feelings.

I have a 3 year old son with PMG. When my son was born everything was " normal " .

I got to bring home my baby boy that same day he was born. I have a daughter

that is 2 years older than him. That first night home with my son was long. He

didn't sleep, and had trouble nursing. For the first 6 weeks he did not sleep. I

would try breast feeding and he couldn't latch on. I felt as if l didn't know

what l was doing. I tried every bottle on the market and finally found one that

would work. One night out of desperation l laid my son on his tummy beside me on

the bed. I woke up in the morning scared to death. He was sound asleep. That was

the first night he had ever slept. As time went on and he was about 3 months

old, l noticed he wasn't making milestones like my first child did at that age.

I started talking with my doctor. He said don't worry, " you are a new mom " . Then

when my son about 6 moths old l started demanding them to see what's wrong. Then

when my son was 10 months old he had his 1st MRI done at children's Hospital in

Seattle Washington. I at that time was 8 months pregnant with our 3rd child. I

can still remember the day. July 18, 2001. The doctor walked in and told us our

son had PMG and it was severe and to take him home and care for him. He said he

would be severly mentally retarted and there was nothing they could do for us. I

was so heart broken, l couldn't think of any questions to ask the doctor and the

doctor couldn't offer me any answers. He just stated that it was rare and not

much information was known about his condition. My husband and l drove 3 hours

back home crying our eyes out. How could that be! Our only son, our beautiful

baby. To us he looked normal and being a baby still nothing really seemed out of

place. After returning home l was still in shock. Several months went by without

me wanting to know about his condition. I guess part of me felt if i didn't know

then he didn't have. Then the feeling set in. I want to know. I was so lucky to

find this group. The people here are wonderful. They know how " we " feel.

Everyone helps out with advise.

Its been 2 years since we learned about my son's condition. Where l live

information is very limited, almost none. My son Jorden is a happy little man.

He has seizures but so far is undercontrol with medication. He can see and hear

perfect. He cannot sit without support, roll over, crawl, walk, or has head

control, but its getting better. He eats stage 2 pureed baby food out of a

special trainer feeder bottle. He knows his mommy and daddy and sisters and

grandpa's and grandma's. He loves blues clues and match box cars( that's because

he just learned how to hold them). He goes to preschool 2 days a week and he

gets to ride the school bus. We wait outside for his bus to come around the

corner and the biggest smile comes on his face. He knows they are coming for

him.

I have learned that his treatment begins with me. I have to demand. I have

learned demanding gets better results than asking. The quality of care he get is

up to me. Doctor's don't liked to be bugged, they will do just about anything to

get you off their back. I used to sit back and wait for him to call, not no

more. Im calling and calling until l get answers. The internet is a wonderful

place to get information. This group is great.

Today, l look at my son's condition differently than l did back when l first

learned. I have a beautiful son. He is eager to learn and full of love and life.

I have learned to live with what he has. That is known. I will not live with

limiting what he can learn to do. That is the unknown. Everyday he learns

something new. He has come a long way from conception to birth to 3 years old,

he is a fighter and if he can fight the battle so can l. I look at my son and

tell people. My son is a special needs child, but aren't we all. We all have

special little needs his are just a little bigger and sometimes more demanding.

But that's okay that's what mom's and dad's are here for.

I hope you get answers you are looking for. Just don't get caught up in the sad

times and look at the blessing you received in your little girl.

Sorry for being to long. Best wishes to your family and Happy Holidays

Marilyn mom to Jorden 3 pmg, Sierra 5, and 2.

to michael re conductive education

hi michael,been a while since i have checked my messages but i am glad i did

as i saw this one about conductive education.we have been attending

conductive education(8 hours per week) since jack was 13 months old(we

started march 2003)when we started he was only just sitting alone,not weight

bearing,some hypotonia,no crawling.he is now 22 months old talking non stop

and walking holding on to the furniture(or anybody else who has the time to

hold him)jack isnt standing alone yet as he has issues with poor balance, we

are assuming this is a combination of poor vision and mild pmg(which is

still being disputed)and the white matter in his brain being

underdeveloped,now dont get me wrong this may sound like afew issues but if

you met jack you probably wouldnt notice at first that there was any

problem,and this i attribute to the therapy at conductive education,its

totally holistic and very innovative,some of the things they think up to

encourage the children to use their bodies are very cool.

i am assuming that the therapy they use is the same world wide(we live in

new zealand) as all of the conductors are trained at the peto institute in

hungary and are probably trained the same way.the. conductor at the centre

we attend has been here for 10 years and is very knowledgable in the areas

of motor disorders of all kinds.

please feel free to ask any specific questions you would like answered as i

am unsure exactly what you would like to know but i'm sure i can answer any

questions you may have.

look forward to hearing from you or anybody else who would like to know.

vicki mum to michael ,sarah and jack(pmg?)

Re: First Hello!

> >

> >

> >

> >Lori:

> >

> >This is a late response to your message since I just recently located

> >this group. I hope the last few months have given you a lot more

> >information and encouragement. We were recently told that our son,

> >Owen, has pmg and in the first few weeks we were also in a state of

> >shock. I think now I am still in denial a bit but I try to remain

> >positive and I hope you are able to do so as well. We also couldn't

> >tell that there was a problem at first, especially with many other

> >parents telling us that their children didn't hold up their heads at

> >two months. But as time has gone by, our son still hasn't met his

> >milestones and he still has low tone. But boy does he bring joy to

> >every moment of my life!

> >

> >I have asked our doctor for reference materials and if he ever gets

> >them to me I will send them on to you. I also wanted to mention that

> >our neurologist told us that how the brain looks and how it works are

> >two different things. Hopefully that will give you a reason to

> >remain positive.

> >

> >

> >Happy Holidays to you and yours.

> >

> >Trish, mother of Owen (4 1/2 months with pmg)

> >

> >

> > > Hello Everyone!!!

> > >

> > > I am sitting at my computer, tears streaming down my face, and I am

> > > extremely grateful for the fact that God has directed me to this

> > > sight and support group! After reading the new postings from two

> >new

> > > members, I too have decided to introduce myself and my family.

> > >

> > > My husband (Glenn) and I (Lori) have four beautiful children--

> >Jareck

> > > (6), Jaden (4), Skyler (2) and Ashlynn (16 days old). We live in

> >the

> > > State of Utah, located in the USA. Yesterday, my husband and I

> > > learned that our beautiful two-week-old daughter Ashlynn has been

> > > diagnosed with a severe case of PMG. We feel incredibly lucky to

> > > have learned of her condition at such an early stage of life, but

> >at

> > > the sametime, it doesn't alleviate the pain, confusion, or

> > > frustration one feels when learning such news!!! Worst of all, as

> > > I'm sure most of you can relate, the doctor could tell us very

> >little

> > > about what the future holds or what we can expect!

> > >

> > > Observing Ashlynn at this time, no one would ever guess the

> > > difficulty of the path of life which may lie ahead. She shows no

> > > outwardly signs that anything is wrong and she appears to be

> > > thriving! She was released from the hospital with basically a

> >clean

> > > bill of health. Her sight and hearing seem to be normal...She does

> > > not exhibit difficulties eating...She is capable of moving her arms

> > > and legs...etc., etc., etc.. In NO WAY were we prepared for the

> >news

> > > that supposedly her brain is not functioning in a normal manner,

> >and

> > > to top it all off, that her disorder lies on the SEVERE end of the

> > > spectrum! Is this in accordance with what any of you have

> > > experienced?!?!? When your sweet children were newborns, were

> >there

> > > any indications that they may not lead a normal life?!?!? Are we

> > > living in a world of denial if we try to convince ourselves that

> > > becuase all appears to be normal now, that perhaps all will

> >continue

> > > to be normal?!?!?

> > >

> > > PLEASE!!! We plead with you! We are anxious to hear your

> >stories!

> > > As I am sure most of you have experienced, we are SCARED of the

> > > unknown, and are grasping to learn all we can!!! I feel as though

> >my

> > > emotions are one giant whirlwind! One moment, I am in a state of

> > > disbelief--I have no outward reason to believe that my daughter

> >will

> > > experience any difficulties; on the other hand, I have seen the MRI

> > > images and there is no doubt that something is indeed wrong!

> > >

> > > Can anyone tell us if there is any literature, books, anything to

> > > help us better understand what PMG is all about? What are some of

> > > the symptoms we can watch for? What are some of the developmental

> > > difficulties which we can expect??? At the moment, we feel as

> >though

> > > our most valuable resource are people like you, who can relay first

> > > hand some of the difficulties and experiences which you have

> > > encountered. At the current moment we are CLUELESS!!! We are open

> > > to any advice and suggestions that anyone has to offer!!! Most

> > > importantly we are interested in you and your stories!!!

> > >

> > > Sorry for unloading! Bottom line--we are SCARED and are not really

> > > sure where to turn! We recognize that in reality, only time will

> > > answer most of our questions, but to be able to converse with

> >others

> > > who have been in a similar situation is a great comfort. We hope

> >to

> > > hear from some of you soon!!!

> > >

> > > Sincerely,

> > > Ashlynn's Family

> >

> >

> >

> > _____

> >

> >