Re: 3 week old girl with right side unilateral PMG in frontal

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It was explained to us CP is an umbrella term for any brain malformation/damage

that causes motor delay or motor difficulty. So no PMG doesn't mean CP or

vice-versa.

polymicrogyria on Tuesday, March 20, 2012 at 7:06 PM -0700

wrote:

>*I agree. Even though the average is greater for those who will be

>diagnosed with CP, it is not an absolute by any means.*

>*

>*

>

>

>> **

>>

>>

>>

>>

>> Our son is now 7, and he has bilateral PMG. We have seen some of the best

>> epileptolgists in the US. Not one of them has characterized PMG and CP

>> together. We even had him tested for it. I know many PMG patients have CP

>> or have some of the traits but you can't assume an early childhood brain

>> malformation will cause or be characterized as CP.

>>

>> Does anyone else agree or disagee with this?

>>

>> Thanks

>>

>>

>> Sent from my Verizon Wireless BlackBerry

>>

>> Re: 3 week old girl with right side unilateral

>> PMG in frontal and parietal lobes

>>

>>

>>

>> Just an FYI - every child with PMG has CP. CP is simply an umbrella term

>> that means any brain injury / damage that occurs before, during or within

>> te first year of life. Had a neurologist finally explain that to me!

>>

>>

>>

>> Sent from my iPhone

>>

>> On Mar 20, 2012, at 8:55 PM, and Kent

>> wrote:

>>

>> > Our story is similar to Diane's, in fact Diane and I have had one on one

>> > emails. Our daughter has the same condition as Diane's without the

>> > diagnosis of CP. She will be 9 this month and is thriving in a school

>> > for children with learning differences. I second Diane, therapy can do

>> > wonders - sometimes big leaps, other times, incremental - but every gain

>> > made will help your child live to their fullest potential. Feel free to

>> > email individually if you want.

>> >

>> > Oh - and by the way, we've all been where you are now - the overwhelming

>> > feelings and questions that come with the new diagnosis. It will get

>> > better, I promise. In the meanwhile, I want to share a story someone

>> > forwarded to me recently...I thought you would appreciate it as it is

>> > from one parent to another whose child is newly diagnosed.

>> >

>> > Best,

>> >

>> >

>> > /http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club//

>> > //

>> > /My dear friend,/

>> > /I am so sorry for your pain./

>> > /Don't worry; no one else sees it, I promise. To the rest of the world,

>> > you're fine. But when you've been there, you can't miss it./

>> > /I see it in your eyes. That awful, combustible mixture of

>> > heart-wrenching pain and abject fear. God, I remember the fear./

>> > /I see it in the weight of that invisible cloak that you wear. I

>> > remember the coarseness of its fabric on my skin. Like raw wool in the

>> > middle of the desert. You see, it was mine for a time./

>> > /I never would have wanted to pass it on to you, my love. I remember so

>> > well suffocating under the weight of it, struggling for breath, fighting

>> > to throw it off while wrapping myself in its awful warmth, clutching its

>> > worn edges for dear life./

>> > /I know that it feels like it's permanent, fixed. But one day down the

>> > line you will wake up and find that you've left it next to the bed.

>> > Eventually, you'll hang it in the closet. You'll visit it now and then.

>> > You'll try it on for size. You'll run your fingers over the fabric and

>> > remember when you lived in it, when it was constant, when you couldn't

>> > take it off and leave it behind. But soon days will go by before you

>> > wear it again, then weeks, then months./

>> > /I know you are staring down what looks to be an impossibly steep

>> > learning curve. I know it looks like an immovable mountain. It is not. I

>> > know you don't believe me, but step by step you will climb until

>> > suddenly, without warning, you will look down. You will see how far

>> > you've come. You'll breathe. I promise. You might even be able to take

>> > in the view./

>> > /You will doubt yourself. You won't trust your instincts right away. You

>> > will be afraid that you don't have the capacity to be what your

>> > baby will need you to be. Worse, you'll think that you don't even know

>> > what she needs you to be. You do. I promise. You will./

>> > /When you became a mother, you held that tiny baby girl in your arms and

>> > in an instant, she filled your heart. You were overwhelmed with love.

>> > The kind of love you never expected. The kind that knocks the wind out

>> > of you. The kind of all encompassing love that you think couldn't

>> > possibly leave room for any other. But it did./

>> > /When your son was born, you looked into those big blue eyes and he

>> > crawled right into your heart. He made room for himself, didn't he? He

>> > carved out a space all his own. Suddenly your heart was just bigger. And

>> > then again when your youngest was born. She made herself right at home

>> > there too./

>> > /That's how it happens. When you need capacity you find it. Your heart

>> > expands. It just does. It's elastic. I promise./

>> > /You are so much stronger than you think you are. Trust me. I know you.

>> > Hell, I am you./

>> > /You will find people in your life who get it and some that don't.

>> > You'll find some that want to get it and some that never will. You'll

>> > find a closeness with people you never thought you had anything in

>> > common with. You'll find comfort and relief with friends who speak your

>> > new language. You'll find your village./

>> > /You'll change. One day you'll notice a shift. You'll realize that

>> > certain words have dropped out of your lexicon. The ones you hadn't ever

>> > thought could be hurtful. //Dude, that's retarded. Never again. You

>> > won't laugh at vulnerability. You'll see the world through a lens of

>> > sensitivity. The people around you will notice. You'll change them too./

>> > /You will learn to ask for help. You'll have to. It won't be easy.

>> > You'll forget sometimes. Life will remind you./

>> > /You will read more than you can process. You'll buy books that you

>> > can't handle reading. You'll feel guilty that they're sitting by the

>> > side of the bed unopened. Take small bites. The information isn't going

>> > anywhere. Let your heart heal. It will. Breathe. You can./

>> > /You will blame yourself. You'll think you missed signs you should have

>> > seen. You'll be convinced that you should have known. That you should

>> > have somehow gotten help earlier. You couldn't have known. Don't let

>> > yourself live there for long./

>> > /You will dig deep and find reserves of energy you never would have

>> > believed you had. You will run on adrenaline and crash into dreamless

>> > sleep. But you will come through it. I swear, you will. You will find a

>> > rhythm./

>> > /You will neglect yourself. You will suddenly realize that you haven't

>> > stopped moving. You've missed the gym. You've taken care of everyone but

>> > you. You will forget how important it is to take care of yourself.

>> > Listen to me. If you hear nothing else, hear this. You MUST take care of

>> > yourself. You are no use to anyone unless you are healthy. I mean that

>> > holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your

>> > children deserve that example./

>> > /A friend will force you to take a walk. You will go outside. You will

>> > look at the sky. Follow the clouds upward. Try to find where they end.

>> > You'll need that. You'll need the air. You'll need to remember how small

>> > we all really are./

>> > /You will question your faith. Or find it. Maybe both./

>> > /You will never, ever take progress for granted. Every milestone met, no

>> > matter what the timing, will be cause for celebration. Every baby step

>> > will be a quantum leap. You will find the people who understand that.

>> > You will revel in their support and love and shared excitement./

>> > /You will encounter people who care for your child in ways that restore

>> > your faith in humanity. You will cherish the teachers and therapists and

>> > caregivers who see past your child's challenges and who truly understand

>> > her strengths. They will feel like family./

>> > /You will examine and re-examine every one of your own insecurities. You

>> > will recognize some of your child's challenges as your own. You will get

>> > to know yourself as you get to know your child. You will look to the

>> > tools you have used to mitigate your own challenges. You will share

>> > them. You will both be better for it./

>> > /You will come to understand that there are gifts in all of this.

>> > Tolerance, compassion, understanding. Precious, life altering gifts./

>> > /You will worry about your other children. You will feel like you're not

>> > giving them enough time. You will find the time. Yes, you will. No,

>> > really. You will. You will discover that the time that means something

>> > to them is not big. It's not a trip to the circus. It doesn't involve

>> > planning. It's free. You will forget the dog and pony shows. Instead,

>> > you will find fifteen minutes before bed. You will close the door. You

>> > will sit on the floor. You'll play Barbies with your daughter or Legos

>> > with your son. You'll talk. You'll listen. You'll listen some more.

>> > You'll start to believe they'll be OK. And they will. You will be a

>> > better parent for all of it./

>> > /You will find the tools that you need. You will take bits and pieces of

>> > different theories and practices. You'll talk to parents and doctors and

>> > therapists. You'll take something from each of them. You'll even find

>> > value in those you don't agree with at all. Sometimes the most. From the

>> > scraps that you gather, you will start to build your child's quilt. A

>> > little of this, a little of that, a lot of love./

>> > /You will speak hesitantly at first, but you'll find your voice. You

>> > will come to see that no one knows your child better than you do. You

>> > will respectfully listen to the experts in each field. You will value

>> > their experience and their knowledge. But you will ultimately remember

>> > that while they are the experts in science, you are the expert in your

>> > child./

>> > /You will think you can't handle it. You will be wrong./

>> > /This is not an easy road, but its rewards are tremendous. It's joys are

>> > the very sweetest of life's nectar. You will drink them in and taste and

>> > smell and feel every last drop of them./

>> > /You will be OK./

>> > /You will help your sweet girl be far better than OK. You will show her

>> > boundless love. She will know that she is accepted and cherished and

>> > celebrated for every last morsel of who she is. She will know that her

>> > Mama's there at every turn. She will believe in herself as you believe

>> > in her. She will astound you. Over and over and over again. She will

>> > teach you far more than you teach her. She will fly./

>> > /You will be OK./

>> > /And I will be here for you. Every step of the way./

>> > /With love,/

>> > /Jess/

>> >

>> >

>> > >

>> > >

>> > > Ben, My daughter has Unilateral PMG on the right side frontal,

>> > > temporal, parietal and occipital so this resulted in left hemiparesis

>> > > cerebral palsy, visual neglect to the left and sensation differences

>> > > and seizures. The doctor said the other day she is in a popular file

>> > > of MRI looks horrible : child high functioning. You can catch us on

>> > > facebook Diane Roy Nisha is doing fine in regular preschool, is in

>> > > regular gymnastics and wears some foot/leg braces and a leftie glove

>> > > some times. We have done LOTS of therapy and I am a peds nurse so I

>> > > have learned to do much of it myself. Try to just enjoy your baby it

>> > > does not change who she is. Embrace the thought of a few more doctors

>> > > and therapy appointments and integrate them with your daily life. And

>> > > get a good medical team including physiatrist.Diane mom Nisha 5

>> > >

>> > >

>> > >

>> > >