Re: CHRYSTINE'S MOTHER INTRODUCES HERSELF (6 MONTHS, CHARGE)

[Guest guest]

Chrystal,

Welcome! You'll find great things here. Have you gone on to the CHARGE

Foundation webpage? The manual is updated on the Internet. It's great.

And congratulations on the pregnancy too!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Chrystal,

Welcome! You'll find great things here. Have you gone on to the CHARGE

Foundation webpage? The manual is updated on the Internet. It's great.

And congratulations on the pregnancy too!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Chrystal,

Welcome! You'll find great things here. Have you gone on to the CHARGE

Foundation webpage? The manual is updated on the Internet. It's great.

And congratulations on the pregnancy too!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Welcome Chrystal and Chrystine

my name is Lesley and I have a 16 month old daughter called Amelie with

charge,

Bilateral colobomas, profoundly deaf, no semi circular canals, poor

coordination and balance.

Hypotonia very floppy, can only just hold head up for a short time, ASD PDA

Hpertrophic cardiomyopathy, Chronic lung disease due to recurrent

pneumonias, aspiration, reflux Nissen failed, gastrostomy jejunum fed.

facial palsy, failed video fluroscopy,

and most important of all *bloody gorgeous adorable and a little minx!!*

You will find lots of great people and support here, in our charge family.

good luck Lesley x

>

> My name is Chrystal. I am just home from a 4 hour drive to a

> children's hospital where we finally received the answer. She, my

> youngest daughter (Chrystine), has Charge. She has been hospitalized

> 14 times since birth, with my pediatrician convinced that she had a

> metabolic disease. Chrystine left kidney is completely cystic (MCKD)

> and her right has one small cyst, and she has grade 4 reflux in both

> kidneys. She has also had unexplainable atelectasis in the lungs and

> recently pulmonary edema. A couple months ago, her left eye began to

> droop a little. I recognized it as strabismus, a nephew of ours has

> strabismus and amblyopia. I thought, well, Chrystine will have to be

> patched several hours a day... Anyways, I finally get her in to meet

> an opthamologist and a couple hours later, she's given the colobomas

> diagnosis. I guess the colobomas is so rare, the opthamologist didn't

> recollect the name of it right away. Chrystine's pediatrician called

> us, and that was tht first we'd ever heard of Charge. She also has a

> heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

> hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

> feeding tube (G_Tube) in her little belly. I also would like to add

> that Chrystine has a WONDERFUL personality. And we are glad to

> introduce ourselves!!!!

>

> ***Chrystal, mother of Arleigh, 3 yrs

> Chrystine, 6 months (Charge)

> and 16 wks pregnant

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

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

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

>

[Guest guest]

Welcome Chrystal and Chrystine

my name is Lesley and I have a 16 month old daughter called Amelie with

charge,

Bilateral colobomas, profoundly deaf, no semi circular canals, poor

coordination and balance.

Hypotonia very floppy, can only just hold head up for a short time, ASD PDA

Hpertrophic cardiomyopathy, Chronic lung disease due to recurrent

pneumonias, aspiration, reflux Nissen failed, gastrostomy jejunum fed.

facial palsy, failed video fluroscopy,

and most important of all *bloody gorgeous adorable and a little minx!!*

You will find lots of great people and support here, in our charge family.

good luck Lesley x

>

> My name is Chrystal. I am just home from a 4 hour drive to a

> children's hospital where we finally received the answer. She, my

> youngest daughter (Chrystine), has Charge. She has been hospitalized

> 14 times since birth, with my pediatrician convinced that she had a

> metabolic disease. Chrystine left kidney is completely cystic (MCKD)

> and her right has one small cyst, and she has grade 4 reflux in both

> kidneys. She has also had unexplainable atelectasis in the lungs and

> recently pulmonary edema. A couple months ago, her left eye began to

> droop a little. I recognized it as strabismus, a nephew of ours has

> strabismus and amblyopia. I thought, well, Chrystine will have to be

> patched several hours a day... Anyways, I finally get her in to meet

> an opthamologist and a couple hours later, she's given the colobomas

> diagnosis. I guess the colobomas is so rare, the opthamologist didn't

> recollect the name of it right away. Chrystine's pediatrician called

> us, and that was tht first we'd ever heard of Charge. She also has a

> heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

> hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

> feeding tube (G_Tube) in her little belly. I also would like to add

> that Chrystine has a WONDERFUL personality. And we are glad to

> introduce ourselves!!!!

>

> ***Chrystal, mother of Arleigh, 3 yrs

> Chrystine, 6 months (Charge)

> and 16 wks pregnant

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

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

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

>

[Guest guest]

Welcome to your new extended family! I personally didn't join this listserv

until my daughter, Meagan, was 16 months old. What a mistake that was! I was

afraid that it would be a bunch of moms sharing their " sob stories " , no

offense to anyone here!!! Yes, we do share our stories, but " sob stories "

they are not! I have never felt so much support and friendship, as I have

from here. When I am scared I turn here. When I am worried, questioning, or

just want to share Meggy's latest milestone, I turn here!! I'm glad you made

the decision to come here as quickly as you did....you'll love it here!

Welcome to you and your growing family!

, mommy to Meagan (CHaRgE) and 18 months, and big brother

3 3/4 years, married to the best daddy in the world for 9 years

-- CHRYSTINE'S MOTHER INTRODUCES HERSELF (6 MONTHS, CHARGE)

My name is Chrystal. I am just home from a 4 hour drive to a

children's hospital where we finally received the answer. She, my

youngest daughter (Chrystine), has Charge. She has been hospitalized

14 times since birth, with my pediatrician convinced that she had a

metabolic disease. Chrystine left kidney is completely cystic (MCKD)

and her right has one small cyst, and she has grade 4 reflux in both

kidneys. She has also had unexplainable atelectasis in the lungs and

recently pulmonary edema. A couple months ago, her left eye began to

droop a little. I recognized it as strabismus, a nephew of ours has

strabismus and amblyopia. I thought, well, Chrystine will have to be

patched several hours a day... Anyways, I finally get her in to meet

an opthamologist and a couple hours later, she's given the colobomas

diagnosis. I guess the colobomas is so rare, the opthamologist didn't

recollect the name of it right away. Chrystine's pediatrician called

us, and that was tht first we'd ever heard of Charge. She also has a

heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

feeding tube (G_Tube) in her little belly. I also would like to add

that Chrystine has a WONDERFUL personality. And we are glad to

introduce ourselves!!!!

***Chrystal, mother of Arleigh, 3 yrs

Chrystine, 6 months (Charge)

and 16 wks pregnant

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

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

chargesyndrome.org or by calling 1-.

[Guest guest]

Welcome to your new extended family! I personally didn't join this listserv

until my daughter, Meagan, was 16 months old. What a mistake that was! I was

afraid that it would be a bunch of moms sharing their " sob stories " , no

offense to anyone here!!! Yes, we do share our stories, but " sob stories "

they are not! I have never felt so much support and friendship, as I have

from here. When I am scared I turn here. When I am worried, questioning, or

just want to share Meggy's latest milestone, I turn here!! I'm glad you made

the decision to come here as quickly as you did....you'll love it here!

Welcome to you and your growing family!

, mommy to Meagan (CHaRgE) and 18 months, and big brother

3 3/4 years, married to the best daddy in the world for 9 years

-- CHRYSTINE'S MOTHER INTRODUCES HERSELF (6 MONTHS, CHARGE)

My name is Chrystal. I am just home from a 4 hour drive to a

children's hospital where we finally received the answer. She, my

youngest daughter (Chrystine), has Charge. She has been hospitalized

14 times since birth, with my pediatrician convinced that she had a

metabolic disease. Chrystine left kidney is completely cystic (MCKD)

and her right has one small cyst, and she has grade 4 reflux in both

kidneys. She has also had unexplainable atelectasis in the lungs and

recently pulmonary edema. A couple months ago, her left eye began to

droop a little. I recognized it as strabismus, a nephew of ours has

strabismus and amblyopia. I thought, well, Chrystine will have to be

patched several hours a day... Anyways, I finally get her in to meet

an opthamologist and a couple hours later, she's given the colobomas

diagnosis. I guess the colobomas is so rare, the opthamologist didn't

recollect the name of it right away. Chrystine's pediatrician called

us, and that was tht first we'd ever heard of Charge. She also has a

heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

feeding tube (G_Tube) in her little belly. I also would like to add

that Chrystine has a WONDERFUL personality. And we are glad to

introduce ourselves!!!!

***Chrystal, mother of Arleigh, 3 yrs

Chrystine, 6 months (Charge)

and 16 wks pregnant

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

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

chargesyndrome.org or by calling 1-.

[Guest guest]

Welcome to your new extended family! I personally didn't join this listserv

until my daughter, Meagan, was 16 months old. What a mistake that was! I was

afraid that it would be a bunch of moms sharing their " sob stories " , no

offense to anyone here!!! Yes, we do share our stories, but " sob stories "

they are not! I have never felt so much support and friendship, as I have

from here. When I am scared I turn here. When I am worried, questioning, or

just want to share Meggy's latest milestone, I turn here!! I'm glad you made

the decision to come here as quickly as you did....you'll love it here!

Welcome to you and your growing family!

, mommy to Meagan (CHaRgE) and 18 months, and big brother

3 3/4 years, married to the best daddy in the world for 9 years

-- CHRYSTINE'S MOTHER INTRODUCES HERSELF (6 MONTHS, CHARGE)

My name is Chrystal. I am just home from a 4 hour drive to a

children's hospital where we finally received the answer. She, my

youngest daughter (Chrystine), has Charge. She has been hospitalized

14 times since birth, with my pediatrician convinced that she had a

metabolic disease. Chrystine left kidney is completely cystic (MCKD)

and her right has one small cyst, and she has grade 4 reflux in both

kidneys. She has also had unexplainable atelectasis in the lungs and

recently pulmonary edema. A couple months ago, her left eye began to

droop a little. I recognized it as strabismus, a nephew of ours has

strabismus and amblyopia. I thought, well, Chrystine will have to be

patched several hours a day... Anyways, I finally get her in to meet

an opthamologist and a couple hours later, she's given the colobomas

diagnosis. I guess the colobomas is so rare, the opthamologist didn't

recollect the name of it right away. Chrystine's pediatrician called

us, and that was tht first we'd ever heard of Charge. She also has a

heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

feeding tube (G_Tube) in her little belly. I also would like to add

that Chrystine has a WONDERFUL personality. And we are glad to

introduce ourselves!!!!

***Chrystal, mother of Arleigh, 3 yrs

Chrystine, 6 months (Charge)

and 16 wks pregnant

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

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

chargesyndrome.org or by calling 1-.

[Guest guest]

Hi Chrystal,

I echo others in saying welcome to the group. I have not only found great

support here, but a weath of knowledge as well. You have your own panel of

experts at your disposal! My son Evan is almost 10 months old now, and he

wasn't able to hold his head up really well until maybe a month ago. Now we are

working on sitting--and he's getting it! His dad and I are so proud of him.

Evan has a small coloboma, has urinary reflux to his solitary kidney, and has a

g-tube too.

Evan has a website: www.babysites.com/sites/skeybunny which we keep updated,

and there are some links to the web pages of several other CHARGE kiddos.

cjcrites1 wrote:

My name is Chrystal. I am just home from a 4 hour drive to a

children's hospital where we finally received the answer. She, my

youngest daughter (Chrystine), has Charge. She has been hospitalized

14 times since birth, with my pediatrician convinced that she had a

metabolic disease. Chrystine left kidney is completely cystic (MCKD)

and her right has one small cyst, and she has grade 4 reflux in both

kidneys. She has also had unexplainable atelectasis in the lungs and

recently pulmonary edema. A couple months ago, her left eye began to

droop a little. I recognized it as strabismus, a nephew of ours has

strabismus and amblyopia. I thought, well, Chrystine will have to be

patched several hours a day... Anyways, I finally get her in to meet

an opthamologist and a couple hours later, she's given the colobomas

diagnosis. I guess the colobomas is so rare, the opthamologist didn't

recollect the name of it right away. Chrystine's pediatrician called

us, and that was tht first we'd ever heard of Charge. She also has a

heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

feeding tube (G_Tube) in her little belly. I also would like to add

that Chrystine has a WONDERFUL personality. And we are glad to

introduce ourselves!!!!

***Chrystal, mother of Arleigh, 3 yrs

Chrystine, 6 months (Charge)

and 16 wks pregnant

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Hi Chrystal,

I echo others in saying welcome to the group. I have not only found great

support here, but a weath of knowledge as well. You have your own panel of

experts at your disposal! My son Evan is almost 10 months old now, and he

wasn't able to hold his head up really well until maybe a month ago. Now we are

working on sitting--and he's getting it! His dad and I are so proud of him.

Evan has a small coloboma, has urinary reflux to his solitary kidney, and has a

g-tube too.

Evan has a website: www.babysites.com/sites/skeybunny which we keep updated,

and there are some links to the web pages of several other CHARGE kiddos.

cjcrites1 wrote:

My name is Chrystal. I am just home from a 4 hour drive to a

children's hospital where we finally received the answer. She, my

youngest daughter (Chrystine), has Charge. She has been hospitalized

14 times since birth, with my pediatrician convinced that she had a

metabolic disease. Chrystine left kidney is completely cystic (MCKD)

and her right has one small cyst, and she has grade 4 reflux in both

kidneys. She has also had unexplainable atelectasis in the lungs and

recently pulmonary edema. A couple months ago, her left eye began to

droop a little. I recognized it as strabismus, a nephew of ours has

strabismus and amblyopia. I thought, well, Chrystine will have to be

patched several hours a day... Anyways, I finally get her in to meet

an opthamologist and a couple hours later, she's given the colobomas

diagnosis. I guess the colobomas is so rare, the opthamologist didn't

recollect the name of it right away. Chrystine's pediatrician called

us, and that was tht first we'd ever heard of Charge. She also has a

heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

feeding tube (G_Tube) in her little belly. I also would like to add

that Chrystine has a WONDERFUL personality. And we are glad to

introduce ourselves!!!!

***Chrystal, mother of Arleigh, 3 yrs

Chrystine, 6 months (Charge)

and 16 wks pregnant

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Hi Chrystal,

I echo others in saying welcome to the group. I have not only found great

support here, but a weath of knowledge as well. You have your own panel of

experts at your disposal! My son Evan is almost 10 months old now, and he

wasn't able to hold his head up really well until maybe a month ago. Now we are

working on sitting--and he's getting it! His dad and I are so proud of him.

Evan has a small coloboma, has urinary reflux to his solitary kidney, and has a

g-tube too.

Evan has a website: www.babysites.com/sites/skeybunny which we keep updated,

and there are some links to the web pages of several other CHARGE kiddos.

cjcrites1 wrote:

My name is Chrystal. I am just home from a 4 hour drive to a

children's hospital where we finally received the answer. She, my

youngest daughter (Chrystine), has Charge. She has been hospitalized

14 times since birth, with my pediatrician convinced that she had a

metabolic disease. Chrystine left kidney is completely cystic (MCKD)

and her right has one small cyst, and she has grade 4 reflux in both

kidneys. She has also had unexplainable atelectasis in the lungs and

recently pulmonary edema. A couple months ago, her left eye began to

droop a little. I recognized it as strabismus, a nephew of ours has

strabismus and amblyopia. I thought, well, Chrystine will have to be

patched several hours a day... Anyways, I finally get her in to meet

an opthamologist and a couple hours later, she's given the colobomas

diagnosis. I guess the colobomas is so rare, the opthamologist didn't

recollect the name of it right away. Chrystine's pediatrician called

us, and that was tht first we'd ever heard of Charge. She also has a

heart defect, ASD. She has hypotonia. She is 6 mohts old and cannot

hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

feeding tube (G_Tube) in her little belly. I also would like to add

that Chrystine has a WONDERFUL personality. And we are glad to

introduce ourselves!!!!

***Chrystal, mother of Arleigh, 3 yrs

Chrystine, 6 months (Charge)

and 16 wks pregnant

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Hi Chrystal!

Welcome to the group! Here you will get a lot of information and have many

parents to talk with. This is a very informative group........Congratulations

on your pregnancy too...We are expecting our 4th child which is due the end of

June. How is the pregnancy going? What state are you in? Its always nice to

see new families added to the list! If you have any questions, please feel

free to email me....Welcome again!!

Sincerely,

Tia

[Guest guest]

Hi Chrystal!

Welcome to the group! Here you will get a lot of information and have many

parents to talk with. This is a very informative group........Congratulations

on your pregnancy too...We are expecting our 4th child which is due the end of

June. How is the pregnancy going? What state are you in? Its always nice to

see new families added to the list! If you have any questions, please feel

free to email me....Welcome again!!

Sincerely,

Tia

[Guest guest]

Hi Chrystal!

Welcome to the group! Here you will get a lot of information and have many

parents to talk with. This is a very informative group........Congratulations

on your pregnancy too...We are expecting our 4th child which is due the end of

June. How is the pregnancy going? What state are you in? Its always nice to

see new families added to the list! If you have any questions, please feel

free to email me....Welcome again!!

Sincerely,

Tia

[Guest guest]

Chrystal-

Welcome! I'm sure you're relieved to have a reason for all the lovely

surprises you've been encountering with Chrystine! My daughter is now 8

years old. We began on the list before she was 3 months. It's been a

lifesaver for me -- and for Aubrie too. Without the info I have here, I'd

never had been able to make the right decisions on education, medical, etc.

Of course, sometimes there is no " right " decision, but at least we have a

place to weigh the pros and cons with people who have " been there, done

that " . I look forward to hearing more about Chrystine and your family.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Chrystal-

Welcome! I'm sure you're relieved to have a reason for all the lovely

surprises you've been encountering with Chrystine! My daughter is now 8

years old. We began on the list before she was 3 months. It's been a

lifesaver for me -- and for Aubrie too. Without the info I have here, I'd

never had been able to make the right decisions on education, medical, etc.

Of course, sometimes there is no " right " decision, but at least we have a

place to weigh the pros and cons with people who have " been there, done

that " . I look forward to hearing more about Chrystine and your family.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Chrystal-

Welcome! I'm sure you're relieved to have a reason for all the lovely

surprises you've been encountering with Chrystine! My daughter is now 8

years old. We began on the list before she was 3 months. It's been a

lifesaver for me -- and for Aubrie too. Without the info I have here, I'd

never had been able to make the right decisions on education, medical, etc.

Of course, sometimes there is no " right " decision, but at least we have a

place to weigh the pros and cons with people who have " been there, done

that " . I look forward to hearing more about Chrystine and your family.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Chrytine,

welcome!!

where are you from???

pam

[Guest guest]

Chrytine,

welcome!!

where are you from???

pam

[Guest guest]

Chrytine,

welcome!!

where are you from???

pam

[Guest guest]

Welcome to CHARGEland Chrystal my name is Crystal (LOL) and I have a

12 month old daughter named Eva with CHARGE and she just came home

from having open heart surgery to close her ASD. When she was 2

months old they clamped of her PDA. She was born with one kidney,

colobomas, hearing loss, and a narrow airway. She also has the g-

tube and is on O2 to help with her high blood pressure around her

heart and her sleep apnea.

I also have 2 boys who is 10 and who is 3 and they are

doing great and they love thier little sister.

Wow your pregnant again?? You are going to have your hands full (not

like they arnt already)

I hope we can help you with any questions you may have and I know

when I found this group I was very happy and have made some great

friends.

Hope to hear more about your daughter and I hope she does better

soon.

Crystal and Eva (1 year old CHARGEr)

>

> My name is Chrystal. I am just home from a 4 hour drive to a

> children's hospital where we finally received the answer. She, my

> youngest daughter (Chrystine), has Charge. She has been

hospitalized

> 14 times since birth, with my pediatrician convinced that she had

a

> metabolic disease. Chrystine left kidney is completely cystic

(MCKD)

> and her right has one small cyst, and she has grade 4 reflux in

both

> kidneys. She has also had unexplainable atelectasis in the lungs

and

> recently pulmonary edema. A couple months ago, her left eye began

to

> droop a little. I recognized it as strabismus, a nephew of ours

has

> strabismus and amblyopia. I thought, well, Chrystine will have to

be

> patched several hours a day... Anyways, I finally get her in to

meet

> an opthamologist and a couple hours later, she's given the

colobomas

> diagnosis. I guess the colobomas is so rare, the opthamologist

didn't

> recollect the name of it right away. Chrystine's pediatrician

called

> us, and that was tht first we'd ever heard of Charge. She also has

a

> heart defect, ASD. She has hypotonia. She is 6 mohts old and

cannot

> hold her head up, YET. She weighs in at 10 pounds and 6 oz, with a

> feeding tube (G_Tube) in her little belly. I also would like to

add

> that Chrystine has a WONDERFUL personality. And we are glad to

> introduce ourselves!!!!

>

> ***Chrystal, mother of Arleigh, 3 yrs

> Chrystine, 6 months (Charge)

> and 16 wks pregnant

>

[Guest guest]

Welcome to the listserv! I'm glad you finally got some answers, you must

have been frustrated not knowing what was causing all the hospitalizations!

Hugs,

--

Weir

kawfolks@...

Web Site: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

chrystal welcome im a charger nearly 21 ive got colibomas to and hearing

probs and many other stuff this group is the best for people like us as

brandi said we share out sotries but they arent bad soem are but we dotn

call them sobs we call them ventings lol hugs ellen

>

> Hi Chrystal!

> Welcome to the group! Here you will get a lot of information and have many

> parents to talk with. This is a very informative

> group........Congratulations

> on your pregnancy too...We are expecting our 4th child which is due the

> end of

> June. How is the pregnancy going? What state are you in? Its always nice

> to

> see new families added to the list! If you have any questions, please

> feel

> free to email me....Welcome again!!

>

> Sincerely,

> Tia

>

>

>

[Guest guest]

Hi Tia, ellen, crystal & everyone here... I can't tell you what it means to

me to speak to this group and thanks soooo much for the welcome. i have

needed people to relate to for so long. i have been reading different posts...

im

like-woa, thats so much like her..... and im just so comforted by that for

some reason. i love being a mother. i am 16 wks pregnant, due in mid october

(no surprise, all my kids are october)

it was a surprise from the start... i have spent most of it so far in the

children's hospital in our city here in west virginia with chrystine and a

baffled bunch of doctors and nurses!!! she is such a charmer... i think if i

turned my back for a second, someone would run off with chrystine.

[Guest guest]

Hi Tia, ellen, crystal & everyone here... I can't tell you what it means to

me to speak to this group and thanks soooo much for the welcome. i have

needed people to relate to for so long. i have been reading different posts...

im

like-woa, thats so much like her..... and im just so comforted by that for

some reason. i love being a mother. i am 16 wks pregnant, due in mid october

(no surprise, all my kids are october)

it was a surprise from the start... i have spent most of it so far in the

children's hospital in our city here in west virginia with chrystine and a

baffled bunch of doctors and nurses!!! she is such a charmer... i think if i

turned my back for a second, someone would run off with chrystine.