Re: Newbie, Reuben born 2 May 2007, Yuka fantastic help

[Guest guest]

,

I'm so pleased you've met Yuka and and have found the list. We had no

pre-diagnosis with our daughter Kennedy either. It's very stressful and

overwhelming at first when you're getting all this information bombarding

you but I promise it gets easier. RE: the g tube/fundo surgery, it is scary

but I can say to you with all honesty that in our case, it was the most

positive life-changing surgery for our girl out of all them. We'll be

thinking of you tomorrow, please let us know how Reuben is doing when you

can. I look forward to meeting you in California.

Kennedy's Mom

www.chargesyndrome.info

NB, Canada

>

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the condition, heart

> murmur and large hole, facial palsy on 7th nerve, undescended

> testes. A week later Charge syndrome linked the conditions. Worst

> day of our lives. 6 year battle to conceive culminating in open

> surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> like our happy ending. But the hard journey's just begun.

>

> Yuka has been fantastic. We met her and last week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared about this.

>

> Feel isolated from friends in the UK and acquaintances in LA where

> we now reside (we're British). We'll be at Costa Mesa in July.

>

> x

>

>

>

--

" 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]

Congratulations on Reubens arrival, it is very difficult to come to terms

with initially, we didnt know either.

You will find all the support you need here on this listserv.

We live in the UK Manchester, our daughter Amélie is 2 years 5 months, she

is our fourth daughter.

Amélie is adorable and you will soon realise the precious gift you have

been given, once you find your feet, you need to take

one day at a time and ask as many questions as you need to.

Amélie has had a fundoplication Gastrostomy, and is now fed via a

jejunostomy which works very well

for her. Good luck tomorrow with surgery.

hugs Lesley x Amélie and Family x

>

> ,

> I'm so pleased you've met Yuka and and have found the list. We had

> no

> pre-diagnosis with our daughter Kennedy either. It's very stressful and

> overwhelming at first when you're getting all this information bombarding

> you but I promise it gets easier. RE: the g tube/fundo surgery, it is

> scary

> but I can say to you with all honesty that in our case, it was the most

> positive life-changing surgery for our girl out of all them. We'll be

> thinking of you tomorrow, please let us know how Reuben is doing when you

> can. I look forward to meeting you in California.

>

>

> Kennedy's Mom

> www.chargesyndrome.info

> NB, Canada

>

> On 5/30/07, cthrn_ddd

catherine_lacey_dodd@...>

> wrote:

> >

> > hi all

> >

> > Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> > that normal?

> >

> > Drip fed information since his birth about the condition, heart

> > murmur and large hole, facial palsy on 7th nerve, undescended

> > testes. A week later Charge syndrome linked the conditions. Worst

> > day of our lives. 6 year battle to conceive culminating in open

> > surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> > like our happy ending. But the hard journey's just begun.

> >

> > Yuka has been fantastic. We met her and last week after an

> > introduction via my best friend in the UK.

> >

> > 31 May - Gtube and fondiplication - am very scared about this.

> >

> > Feel isolated from friends in the UK and acquaintances in LA where

> > we now reside (we're British). We'll be at Costa Mesa in July.

> >

> > x

> >

> >

> >

>

> --

> " 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]

forgot to add about the feelings of isolation...I too lost friendships and

family distance themselves

they just dont know how to handle the situation or what to say for the best.

BUT be reassured I have more friends who care now, through Amélie than I

ever had in my 39 years of making

friends. Amélie has made me a better person too, caring, life changing I am

so grateful for all the changes

in my life she has brought me.

Hope this helps you...Lesley x

>

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the condition, heart

> murmur and large hole, facial palsy on 7th nerve, undescended

> testes. A week later Charge syndrome linked the conditions. Worst

> day of our lives. 6 year battle to conceive culminating in open

> surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> like our happy ending. But the hard journey's just begun.

>

> Yuka has been fantastic. We met her and last week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared about this.

>

> Feel isolated from friends in the UK and acquaintances in LA where

> we now reside (we're British). We'll be at Costa Mesa in July.

>

> x

>

>

>

[Guest guest]

Hi ,

More fellow Brits here...is and Neil and our son is aged 3 and a

half. We live in Ascot, Berkshire.

No pre-diagnosis for us either. I can relate to the shock you are

feeling. Yes, it is a different journey, undeniably hard and scary in places

but also amazing and inspiring too. To be honest I still feel isolated in

some ways from my friends here who have had medically unremarkable

babies...which is why this listserv is a life saver! Unless you have shared

this experience it is hard to understand it.

Our thoughts will be with you for the operations coming up, has a

gtube too but not the fundo. I was very scared about the tube, but it was

fine and has been no trouble to manage. Managing my feeling about him not

eating was the bigger challenge and I am still working on it!

I really look forward to hearing more about Reuben.

I'm coming over (on my own) for the conference in July so hope to meet you

then...if you want to chat to a fellow Brit on the phone by all means

contact me alexis_wolfe@... and we'd be more than happy to call you.

My sister lives in San Francisco so I am used to the time difference and

have a cheap phonecalls deals lined up!

Best wishes,

is

>

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the condition, heart

> murmur and large hole, facial palsy on 7th nerve, undescended

> testes. A week later Charge syndrome linked the conditions. Worst

> day of our lives. 6 year battle to conceive culminating in open

> surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> like our happy ending. But the hard journey's just begun.

>

> Yuka has been fantastic. We met her and last week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared about this.

>

> Feel isolated from friends in the UK and acquaintances in LA where

> we now reside (we're British). We'll be at Costa Mesa in July.

>

> x

>

>

>

[Guest guest]

Hi ,

Our was born 1/16/07 with no pre-diagnosis either. We had

several level 2 ultrasounds due to mildly enlarged ventricles in her

brain. That was gone at birth, but several defects that could have

been seen on ultrasounds existed. The hole in her heart, the boney

mass choanal atresia, her low set left ear (which I questioned

seeing it on the ultra sound). I don't think it is common for

Charge to be diagnosed during the pregnancey - depending on what

symptoms the baby has.

It was overwhelming as the defects kept getting diagnosed for us.

It has gotten easier and better with time. At 4 1/2 months, we have

a better understanding of her condition and are enjoying having her

home with us. She is smiling, laughing and rolling onto her tummy

from back.

is getting her g-tube June 6th. She still has her ng

tube. She had a swallow study and upper GI done that were ok, but

she will not take more than an ounce at a time by mouth. She gets

her hearing aids fitted after the gtube surgery. There are still

many dr appointments and a few future surgeries, but is so nice to

be home with the baby and to enjoy her.

I don't post often, but I do read the discussions here and people's

baby blogs. There are a lot of nice people here with good advice

and experience. It helped me to know I was not alone and there are

people who really understand what we're going through.

Prayers and good thoughts for Reuben's surgery tomorrow!

Margaret

Mom to 20, Dale 13 and 4 1/2 month CHARGEr

>

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the condition, heart

> murmur and large hole, facial palsy on 7th nerve, undescended

> testes. A week later Charge syndrome linked the conditions. Worst

> day of our lives. 6 year battle to conceive culminating in open

> surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> like our happy ending. But the hard journey's just begun.

>

> Yuka has been fantastic. We met her and last week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared about this.

>

> Feel isolated from friends in the UK and acquaintances in LA where

> we now reside (we're British). We'll be at Costa Mesa in July.

>

> x

>

[Guest guest]

Hi (and family),

Welcome to the list.

I didn't get a pre-diagnosis exactly. My son Evan was born 8 weeks premature

(ruptured membranes due to too much amniotic fluid). I had known about the

fluid for about a month and my Drs were doing U/S and tests to figure out why

there was extra fluid. The week before he was born, I was told because they

also found an abnormal kidney and he appeared to have a small stomach on

high-resolution U/S that my son most likely had " some syndrome. " They said they

couldn't be any more specific until after his birth. They recommended

repeating the high-res U/S in 2 weeks, but I didn't make it that long.

Because we knew " something " ahead of time, I was transferred to a hospital

with an anitpartum unit and good NICU. The NICU team gave my son the once-over

when he was born. There had actually been 2 other babies born with CHARGE

Syndrome at the same hospital within the past 1 1/2 months, so the Drs. had

suspicions that's what Evan had. Still, we didn't get the diagnosis until he

was a week old. Even after the diagnosis, we were still learning new parts of

the syndrome that Evan had (there are so many manifestations and variations).

With very young infants, the Drs often times can not make predictions--it's a

lot of wait and see. Imaging studies and tests often don't give a clear-cut

answer.

I truly believe that our family found out about CHARGE in stages for a

reason--I think if I would have been hit with everything all at once, I would

have lost it. Finding out bit by bit was not by any means easy, but I could

process and accept in stages.

Again, welcome to the list. We will be at the conference too.

(mom to Evan, 22 months)

www.babysites.com/sites/skeybunny

cthrn_ddd catherine_lacey_dodd@...> wrote:

hi all

Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

that normal?

Drip fed information since his birth about the condition, heart

murmur and large hole, facial palsy on 7th nerve, undescended

testes. A week later Charge syndrome linked the conditions. Worst

day of our lives. 6 year battle to conceive culminating in open

surgery for fibroids, IUI, and several IVFs with ICSI. This felt

like our happy ending. But the hard journey's just begun.

Yuka has been fantastic. We met her and last week after an

introduction via my best friend in the UK.

31 May - Gtube and fondiplication - am very scared about this.

Feel isolated from friends in the UK and acquaintances in LA where

we now reside (we're British). We'll be at Costa Mesa in July.

x

---------------------------------

Sucker-punch spam with award-winning protection.

Try the free Yahoo! Mail Beta.

[Guest guest]

Hi ,

Our was born 1/16/07 with no pre-diagnosis either. We had

several level 2 ultrasounds due to mildly enlarged ventricles in her

brain. That was gone at birth, but several defects that could have

been seen on ultrasounds existed. The hole in her heart, the boney

mass choanal atresia, her low set left ear (which I questioned

seeing it on the ultra sound). I don't think it is common for

Charge to be diagnosed during the pregnancey - depending on what

symptoms the baby has.

It was overwhelming as the defects kept getting diagnosed for us.

It has gotten easier and better with time. At 4 1/2 months, we have

a better understanding of her condition and are enjoying having her

home with us. She is smiling, laughing and rolling onto her tummy

from back.

is getting her g-tube June 6th. She still has her ng

tube. She had a swallow study and upper GI done that were ok, but

she will not take more than an ounce at a time by mouth. She gets

her hearing aids fitted after the gtube surgery. There are still

many dr appointments and a few future surgeries, but is so nice to

be home with the baby and to enjoy her.

I don't post often, but I do read the discussions here and people's

baby blogs. There are a lot of nice people here with good advice

and experience. It helped me to know I was not alone and there are

people who really understand what we're going through.

Prayers and good thoughts for Reuben's surgery tomorrow!

Margaret

Mom to 20, Dale 13 and 4 1/2 month CHARGEr

>

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the condition, heart

> murmur and large hole, facial palsy on 7th nerve, undescended

> testes. A week later Charge syndrome linked the conditions. Worst

> day of our lives. 6 year battle to conceive culminating in open

> surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> like our happy ending. But the hard journey's just begun.

>

> Yuka has been fantastic. We met her and last week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared about this.

>

> Feel isolated from friends in the UK and acquaintances in LA where

> we now reside (we're British). We'll be at Costa Mesa in July.

>

> x

>

[Guest guest]

welcome to the group you will be amazed how much these lovely people will help

you, see you in calif.

maria mom to tim 11 ChARGE, keegan 9, liam 6 wife to pat

Newbie, Reuben born 2 May 2007, Yuka fantastic help

hi all

Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

that normal?

Drip fed information since his birth about the condition, heart

murmur and large hole, facial palsy on 7th nerve, undescended

testes. A week later Charge syndrome linked the conditions. Worst

day of our lives. 6 year battle to conceive culminating in open

surgery for fibroids, IUI, and several IVFs with ICSI. This felt

like our happy ending. But the hard journey's just begun.

Yuka has been fantastic. We met her and last week after an

introduction via my best friend in the UK.

31 May - Gtube and fondiplication - am very scared about this.

Feel isolated from friends in the UK and acquaintances in LA where

we now reside (we're British). We'll be at Costa Mesa in July.

x

[Guest guest]

Hi ,

Mt daughter was born 2/28/07, and there was nothing said before birth

that she had CHARGE or any of the symptoms. After she was diagnosed

with choanal atresia, heart defects, and hearing and vision

impairment we had a young doctor that was determined to figure out

why for me. She is the one that put it all together and diagnosed the

CHARGE. It is a huge adjustment, but you will find this group

unbelievably helpful and supporting in the days to come.

Trish

Mom to DeJay,4

ah, 3

and Sammy 3 months CHARGEr

>

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the condition, heart

> murmur and large hole, facial palsy on 7th nerve, undescended

> testes. A week later Charge syndrome linked the conditions. Worst

> day of our lives. 6 year battle to conceive culminating in open

> surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> like our happy ending. But the hard journey's just begun.

>

> Yuka has been fantastic. We met her and last week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared about this.

>

> Feel isolated from friends in the UK and acquaintances in LA where

> we now reside (we're British). We'll be at Costa Mesa in July.

>

> x

>

[Guest guest]

,

Welcome to the list, WE also did not have any idea. Our daughter was also

conceived through IVF, and she took us 5 years!

Life gets easier, and we are all here for you.

Cathie, mom to 1yr

************************************** See what's free at http://www.aol.com.

[Guest guest]

Welcome, my name is Crystal and my CHARGEr is Eva and she is 2. I

also have 2 older boys, (11), and (4). We knew Eva had

some issues before she was born but we did not hear the world CHARGE

until about a week after birth. She had an ASD And PDA of the heart,

one kidney, feeding issues, hearing loss, colubomas, and facial

paralysis.

I am so glad you found Yuka, I know I wish she was closer for me to

talk to but she give great advice on here and has wonderful things

to say.

This is a great group and we all help one anther as much as we can.

Hugs,

Crystal

>

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the condition, heart

> murmur and large hole, facial palsy on 7th nerve, undescended

> testes. A week later Charge syndrome linked the conditions. Worst

> day of our lives. 6 year battle to conceive culminating in open

> surgery for fibroids, IUI, and several IVFs with ICSI. This felt

> like our happy ending. But the hard journey's just begun.

>

> Yuka has been fantastic. We met her and last week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared about this.

>

> Feel isolated from friends in the UK and acquaintances in LA where

> we now reside (we're British). We'll be at Costa Mesa in July.

>

> x

>

[Guest guest]

hey welcome its soooo good u know yuka she is one of my fave mummys on here

allwasy got kind words for anyone and everyone evenif she might b thinking

stupid drs lol i know she does think that coz all of us on here think that

LOL im ellen howe a charger in aus ive got manyu probs and my endo today

said gee ur a coplicated one lol im 22 in june and my main probs r endo and

tummy but ive got hearing issues ad have had cleft lip palate got vision

probs among toher stuff i have a great team of drs and fam to hugs ellen in

aus

>

> ,

> Welcome to the list, WE also did not have any idea. Our daughter was also

> conceived through IVF, and she took us 5 years!

> Life gets easier, and we are all here for you.

> Cathie, mom to 1yr

>

> ************************************** See what's free at

> http://www.aol.com.

>

>

[Guest guest]

Hi ,

Welcome to you, Reuben, and the rest of your family!

I have a 5-year-old daughter, . We knew about her cleft lip in utero,

but that was it. We learned of her other issues over the course of the first

two months after birth. Her geneticist put the pieces together and confirmed

CHARGE at around her two-month birthday. Still, I have to say that " CHARGE "

meant little to us other than an acronym until months later, when we finally saw

how all those individual diagnoses fit together. This list was invaluable in

providing that information and filling in the blanks for us.

It took us a course of five years and three miscarriages to conceive and

carry her to term. Our life with her is certainly not what we had

envisioned--but it's a happy one nonetheless! In time, you will come to see

that happy ending too. The route there may be much different than you imagined,

but the happiness and gratitude will be waiting for you when you get there.

Hugs,

, mom to (5)

http://kauffmanlak.blogspot.com/

---------------------------------

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

similar journeys we're having.. do you think IVF and our ICSI could have

played a part...

>From: NPTQueenie@...

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Newbie, Reuben born 2 May 2007, Yuka fantastic help

>Date: Wed, 30 May 2007 20:57:54 EDT

>

>,

>Welcome to the list, WE also did not have any idea. Our daughter was

>also

>conceived through IVF, and she took us 5 years!

>Life gets easier, and we are all here for you.

>Cathie, mom to 1yr

>

>

>

>************************************** See what's free at

>http://www.aol.com.

>

>

>

[Guest guest]

we did artificial insemination w/ all three ( four, I lost one)

maria

Re: Newbie, Reuben born 2 May 2007, Yuka fantastic help

>Date: Wed, 30 May 2007 20:57:54 EDT

>

>,

>Welcome to the list, WE also did not have any idea. Our daughter was

>also

>conceived through IVF, and she took us 5 years!

>Life gets easier, and we are all here for you.

>Cathie, mom to 1yr

>

>

>

>************************************** See what's free at

>http://www.aol.com.

>

>

>

[Guest guest]

>hi my name is rita i am the gran of caitlyn and the mum of kellie who

is the mum of caitlyn i have confused you allready i just wanted to

say im british and caitlyn is g tube fed and she had a fundiplication

done in dec last year a couple of days before x mass so yes a 2nd year

in hospital on x mass day the fundo changed caitlyns and kellie life it

was the best thing i hope everything has gone fine i would love to talk

to you when you have more time take care

[Guest guest]

Hi there, and Reuben (and family)!

Welcome to the list- a wonderful place to learn, be

heard, share joys (they will happen), vent about the

ridiculous comments people make, learn some more, get

validation, feel a sense of connectedness that I

cannot describe,... etc. Welcome.

Our son Vinny was born on 06/04/05 which means he'll

be TWO YEARS OLD tomorrow! (See? One of the joys I

was referring to!) We had an ultrasound at 19 weeks

and we were told he looked perfectly healthy. Geesh

.... were THEY wrong.

The moment Vinny was born (via scheduled c-section),

we knew something was wrong. He wasn't crying... and

then wasn't breathing. They kept trying to suction

his nose but no one knew he had choanal atresia. The

pediatrician in the OR did suspect CHARGE right away

as Vinny has the typical CHARGE ear. So, within

minutes of his birth, we knew he had trouble breathing

and that his ears were not formed the way typical ears

are formed. He was transferred to a NICU where he

stayed 8 days and they proceeded to tell us that he

was fine and that he DIDN'T have CHARGE nor did he

have choanal atresia. I asked about what looked to me

as a facial paralysis and they said it was probably

Bell's palsy.

Once we transferred him to a different (wonderful and

competent) NICU, they let us have it. Within a few

minutes of his arrival, they let us know that he was

VERY sick. By the next day, he was on a ventilator

and they had the cardiology team assessing him. He

had multiple heart defects. We later learned that he

had bilateral, bony choanal atresia. He spent his

first 3+ months in that NICU and had multiple

surgeries.

So, did we know anything was wrong before his birth?

Nope. At this point, however, I am glad I didn't know

anything.

He is now nearly 2 years old. He wears hearing aids,

is fed via g-tube, sees his cardiologist every 6

months now that everything is fixed and working,

attends 6 therapy sessions per week (PTx2, OTx2,

speech x 2), uses a few verbal words (Dadda, " ut " for

up, " Caca " for his brother Luca, " Nana " for Momma),

knows about 6 signs, is crawling a typical crawl, and

is very close to walking unassisted.

I remember how terrified and overwhelmed and sad we

were. There are times that I still feel that way,

like when he has difficulty breathing and clearing his

secrections. Knowing those fears are there and

respecting them, we are able to enjoy Vinny all the

more.

I hope to learn more about Reuben and your family,

ina, mom to Luca (almost 4) & Vinny (almost 2 w/

cHARgE)

--- cthrn_ddd catherine_lacey_dodd@...>

wrote:

> hi all

>

> Reuben Jack Dodd was born 2 May 2007. We had no

> pre-diagnosis. Is

> that normal?

>

> Drip fed information since his birth about the

> condition, heart

> murmur and large hole, facial palsy on 7th nerve,

> undescended

> testes. A week later Charge syndrome linked the

> conditions. Worst

> day of our lives. 6 year battle to conceive

> culminating in open

> surgery for fibroids, IUI, and several IVFs with

> ICSI. This felt

> like our happy ending. But the hard journey's just

> begun.

>

> Yuka has been fantastic. We met her and last

> week after an

> introduction via my best friend in the UK.

>

> 31 May - Gtube and fondiplication - am very scared

> about this.

>

> Feel isolated from friends in the UK and

> acquaintances in LA where

> we now reside (we're British). We'll be at Costa

> Mesa in July.

>

> x

>

>

________________________________________________________________________________\

____

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for

today's economy) at Yahoo! Games.

http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow

[Guest guest]

thanks... that's very reassuring...

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Newbie, Reuben born 2 May 2007, Yuka fantastic help

>Date: Sat, 02 Jun 2007 18:56:22 -0000

>

>

> >hi my name is rita i am the gran of caitlyn and the mum of kellie who

>is the mum of caitlyn i have confused you allready i just wanted to

>say im british and caitlyn is g tube fed and she had a fundiplication

>done in dec last year a couple of days before x mass so yes a 2nd year

>in hospital on x mass day the fundo changed caitlyns and kellie life it

>was the best thing i hope everything has gone fine i would love to talk

>to you when you have more time take care

>

>

[Guest guest]

thanks... that's very reassuring...

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Newbie, Reuben born 2 May 2007, Yuka fantastic help

>Date: Sat, 02 Jun 2007 18:56:22 -0000

>

>

> >hi my name is rita i am the gran of caitlyn and the mum of kellie who

>is the mum of caitlyn i have confused you allready i just wanted to

>say im british and caitlyn is g tube fed and she had a fundiplication

>done in dec last year a couple of days before x mass so yes a 2nd year

>in hospital on x mass day the fundo changed caitlyns and kellie life it

>was the best thing i hope everything has gone fine i would love to talk

>to you when you have more time take care

>

>

[Guest guest]

Hi

Way behind with emails here over 268 threads (been away) so belated welcome

to the listserv. I'm glad meeting Yuka and was good. Also I look

forward to meeting you at the conference. Hopefully a passed my mobile

no. to you.

Simon

[Guest guest]

hi and thanks.... pls remind me (I have in the number in my emails but

easier to ask again.. rather a lot of messages hey!)

thanks very much for putting me in touch with Yuka.. she is a true Godsend,

like my other Godsend a back home... we met.. she's fantastic and

is so inspiring... we're mtg again tonight at shift change

Reuben had his Gtube last night... it's distressing but I know it's the

first stage to bringing him home... I so hope he can learn to manage his

oral secretions otherwise I guess it's a trac for him.

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Re: Newbie, Reuben born 2 May 2007, Yuka fantastic

>help

>Date: Mon, 4 Jun 2007 22:27:01 +0100

>

>Hi

>

>Way behind with emails here over 268 threads (been away) so belated welcome

>to the listserv. I'm glad meeting Yuka and was good. Also I look

>forward to meeting you at the conference. Hopefully a passed my mobile

>no. to you.

>

>Simon

>

>

>

[Guest guest]

yuka nos how i feel bout her eyuka wher er uuuuuuuuuu

>

> hi and thanks.... pls remind me (I have in the number in my emails but

> easier to ask again.. rather a lot of messages hey!)

>

> thanks very much for putting me in touch with Yuka.. she is a true

> Godsend,

> like my other Godsend a back home... we met.. she's fantastic and

>

> is so inspiring... we're mtg again tonight at shift change

>

> Reuben had his Gtube last night... it's distressing but I know it's the

> first stage to bringing him home... I so hope he can learn to manage his

> oral secretions otherwise I guess it's a trac for him.

>

>

>

> >From: " simon howard "

simonthoward@...

> >

> >Reply-To: CHARGE

> >To: CHARGE

> >Subject: Re: Re: Newbie, Reuben born 2 May 2007, Yuka fantastic

> >help

> >Date: Mon, 4 Jun 2007 22:27:01 +0100

> >

> >Hi

> >

> >Way behind with emails here over 268 threads (been away) so belated

> welcome

> >to the listserv. I'm glad meeting Yuka and was good. Also I look

> >forward to meeting you at the conference. Hopefully a passed my

> mobile

> >no. to you.

> >

> >Simon

> >

> >

> >