RE: Polymicrogyria (Never Give Up)

[Guest guest]

I have just watched your youtube link, i am sitting at my desk crying tears of

happiness.  My grandson Chuck is 14 months and has unilateral PMG, hemiplegia

and CP. He has just started commando crawling with his right arm, his left arm &

leg are useless but we are trying to get them moving. Just to see your little

boy running around gives us hope, that maybe one day chuck can play football as

well. How is your son with talking? We are just about to start speech therapy

here, at the moment chuck doesnt talk just makes some sounds to let us know that

he wants our attention. What age did your won start walking?  

Deb Hedley

Ph: 03 93489469 W

0407233831

________________________________

To: polymicrogyria

Sent: Thursday, 6 October 2011 2:11 PM

Subject: Polymicrogyria (Never Give Up)

 

Hi Everyone,

I do not typically post to this group, however, I do read what others write.

My youngest son has bilateral perisylvian polymicrogyria. We did not

get the official diagnosis until he was 2 ½ years old from Dr. Dobyns, whom

we were fortunate to meet at an FCM Convention back in 2009. Anyways, when

he was an infant the Dr.’s told us that he would never walk, talk, have

severe learning/cognitive impairments, and would require a feeding tube at

some point. is a blessing and continues to mystify the Dr.’s with

progress.

Below is a link that I put together of him, that I hope will give hope to

families who are walking a similar journey to us:

Koyshman

Mom to Lara 9 yrs, Ethan (ASD) 7 yrs, 4 yrs (BPP)

[Guest guest]

Allisson, Very touching, marvellous and full of hope, to all of us. is

really nice and sweet, and I`m sure, he'll beimproving every day! Thanks for

sharing, I cried while seeing, only parentsand God know how our hearts feel

about our loved kids. God bless him and all the familly.maria CC:

polymicrogyria

To: polymicrogyria

From: cinnamonflower@...

Date: Thu, 6 Oct 2011 21:44:36 -0400

Subject: Re: Polymicrogyria (Never Give Up)

I really enjoyed the video too

Thank you for sharing it with us.

-Barbi

-sent via mindwaves

On Oct 6, 2011, at 4:53 PM, Frances McDermott

wrote:

> Watched your video and loved it. Our Grandson's Dr. also painted a very grim

story when he was first dig. He is 11 now and doing great. Thanks for posting

the video.

>

>

> To: " polymicrogyria " <polymicrogyria >

> Sent: Thursday, October 6, 2011 11:55 AM

> Subject: Re: Polymicrogyria (Never Give Up)

>

>

> Thank you so much. Even my husband got a little misty when he watched. :-)

Keep on trucking !

>

> “I am learning all the time. The tombstone will be my diploma.”

> — Eartha Kitt

>

>

>

> > Hi Everyone,

> >

> > I do not typically post to this group, however, I do read what others write.

> > My youngest son has bilateral perisylvian polymicrogyria. We did not

> > get the official diagnosis until he was 2 ½ years old from Dr. Dobyns, whom

> > we were fortunate to meet at an FCM Convention back in 2009. Anyways, when

> > he was an infant the Dr.’s told us that he would never walk, talk, have

> > severe learning/cognitive impairments, and would require a feeding tube at

> > some point. is a blessing and continues to mystify the Dr.’s with

> > progress.

> >

> > Below is a link that I put together of him, that I hope will give hope to

> > families who are walking a similar journey to us:

> >

> >

> >

> > Koyshman

> >

> > Mom to Lara 9 yrs, Ethan (ASD) 7 yrs, 4 yrs (BPP)

> >

> >

[Guest guest]

I would love it if you shared the video!

>

> ,

>  

> Would you mind if I put this link to your video on my blog?  I loved it! 

is so cute and kind of reminds me of our boy .  Thanks.

>  

> Stacey

>

> http://lifeonmysterylane.blogspot.com/

>

>

> To: polymicrogyria

> Sent: Wednesday, October 5, 2011 8:11 PM

> Subject: Polymicrogyria (Never Give Up)

>

>

>  

> Hi Everyone,

>

> I do not typically post to this group, however, I do read what others write.

> My youngest son has bilateral perisylvian polymicrogyria. We did not

> get the official diagnosis until he was 2 ½ years old from Dr. Dobyns, whom

> we were fortunate to meet at an FCM Convention back in 2009. Anyways, when

> he was an infant the Dr.’s told us that he would never walk, talk, have

> severe learning/cognitive impairments, and would require a feeding tube at

> some point. is a blessing and continues to mystify the Dr.’s with

> progress.

>

> Below is a link that I put together of him, that I hope will give hope to

> families who are walking a similar journey to us:

>

>

>

> Koyshman

>

> Mom to Lara 9 yrs, Ethan (ASD) 7 yrs, 4 yrs (BPP)

>

>

[Guest guest]

Hi ,

Thankyou for sharing your video with me.  I couldn't help but cry a couple

tears of joy and hope.  It has given me hope.  I will never forget it.

Miriam

 

Mother to Wyatt 3 1/2 yrs old visual impairments, cerebral palsy, intractable

seizures, g-tube, totally non-verbal.  Wyatt has a smile that makes

everything better.

________________________________

To: polymicrogyria

Sent: Wednesday, October 5, 2011 8:11 PM

Subject: Polymicrogyria (Never Give Up)

 

Hi Everyone,

I do not typically post to this group, however, I do read what others write.

My youngest son has bilateral perisylvian polymicrogyria. We did not

get the official diagnosis until he was 2 ½ years old from Dr. Dobyns, whom

we were fortunate to meet at an FCM Convention back in 2009. Anyways, when

he was an infant the Dr.’s told us that he would never walk, talk, have

severe learning/cognitive impairments, and would require a feeding tube at

some point. is a blessing and continues to mystify the Dr.’s with

progress.

Below is a link that I put together of him, that I hope will give hope to

families who are walking a similar journey to us:

Koyshman

Mom to Lara 9 yrs, Ethan (ASD) 7 yrs, 4 yrs (BPP)