Re: and Braden

[Guest guest]

Hello Kandis!! I tried emailing...who knows if I did it correctly!

ha:) I also checked out your blog and it is wonderful! You have a

beautiful family!! I would love to hear more about and his

progress. Our boys do sound very similar. Braden is a year and a few

weeks now and is doing well. He has had his first BOTOX injection and

he is really coming along nicely. He is even beginning to reach out

with his arm/hand to pull up and help him, which is huge! We are

almost there, he learns so fast!! He has great balance and once up he

does super. He isn't walking yet though, takes steps with support.

The PT says he should be in the next 6 months though. He is also

trying to pick stuff up and is batting at things with his left hand.

He is starting to " get " that he has another hand and is putting it

out there more. YEAH! It has been amazing to see him progress from

week to week. There are new things for us to tell the PT, OT and

Developmental Specialist everytime we see them. No seizures yet. We

are going to attend a seizure class though so we know what to do if

it happens and know what to look for.

We are planning on calling Dr. Dobyns and getting his input. I read

in this group that you can send off the MRI, etc. and he will read it

and discuss it with you. Want to see what he thinks and from there

decide if it is worth a trip up there. I think we will though. We are

bound and determined to rewire that brain! The MRI is so scary

sounding and my doc often reminds me we are treating Braden not the

MRI. Honestly, if you read the MRI, you wouldn't put Braden with it.

Just a scary feeling. Wanted to see if I could touch base with you

again, it is comforting to find someone who is going through a

similar situation with similar challenges.

> > >

> > > Hi,

> > >

> > > My son is 5 months old with non-genetic,right side unilateral

> > > polymicrogyria.He has a trach because of idiopathic vocal cord

> > > paralysis and a g-button. I have been reading all the mail that

> > > everyone writes in and I am scared! Since we've had him home

from

> > the

> > > hospital he seems to be doing so much better with tracking,

> > smiling,

> > > rolling over, etc.. I was wondering if anyone out there can

give

> us

> > > more insight as to what to possibly expect over the next couple

> of

> > > years. Currently, we are very proactive in getting therapy for

> him.

> > > We go to a swallowing specialist 1x per week, occupational

> therapy

> > 1x

> > > per week and we have been to 2 physical therapy sessions.

> Recently,

> > > he seems to have a renewed interest in the bottle. Tonight, he

> > drank

> > > his entire meal in one sitting without having to supplement

with

> > the

> > > g-button. Our neurologist doesn't have a lot of answers " until

he

> > > reaches or doesn't reach certain milestones. " When we read

> > > information on the internet it is anything from nothing to your

> > worst

> > > nightmare. It would be greatly appreciated if anyone with a

> similar

> > > situation can e-mail me!

> > >

> > > Thanks in advance,

> > >

> > >

> > >

> >

>

[Guest guest]

Hi Kandis,

My name is and I am from western Canada. My 17 month old son,

has right-sided PMG. I read your and 's postings and

checked out your blog! What a fantastic site and yes, what a

beautiful family!

I couldn't resist and I went through your postings until September

07 and couldn't believe the similarities - I HAD to write! You would

not know what my son has unless you knew what you were looking for

(the PMG has affected the left side of his body and he holds his

left hand almost exactly as holds his right!), but what

struck a chord was the birthdays! My birthday is October 26 and my

son's is September 8, 2006! From what I gather from your site

s's birthday is September 7, 2006? And is yours in October

too? You also described yourself as very particular in keeping your

house and boys clean - ha ha, way too funny, me too, and I, now

having a son, am having a really hard time with that!

Anyways, that's all, I just wanted to have a light-hearted moment!

If you would like to exchange experiences, please feel free to e-

mail me or post on the site.

All the best to you!

p.s./ I also created a little video of 's first steps, we were

SO excited ! If you would like to check it out, this is the link

(copy and paste into your browser): http://www.youtube.com/watch?

v=99F4DpmDRU8

> > > >

> > > > Hi,

> > > >

> > > > My son is 5 months old with non-genetic,right side

unilateral

> > > > polymicrogyria.He has a trach because of idiopathic vocal

cord

> > > > paralysis and a g-button. I have been reading all the mail

that

> > > > everyone writes in and I am scared! Since we've had him home

> from

> > > the

> > > > hospital he seems to be doing so much better with tracking,

> > > smiling,

> > > > rolling over, etc.. I was wondering if anyone out there can

> give

> > us

> > > > more insight as to what to possibly expect over the next

couple

> > of

> > > > years. Currently, we are very proactive in getting therapy

for

> > him.

> > > > We go to a swallowing specialist 1x per week, occupational

> > therapy

> > > 1x

> > > > per week and we have been to 2 physical therapy sessions.

> > Recently,

> > > > he seems to have a renewed interest in the bottle. Tonight,

he

> > > drank

> > > > his entire meal in one sitting without having to supplement

> with

> > > the

> > > > g-button. Our neurologist doesn't have a lot of

answers " until

> he

> > > > reaches or doesn't reach certain milestones. " When we read

> > > > information on the internet it is anything from nothing to

your

> > > worst

> > > > nightmare. It would be greatly appreciated if anyone with a

> > similar

> > > > situation can e-mail me!

> > > >

> > > > Thanks in advance,

> > > >

> > > >

> > > >

> > >

> >

>