Hello!

July 6, 2005

Cassey, Welcome to the group. I know how you feel with the " wait and

see " diagnosis. Our son was not diagnosed with polymicrogyra until he

was 2 years old and we are still discovering things about his mental

development. We knew early on that his receptive speech was delayed. So

far he seems to be seizure free. Did the doctors tell you what part of

her brain was affected? 's is in the parietal region on both sides

of the brain. From what I have read on this list and on many others

every child presents differently with disabilities whether they are

mental or physical. has no leg function because of myelomeningecele

(spina bifida or sb), so this too has had an effect on him

developmentally.

Your precious little girl is and will be unique and special in her own

way. is a very loving child whose charm lights up the room when he

enters. He has brightened our world and taught us to enjoy one day at a

time. The lessons of love he has taught his siblings is priceless.

Kaye, mom to Johanan, " " , sb t12 to s?, 2 yrs old, Chiari II, VP

Shunt (1 revision/1 setting change), biparietal polymicrogyra, cath 5x

day, ditropan, occasionally Mirilax; also mom to 6 other wonderful gifts

from the Lord - ages 4 to 15, wife to super husband Farrel.

Hello!

Hello my name is Cassey Stanger. Our daughter is now 5 months old and

was diagnosed with PMG at about 6 weeks. She is on the lesser end of the

scale as far as severity. They are telling us only about 20% of her

brain has been affected. We haven't seen a lot of symptoms yet just

drooling, and low muscle tone. Can anyone tell us what to watch for and

how your child has been affected with this percentage? Any input at this

point would be wonderful we have just been told to wait and see.

Thanks,

Cassey

---------------------------------

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July 6, 2005

Cassey,

My grandson, Mason, is 6 months old and was diagnosed with PMG at 2

months due to his seizures. So we are in a similar position. I

don't know how severe Mason's case is since they told us they could

not predict the longterm outcome.

I can tell you that Mason seems to be progressing wonderfully. When

he was first diagnosed he was on a feeding tube which we were able to

do away with in a couple of weeks. Although he won't take a bottle

anylonger because he prefers the breast, he started taking solid food

a few weeks ago. He even suprised the feeding specialist that he was

see by how well he took the solid food.

Mason is also begining to hold his head up more and more every day.

He is also turning himself over correctly now. (He was turning

himself over when is was very young but it was because he was arching

so much because of his reflux.)

I think that your daughter as well as my grandson have a great

advantage because they were diagnosed at such a young age and at a

time when we have so many medical advantages. I don't think that

their longterm outcome can be limited at all. Mason is a fighter and

I beleive his fighting attitude, the help that he is getting through

earily intervention, the Children's Hospital of Philadelphia and his

family will give him a future in which he can be or do whatever he

sets out to do.

This support group has been extremely helpful to myself and my

daughter. We have learned things that we would not have known

without this group. The best part is that when you have doubts about

your child's futre you can come on this sight and he how well some of

the older children with PMG are doing and we have even more medical

advances today then they had when they were diagnosed. Mason is a

blessing to our family as I am sure your daughter is to your family.

He is so loving that when you might be having a tough day all you

have to do is take one look at him and he cheers you up.

Good luck I'm sure you will find this group as helpful as I have.

Ginny Farnell

Grandmother to Mason Connerton 6 monts

> Hello my name is Cassey Stanger. Our daughter is now 5 months old

and was diagnosed with PMG at about 6 weeks. She is on the lesser end

of the scale as far as severity. They are telling us only about 20%

of her brain has been affected. We haven't seen a lot of symptoms yet

just drooling, and low muscle tone. Can anyone tell us what to watch

for and how your child has been affected with this percentage? Any

input at this point would be wonderful we have just been told to wait

and see.

> Thanks,

> Cassey

>

> ---------------------------------

> Sell on Yahoo! Auctions - No fees. Bid on great items.

>

July 6, 2005

Thank you so much for your posting. Everything you said is so true. That is what

we are struggling with right now. Because Emma was diagnosed so early everyone

is defining her by her diagnosis. I want so badly for her to be able to just

live as normal of a life as possible and we too will continue to do everything

we can to help her do that. Thanks again for letting us know that others are out

there it helps to know we are not alone.

Thanks,

and Caseey

cy120@... wrote:

My daughter Carly has about 20% of her brain affected also. Her PMG is in

the parietal lobes bilaterally. She had a poor suck reflex and low tone in

the esophagus, high tone in the neck and legs. She aspirated which caused us

to have a nissen and gtube at age 3 mo. From the gagging and retching the

nissen slipped and had to be redone. Then again from the gagging and retching

a hernia developed and the nissen slipped again and had to be repaired.

Medically she was pretty fragile the first 18 mo. She had breathing problems

and

pneumonia a lot. She never crawled, she scooted on her butt around the

house, then started to walk at age 28 mo. She tends to speak her own language.

Some things we can understand but most of the time we just guess. I wish I

would have started sign language earlier. She does use a few signs, but if I

would have started from the beginning she would really know the stuff and use

it. She tends to understand everything we say, but her expressive language

is delayed and might stay that way. It is a wait and see game and it sucks.

She still has her gtube, but we are working on eating and she is making

progress. Early intervention services were key for her, the only thing I

regret

was not having special instruction for sign language and not getting her a

communication board.

Stimulate that brain as much as possible. we never let her go without

stimulation. We painted her walls bright yellow, played music constantly

(even while asleep), got every toy that was made, and brought her to new places

at least once a week. Carly was dx at one year of age and the only thing we

were told was therapy and constant brain stimulation. I truly feel that

Carly is reaching her potential considering her malformation. Never give up

hope

that the next thing you try might be the thing that helps. My philosophy

was: " Well, while I am waiting to see what she is going to be capable of, I

guess I will introduce her to the world and let her find her place. "

These kids are the most remarkable of all human kind. They do not see

the world as an obstacle unless we tell them it is. We have never told Carly

she can't, we have found a way to help her do it. We have never put her in

a self contained environment, we have included her in typical settings and

made her adapt. We have never handed her anything on a silver platter because

the world won't do it for her. Her life will be hard, but it will be much

harder if we teach her to use excuses and the words " I can't " .

You will go through ups and downs. Some days you will be so tired

because you stayed up reading everything you could find on PMG. Some days you

will be so angry because everyone else has this fairy tale life, and you

struggle not to cry yourself through the day. BUT!!! One day you will wake

up

and realize what a gift you have. You will finally get how through all of the

**** you are so lucky to have got the chance to appreciated life's little

things. All the things that those fairytale people will never get. You will

know that your story doesn't just end with " and they lived happily ever after "

it ends with " and they lived, they really lived. " I know you just wanted to

know about how Carly developed and what to expect, but I wanted to share

with you more than development of our kids. You need to know the development

of

you. We get so caught up in what PMG is and how it will effect our kids

that we forget that if effects us. Take care of yourself and know that you are

your child's best advocate. You know her better than any doctor, therapist or

teacher. They can tell you about your child's dx, but only you can tell

them about your child. Our kids should not be defined by PMG, I think that

Carly defines PMG. She puts a face and spirit with three letters that at one

time devastated my life.

Keep up with this list. Even though I don't post very often, just

knowing that we are not alone gets me through the day. No one will understand

you

better than the people here. We are honest and seasoned PMGers. There are

even some adults who have PMG on this list, which gave me the most comfort.

Anytime you need some advice or a sounding board we are here.

Christy

" Our life might not be the party we planned on, but as long as we are here

we might as well dance. " I stole this from one list I am on and since I read

it every morning Carly and I dance in our pajamas to Otis Redding.

July 6, 2005

hello cassey,

my name is velma i am the proud mom of tori she is 8 years old just dx at 5

with pmg her whole brain is affected she started seizures at 5 my daughter

drools alot can not talk but belive me she can get her point across tori is very

delayed in school and everyday type but she does her very best and we are

impressed how she bets the odds all the time my daughter is going through some

rough stuff right now we go to a new dr next tuesday but she just smiles because

theese speacil angles that we are blessed to have are the bravest kids i know

good luck

velma and tori,pmg

Cassey Stanger wrote:

Thanks for replying this group has been wonderful in just the few messages I

have received. I have a couple of questions for you if you don't mind. Do you

know how much of Mason's brain is affected? When did you start seeing seizure

activity? I would appreciate your response.

Thanks,

Cassey

mason_mom_mom wrote: