Re: Re: Hello again everyone

[Guest guest]

hey welcome back to oru land its me ellen in aus hugs xxxxxxxxx

>

> Hello ,

>

> I am Crystal mom of 3 and my youngest Eva (10 months) is my little

> charger. I live in Illinois and we use Childerns hospital in

> Wisconsin and they are great!!

> Also welcome back to the main land...lol. My brother is in Virginia

> in the Navy. Are you in Norfolk? I am thinking about going up there

> in Aug to see him with my sister and to see her friend who is also

> in the Navy.

> I hope you get your son into the clinic and they can help him eat

> more.

> Hugs,

> Crystal and Eva (10 month charger)

>

>

>

> >

> > Hi all!

> > This is from Hawaii. I am sorry I have not been around

> > much lately, but it's nice to be back here and see some

> > familiar " faces " !

> >

> > We are now living in sburg, Virginia. My husband is a Drill

> > Sergeant stationed here at Fort Lee. The kids are loving the cold

> > weather (although it is supposed to get up into the 70s today) and

> > got to see snow for the first time. It is nice to be closer to my

> > husband's family so my children get to spend more time with them.

> I

> > am enjoying myself here and I can't wait to travel around a little

> > bit!

> >

> > , our CHaRGEr, is 9 years old, going on 10 next month. He

> is

> > in a fully self-contained classroom where he gets speech, OT and

> > vision/O & M services. He loves his new school, new friends and most

> > of all his new bus and driver! He is slowly making gains, now

> > developmentally at about a 3 year old level. Healthwise, he has

> been

> > seizure free for quite awhile and his main issue right now is

> > eating, or lack thereof. He only eats 5 foods total, mainly

> because

> > of sensory issues. I have heard about the feeding clinic at

> Richmond

> > Children's Hospital and I would LOVE to get him in there. I read

> on

> > their website that they treated a child with CHARGE...is that

> > someone here?? I would LOVE to hear about your experience there.

> It

> > is heartbreaking to see him eating the same thing over and over

> and

> > I am at a loss as to how to fix this.

> >

> > Anyway, I am glad to be back here! If there is anyone in the area,

> I

> > would love to hear from you (I would love to hear from anyone!).

> > Hope everyone is doing well!!

> >

> > Pagan

> > Wife to Rich

> > Mom to Marina 12, 9 (CHaRGE, cerebral palsy, epilepsy),

> > Tabitha 6 and Christian 3

> >

>

>

>

>

>

>

>

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>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>