Re: Eating Update and Thanks

September 11, 2002

Once he is tube fed there is no need to thicken the formula with the rice,

so I don't think they will put him back on it even in the hospital.

I hope the surgery went well and that he feels better soon. Once that

initial post-op pain is gone, I think the three of you will enjoy some

calmer days.

Kim

----------

>

>To: CHARGE

>Subject: Eating Update and Thanks

>Date: Wed, Sep 11, 2002, 1:44 PM

>

> I just wanted to send a gigantic thank you to all the people that

> have given us advice and shared knowledge over the last few weeks. It

> has helped us tremendously.

>

> had a G-Tube put in this morning. He was bottle feeding, but

> just not taking that much and it didn't seem that pleasurable,

> especially with the n/g tube in and the small esophagus from the TEF

> repair. will most likely come home Sunday or Monday and we can

> continue to coax him into bottle feeding by making it an enjoyable

> activity without the pressure... in a nice environment.

>

> The decision to put him on the g-tube got a lot easier yesterday when

> they took the n/g tube out for a couple hours and during that time he

> controlled his secretions perfectly and seemed so much happier. He is

> up to 6lbs 4oz and has been gaining about an oz a day! We are proud

> of him.

>

> Interestingly enough, we are pretty convinced that the rice cereal

> they are adding to his milk is causing a lot of gas and constipation.

> Our doctor is reluctant to take him off it but soon we will have

> control and I'll toss that stuff out the window... as long as the

> reflux stays minimal.

>

> Sincerely,

> Bo - 's Dad (6 week charger)

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

September 11, 2002

Once he is tube fed there is no need to thicken the formula with the rice,

so I don't think they will put him back on it even in the hospital.

I hope the surgery went well and that he feels better soon. Once that

initial post-op pain is gone, I think the three of you will enjoy some

calmer days.

Kim

----------

>

>To: CHARGE

>Subject: Eating Update and Thanks

>Date: Wed, Sep 11, 2002, 1:44 PM

>

> I just wanted to send a gigantic thank you to all the people that

> have given us advice and shared knowledge over the last few weeks. It

> has helped us tremendously.

>

> had a G-Tube put in this morning. He was bottle feeding, but

> just not taking that much and it didn't seem that pleasurable,

> especially with the n/g tube in and the small esophagus from the TEF

> repair. will most likely come home Sunday or Monday and we can

> continue to coax him into bottle feeding by making it an enjoyable

> activity without the pressure... in a nice environment.

>

> The decision to put him on the g-tube got a lot easier yesterday when

> they took the n/g tube out for a couple hours and during that time he

> controlled his secretions perfectly and seemed so much happier. He is

> up to 6lbs 4oz and has been gaining about an oz a day! We are proud

> of him.

>

> Interestingly enough, we are pretty convinced that the rice cereal

> they are adding to his milk is causing a lot of gas and constipation.

> Our doctor is reluctant to take him off it but soon we will have

> control and I'll toss that stuff out the window... as long as the

> reflux stays minimal.

>

> Sincerely,

> Bo - 's Dad (6 week charger)

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

September 11, 2002

Thanks Kim. Our doctor did say she would keep the rice so he won't

reflux still with the g-tube. We didn't have a fundoplication done,

so maybe that's why. She seemed to not really believe me about the

rice, so i can wait a couple days to do it on my own. I'm very tired

of the NICU as you can imagine. Time to get the boy home and be happy.

> Once he is tube fed there is no need to thicken the formula with

the rice,

> so I don't think they will put him back on it even in the hospital.

>

> I hope the surgery went well and that he feels better soon. Once

that

> initial post-op pain is gone, I think the three of you will enjoy

some

> calmer days.

>

> Kim

>

> ----------

> >From: " Bo " <bo@c...>

> >To: CHARGE@y...

> >Subject: Eating Update and Thanks

> >Date: Wed, Sep 11, 2002, 1:44 PM

> >

>

> > I just wanted to send a gigantic thank you to all the people that

> > have given us advice and shared knowledge over the last few

weeks. It

> > has helped us tremendously.

> >

> > had a G-Tube put in this morning. He was bottle feeding, but

> > just not taking that much and it didn't seem that pleasurable,

> > especially with the n/g tube in and the small esophagus from the

TEF

> > repair. will most likely come home Sunday or Monday and we

can

> > continue to coax him into bottle feeding by making it an enjoyable

> > activity without the pressure... in a nice environment.

> >

> > The decision to put him on the g-tube got a lot easier yesterday

when

> > they took the n/g tube out for a couple hours and during that

time he

> > controlled his secretions perfectly and seemed so much happier.

He is

> > up to 6lbs 4oz and has been gaining about an oz a day! We are

proud

> > of him.

> >

> > Interestingly enough, we are pretty convinced that the rice cereal

> > they are adding to his milk is causing a lot of gas and

constipation.

> > Our doctor is reluctant to take him off it but soon we will have

> > control and I'll toss that stuff out the window... as long as the

> > reflux stays minimal.

> >

> > Sincerely,

> > Bo - 's Dad (6 week charger)

> >

> > Membership of this email support groups 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@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

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

> >

September 12, 2002

We kept Bryce on the rice cereal after his g-tube for weight gain puoses and

I think it helped a lot. He never had a problem with weight as many Chargers

do. That could be coincidental but we gave him the rice cereal through his

g-tube for a couple of years. The only problem is that it would tend to clog

the feeding pump if you need to use a pump.

Deedee

September 12, 2002

We kept Bryce on the rice cereal after his g-tube for weight gain puoses and

I think it helped a lot. He never had a problem with weight as many Chargers

do. That could be coincidental but we gave him the rice cereal through his

g-tube for a couple of years. The only problem is that it would tend to clog

the feeding pump if you need to use a pump.

Deedee

September 12, 2002

We kept Bryce on the rice cereal after his g-tube for weight gain puoses and

I think it helped a lot. He never had a problem with weight as many Chargers

do. That could be coincidental but we gave him the rice cereal through his

g-tube for a couple of years. The only problem is that it would tend to clog

the feeding pump if you need to use a pump.

Deedee

September 12, 2002

Just a side note. My son, , has a J-tube. I agree that the childern do

so much better once the NG or (in our case NJ) tube is replaced in the

stomach or intestine. However, my son still needed the formula thickened.

Not only to help prevent the reflux but to gain weight. Slowly trying to

introduce the bottle. He likes pear juice but no way will he take Nutramigen

formula (which goes in the tube). He is 11 months old and gaining.

We were at the endocrine doctors this past week and now concerns are with his

height. Do any of you have experience with, or lack of, the growth hormone.

Any info appreciated.

God bless,

Lynda-mom charger

dean2313@... or @yahoo.com

September 12, 2002