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,

I am so happy for the two of you. Only thing though, you don't want to make

your family larger now do you? Be mindful of the fun you will have. What am

I saying, when we go away we like to ----sleep. I have a feeling you need the

rest too!

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

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Sounds like heaven, !! Thank you for the welcome! We live in Franconia,

PA. About 25 miles North of Philly. Yeah, we used to take BObby to CHOP. Dr.

Zachai (Genetics) never mentioned CHARGE. No one seemed to know what he had,

nor did they keep each other in the loop about him!

Today we traveled over an hour to ST. s, in Philly, and they turned

us away from the outpatient procedures!! He snuck a small bite of banana about

7 am, and I figured that by noon, it wouldn't have mattered! Nope, they sent us

home!!! I was furious!!! They think he would aspirate that small piece from 5

hours before?? I would think the body digested it!

So we still don't know if he has the Submucous Cleft Palate. I don';t know if

I should try getting him checked again at CHOP, or try again at St.

Chrisotphers, or wait!

Any recommendations?

FINALLY

hi all, just wanted to share some good news. Pat and I FINALLY made our

anniversary trip plans and booked it. we are going to Mayan

specifically Playa del Carmen. I am soooo excited!!! this is the first time we

will go away for longer than 1 night ourselves. my parents are coming to stay

with the boys. we aren't going until june--when the boys are out of school --so

I'm hoping to lose a few pounds before then. AN ENTIRE WEEK WITH PAT TO

MYSELF!!!! don't get me wrong, I love my kids soo much and I'm sure I will miss

them, but pat and I need this too.

ok, back to real life, need to change the laundry, take out the garbage, put

clothes away do the dishes, pick up liam, he has 1/2 day today. take care and

welcome to --I'm sorry your name escapes me right now-valerie??? where do you

live? we go to chop. we are in NJ--phillipsburg.

, mom to Timmy 10 ChARGE, still can't get used to writng 10 for his age,

keegan 7, liam 5 wife to pat

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We don't have those issues, but have always had good luck at chop. our ent

is dr.tom, urology dr. canning, endo, dr. grimburg, and audiology sara

mckay. we have been with chop since tim was 1 day old. had his 1st surgery

(nasal) at 6 days. it's about 90 minutes for us. good luck--hope you find

answers.

FINALLY

>

>

> hi all, just wanted to share some good news. Pat and I FINALLY made our

> anniversary trip plans and booked it. we are going to Mayan

> specifically Playa del Carmen. I am soooo excited!!! this is the first

> time we will go away for longer than 1 night ourselves. my parents are

> coming to stay with the boys. we aren't going until june--when the boys

> are out of school --so I'm hoping to lose a few pounds before then. AN

> ENTIRE WEEK WITH PAT TO MYSELF!!!! don't get me wrong, I love my kids soo

> much and I'm sure I will miss them, but pat and I need this too.

>

> ok, back to real life, need to change the laundry, take out the garbage,

> put clothes away do the dishes, pick up liam, he has 1/2 day today. take

> care and welcome to --I'm sorry your name escapes me right now-valerie???

> where do you live? we go to chop. we are in NJ--phillipsburg.

>

> , mom to Timmy 10 ChARGE, still can't get used to writng 10 for his

> age, keegan 7, liam 5 wife to pat

>

>

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Hi ,

Welcome! Sorry I am just getting around to welcoming you, Bobby and your

family. My daughter Raegan is 8 months old, diagnosed with CHARGE when she was

about 2 weeks old. We also live just outside of Philly, about 20 minutes in

Havertown. Raegan was born at Bryn Mawr Hospital and when she was 2 days old she

was transferred to A.I. DuPont Hospital for Children in Wilmington, Delaware.

Delaware sounds far, but it really isn't. It only takes me 35 minutes to get

there. I have been very pleased with all of her specialist and they are all very

familiar with CHARGE. Maybe you'll want to try for yourself? Again, Welcome!

Judy

valerie walker wrote:

Sounds like heaven, !! Thank you for the welcome! We live in Franconia,

PA. About 25 miles North of Philly. Yeah, we used to take BObby to CHOP. Dr.

Zachai (Genetics) never mentioned CHARGE. No one seemed to know what he had,

nor did they keep each other in the loop about him!

Today we traveled over an hour to ST. s, in Philly, and they turned

us away from the outpatient procedures!! He snuck a small bite of banana about

7 am, and I figured that by noon, it wouldn't have mattered! Nope, they sent us

home!!! I was furious!!! They think he would aspirate that small piece from 5

hours before?? I would think the body digested it!

So we still don't know if he has the Submucous Cleft Palate. I don';t know if

I should try getting him checked again at CHOP, or try again at St.

Chrisotphers, or wait!

Any recommendations?

FINALLY

hi all, just wanted to share some good news. Pat and I FINALLY made our

anniversary trip plans and booked it. we are going to Mayan

specifically Playa del Carmen. I am soooo excited!!! this is the first time we

will go away for longer than 1 night ourselves. my parents are coming to stay

with the boys. we aren't going until june--when the boys are out of school --so

I'm hoping to lose a few pounds before then. AN ENTIRE WEEK WITH PAT TO

MYSELF!!!! don't get me wrong, I love my kids soo much and I'm sure I will miss

them, but pat and I need this too.

ok, back to real life, need to change the laundry, take out the garbage, put

clothes away do the dishes, pick up liam, he has 1/2 day today. take care and

welcome to --I'm sorry your name escapes me right now-valerie??? where do you

live? we go to chop. we are in NJ--phillipsburg.

, mom to Timmy 10 ChARGE, still can't get used to writng 10 for his age,

keegan 7, liam 5 wife to pat

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,

That is so great!! I hope you have a great time (I am sure you will),

Crystal and Eva (9 month charger)

P.S. I also have a 10year and cant get use to do that either....lol.

>

> hi all, just wanted to share some good news. Pat and I FINALLY

made our anniversary trip plans and booked it. we are going to

Mayan specifically Playa del Carmen. I am soooo excited!!!

this is the first time we will go away for longer than 1 night

ourselves. my parents are coming to stay with the boys. we aren't

going until june--when the boys are out of school --so I'm hoping to

lose a few pounds before then. AN ENTIRE WEEK WITH PAT TO

MYSELF!!!! don't get me wrong, I love my kids soo much and I'm sure

I will miss them, but pat and I need this too.

>

> ok, back to real life, need to change the laundry, take out the

garbage, put clothes away do the dishes, pick up liam, he has 1/2

day today. take care and welcome to --I'm sorry your name escapes

me right now-valerie??? where do you live? we go to chop. we are

in NJ--phillipsburg.

>

> , mom to Timmy 10 ChARGE, still can't get used to writng 10

for his age, keegan 7, liam 5 wife to pat

>

>

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LOL have fun maria xxxxxxxxxxxxxxxxxxxxxx ellen

>

> ,

> That is so great!! I hope you have a great time (I am sure you will),

>

> Crystal and Eva (9 month charger)

> P.S. I also have a 10year and cant get use to do that either....lol.

>

>

> >

> > hi all, just wanted to share some good news. Pat and I FINALLY

> made our anniversary trip plans and booked it. we are going to

> Mayan specifically Playa del Carmen. I am soooo excited!!!

> this is the first time we will go away for longer than 1 night

> ourselves. my parents are coming to stay with the boys. we aren't

> going until june--when the boys are out of school --so I'm hoping to

> lose a few pounds before then. AN ENTIRE WEEK WITH PAT TO

> MYSELF!!!! don't get me wrong, I love my kids soo much and I'm sure

> I will miss them, but pat and I need this too.

> >

> > ok, back to real life, need to change the laundry, take out the

> garbage, put clothes away do the dishes, pick up liam, he has 1/2

> day today. take care and welcome to --I'm sorry your name escapes

> me right now-valerie??? where do you live? we go to chop. we are

> in NJ--phillipsburg.

> >

> > , mom to Timmy 10 ChARGE, still can't get used to writng 10

> for his age, keegan 7, liam 5 wife to pat

> >

> >

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i'm not excited, although, it is on a week-end so the boys and pat will

shovel it all.

maria

Re: FINALLY

> ,

> You guys expecting snow too? We are in land so your not too far from

> us...Let it snow, let it snow, let it snow!!!!!

>

> Tia

>

>

>

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NO!! we just got out new baby he's 14.6 pounds, black tan and white, has

the cutest underbite, 4 legs, a tail, and is potty trained for the most

part. :) there will be no more babies no matter how much practice we have!!

Re: FINALLY

> ,

>

> I am so happy for the two of you. Only thing though, you don't want to

> make

> your family larger now do you? Be mindful of the fun you will have. What

> am

> I saying, when we go away we like to ----sleep. I have a feeling you need

> the

> rest too!

>

>

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>

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honestly, the time goes too fast!!

maria

Re: FINALLY

> ,

> That is so great!! I hope you have a great time (I am sure you will),

>

> Crystal and Eva (9 month charger)

> P.S. I also have a 10year and cant get use to do that either....lol.

>

>

>>

>> hi all, just wanted to share some good news. Pat and I FINALLY

> made our anniversary trip plans and booked it. we are going to

> Mayan specifically Playa del Carmen. I am soooo excited!!!

> this is the first time we will go away for longer than 1 night

> ourselves. my parents are coming to stay with the boys. we aren't

> going until june--when the boys are out of school --so I'm hoping to

> lose a few pounds before then. AN ENTIRE WEEK WITH PAT TO

> MYSELF!!!! don't get me wrong, I love my kids soo much and I'm sure

> I will miss them, but pat and I need this too.

>>

>> ok, back to real life, need to change the laundry, take out the

> garbage, put clothes away do the dishes, pick up liam, he has 1/2

> day today. take care and welcome to --I'm sorry your name escapes

> me right now-valerie??? where do you live? we go to chop. we are

> in NJ--phillipsburg.

>>

>> , mom to Timmy 10 ChARGE, still can't get used to writng 10

> for his age, keegan 7, liam 5 wife to pat

>>

>>

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