Finally a DIAGNOSIS!!!!!!!!!

[Guest guest]

Hello All,

I kmow that I have not posted in a long time, and I want to apologize

for that. I do however read everyones post as often as I can. Hello

to the new memeber swho don't know me as well as the old members who

forgot about me. MY daughter Jalia Camryn who is now almost 10

months has finally been diagnosed with CHaRgE. I have known that

Jalia has had CHARGE ever since June when she was 4 months old and

the coloboma was discovered. I am the one who mentioned it to the

geneticist. I wanted her to consider CHARGE. WEll Jalia's

geneticists is leaving her practice as of 12/31/06, so I guess she

wanted me to have some all mighty answer before she left. BUt she

didn't tell me anything that I didn't already know. So now we

continue on, doing the same EI services and physical therapy that we

have been doing from the start. Jalia is making great progress, and

she is such a joy. She is now able to sit up unassisted for about 1

minute. Our goal was to have her sitiing up by Christmas, and we may

just make it. Feedding is still an issue and we are attending feeding

therapy. She will suck on a binky for a few, and she has taken some

applsauce from a spoon, so I am grateful for that. I will continue

to work with her with spoon feeding. She is fianlly on the growth

chart, only in the 5th percentile, but she's on there. She has her

own growth curve, and is doing nicely.

When my son was born I took so many little milestones for granted,

but Jalia has taught me to cherish the tiniest ones, because they

don't come so easy for everyone. I am quite sure that all of you

know exactly what I am talking about.

I just wanted to say that I may be quiet sometimes, and not respond

to all posts, but you all are always on my mind. I love this group

for the supprt and knowledge that it has given me and my family. I

will try to participate more actively. Well I think that I've

rambled on enough.........Thanks for reading

Lia

Mommy to Jadon 21 months old and

Jalia 9 3/4 months old and two special gifts chosen just

for our family!!!!!!!!

[Guest guest]

I'm glad you got some answers Lia...good luck getting with all the

therapies. She's doing great!

www.chargesyndrome.info

>

> Hello All,

>

> I kmow that I have not posted in a long time, and I want to apologize

> for that. I do however read everyones post as often as I can. Hello

> to the new memeber swho don't know me as well as the old members who

> forgot about me. MY daughter Jalia Camryn who is now almost 10

> months has finally been diagnosed with CHaRgE. I have known that

> Jalia has had CHARGE ever since June when she was 4 months old and

> the coloboma was discovered. I am the one who mentioned it to the

> geneticist. I wanted her to consider CHARGE. WEll Jalia's

> geneticists is leaving her practice as of 12/31/06, so I guess she

> wanted me to have some all mighty answer before she left. BUt she

> didn't tell me anything that I didn't already know. So now we

> continue on, doing the same EI services and physical therapy that we

> have been doing from the start. Jalia is making great progress, and

> she is such a joy. She is now able to sit up unassisted for about 1

> minute. Our goal was to have her sitiing up by Christmas, and we may

> just make it. Feedding is still an issue and we are attending feeding

> therapy. She will suck on a binky for a few, and she has taken some

> applsauce from a spoon, so I am grateful for that. I will continue

> to work with her with spoon feeding. She is fianlly on the growth

> chart, only in the 5th percentile, but she's on there. She has her

> own growth curve, and is doing nicely.

>

> When my son was born I took so many little milestones for granted,

> but Jalia has taught me to cherish the tiniest ones, because they

> don't come so easy for everyone. I am quite sure that all of you

> know exactly what I am talking about.

>

> I just wanted to say that I may be quiet sometimes, and not respond

> to all posts, but you all are always on my mind. I love this group

> for the supprt and knowledge that it has given me and my family. I

> will try to participate more actively. Well I think that I've

> rambled on enough.........Thanks for reading

>

> Lia

> Mommy to Jadon 21 months old and

> Jalia 9 3/4 months old and two special gifts chosen just

> for our family!!!!!!!!

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Hello, that is great news! hope all goes well for you all. My prays are

with you. Have a GREAT x-mas. Raine.

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Finally a DIAGNOSIS!!!!!!!!!

>Date: Tue, 12 Dec 2006 11:37:41 -0000

>

>Hello All,

>

>I kmow that I have not posted in a long time, and I want to apologize

>for that. I do however read everyones post as often as I can. Hello

>to the new memeber swho don't know me as well as the old members who

>forgot about me. MY daughter Jalia Camryn who is now almost 10

>months has finally been diagnosed with CHaRgE. I have known that

>Jalia has had CHARGE ever since June when she was 4 months old and

>the coloboma was discovered. I am the one who mentioned it to the

>geneticist. I wanted her to consider CHARGE. WEll Jalia's

>geneticists is leaving her practice as of 12/31/06, so I guess she

>wanted me to have some all mighty answer before she left. BUt she

>didn't tell me anything that I didn't already know. So now we

>continue on, doing the same EI services and physical therapy that we

>have been doing from the start. Jalia is making great progress, and

>she is such a joy. She is now able to sit up unassisted for about 1

>minute. Our goal was to have her sitiing up by Christmas, and we may

>just make it. Feedding is still an issue and we are attending feeding

>therapy. She will suck on a binky for a few, and she has taken some

>applsauce from a spoon, so I am grateful for that. I will continue

>to work with her with spoon feeding. She is fianlly on the growth

>chart, only in the 5th percentile, but she's on there. She has her

>own growth curve, and is doing nicely.

>

> When my son was born I took so many little milestones for granted,

>but Jalia has taught me to cherish the tiniest ones, because they

>don't come so easy for everyone. I am quite sure that all of you

>know exactly what I am talking about.

>

>I just wanted to say that I may be quiet sometimes, and not respond

>to all posts, but you all are always on my mind. I love this group

>for the supprt and knowledge that it has given me and my family. I

>will try to participate more actively. Well I think that I've

>rambled on enough.........Thanks for reading

>

>Lia

>Mommy to Jadon 21 months old and

> Jalia 9 3/4 months old and two special gifts chosen just

>for our family!!!!!!!!

>

_________________________________________________________________

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[Guest guest]

Lia-

Wonderful to hear your update! The diagnosis didn't change anything you are

doing, but it will make it easier to talk to the professionals in Jalia's

life from now on. No question about what to do and that you know what you

are talking about when it comes to proactive ideas about her care.

Continue the good work and the positive attitude!

Michele W

Aubrie's mom 9 yrs

[Guest guest]

What a lovely update!! Thanks.

pam

>

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>

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>

>

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

[Guest guest]

i second michelles answer there and it also eased ru mind coz then you could

say its charge with no questions asked LOL

>

> What a lovely update!! Thanks.

> pam

>

> On 12/12/06 6:37 AM, " Lia "

<williamsquadx4@...<williamsquadx4%40yahoo.com>>

> wrote:

>

> >

> >

> >

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> >

> >

>

> --

> Pamela J. , M.A., CAGS

> Licensed Educational Psychologist

> Deafblind Program

> Perkins School for the Blind

> 175 N. Beacon St.

> Watertown, MA 02472

>

>