Back from Convention!

[Guest guest]

Hi Tammy,

I was glad to see your post. I so enjoyed meeting you and your family!

We are looking into seeing the endo that spoke who was from MN. I

figure that way I can kill two birds with one stone, visit my family and

see the doctor.

Hugs from CA,

and LeeAnn

Back from Convention!

Hey Everyone,

I wanted to let everyone know what such a great time we had at the

convention. My husband and I discussed fund raising ideas for next

year's convention most of the way home. We can't wait to go again!

Everyone was so nice and full of information. We met so many

wonderful people.

We got home and have started the process of increasing her

calories. She has to be on the pump 23 hours a day. I found her a

backpack(finally), put it on with the pump installed and well, she

just fell backwards! I felt so bad for her, she wasn't hurt, but

just looked at me like she was saying " mom this isn't going to

happen " ! We have the Zevex Enteralite pump and I don't think she

will be able to carry it. I'm now in the process of trying to get

the Zevex infiniti.

Also, has anyone experienced your local endo. not quite agreeing

with Dr. Harbison's suggestions on treatments? The reason I ask is

that Dr. Harbison wants on 23 hours pump feedings, but my

endo. said that she would rather her be on 12 hour pumps until her 3

month appointment in September and then see how she is doing. The

reason she is saying this is because we just got to the

point that she will eat orally and we don't want her to lose that.

Also, Dr. Harbison suggested putting her on Compleat Pediatric and

my endo. said to talk with my gastro doctor, who is out of town

until next week. I went ahead and got the compleat Pediatric,

because I agree with Dr. Harbison's reason for using it over

Pediasure, however, I am using 1 can of pediasure during the day and

the Compleat Pediatric at night.

Jodi, I can't believe mess you're neighbor left you. Did you have a

talk with him? And, Kim have you found your luggage?

, thanks for playing with so much, he really enjoyed it

and talked alot about on the way home. He said he will

draw you a picture and send it to you!

Tammy

Mom to 20 mos. SGA/ g-tube, fundo, GERD and 6years

[Guest guest]

Hey Kim,

I am glad to see that you and made it home safely. I can't

believe they lost your luggage though! Ugh. It was great to be able

to talk to you and thanks for sharing your pictures and 's

book with me. How did the sightseeing go yesterday with your

friend?? Did you about die in the heat!? )

Talk to you by email,

Jodi R.

> Hi all,

>

> I just wanted to say that we had a great time at the convention & I

enjoyed meeting so many

> more people from the listserve this year! Although we didn't get

the best news in the world

> from Dr. H this time around, it is so comforting being around

people who can truly

> understand everything we go through with our kids on a daily

basis.

>

> We missed the group picture with Dr. Harbison this year, because

wasn't feeling

> well. If anyone got a good picture of the group, I'd love it if

you can send me a copy via e-

> mail! Also, hoping I won't have to ask for this, but the airlines

lost my luggage, & all my

> notes & handouts from the convention were in there, including the

growth chart CDs. Keep

> your fingers crossed for me that my luggage finds its way home!

>

> Kim C.

[Guest guest]

hey kim!!

it was really great to see you and matthew!!! hope your luggage finds

its way home soon!!! just think of it though atleast it was on the way

home and not on the way to convention when it got lost!! i am sure we

can get you gopies of the cd and notes!!

((HUGS))

jodie c

[Guest guest]

Hey Everyone,

I wanted to let everyone know what such a great time we had at the

convention. My husband and I discussed fund raising ideas for next

year's convention most of the way home. We can't wait to go again!

Everyone was so nice and full of information. We met so many

wonderful people.

We got home and have started the process of increasing her

calories. She has to be on the pump 23 hours a day. I found her a

backpack(finally), put it on with the pump installed and well, she

just fell backwards! I felt so bad for her, she wasn't hurt, but

just looked at me like she was saying " mom this isn't going to

happen " ! We have the Zevex Enteralite pump and I don't think she

will be able to carry it. I'm now in the process of trying to get

the Zevex infiniti.

Also, has anyone experienced your local endo. not quite agreeing

with Dr. Harbison's suggestions on treatments? The reason I ask is

that Dr. Harbison wants on 23 hours pump feedings, but my

endo. said that she would rather her be on 12 hour pumps until her 3

month appointment in September and then see how she is doing. The

reason she is saying this is because we just got to the

point that she will eat orally and we don't want her to lose that.

Also, Dr. Harbison suggested putting her on Compleat Pediatric and

my endo. said to talk with my gastro doctor, who is out of town

until next week. I went ahead and got the compleat Pediatric,

because I agree with Dr. Harbison's reason for using it over

Pediasure, however, I am using 1 can of pediasure during the day and

the Compleat Pediatric at night.

Jodi, I can't believe mess you're neighbor left you. Did you have a

talk with him? And, Kim have you found your luggage?

, thanks for playing with so much, he really enjoyed it

and talked alot about on the way home. He said he will

draw you a picture and send it to you!

Tammy

Mom to 20 mos. SGA/ g-tube, fundo, GERD and 6years

[Guest guest]

Tammy,

Dr. H. is probably recommending the 23 hour feeds for a couple of

reasons. One is that she wants her to gain weight and get the catch-

up growth that occurs with the weight gain before you can start gh,

if you choose to go that route.

Another reason is that she probably wants to prevent hypoglycemia,

even if she does not have it, or it has not been diagnosed at this

point. The continuous feeds assure that there is no drop in blood

sugar levels.

What some of us have done to keep our kids interested in eating

orally is stop the feeds about an hour or so before a meal, letting

the child eat until satisfied, and then starting the feeds up

again. It's been awhile since I had to do that with Max, but Judith

has done that with and she is quite an expert on it now.

I hope this helps you a bit.

Jodi Z

[Guest guest]

Hi Tammy,

I wasn't at the convention, so we didn't meet, but I am the Judith

Jodi Z was referring to.

We put in 's gtube when he was 2. At that point, we had

already been through some feeding therapy and had worked very hard

to get to eat orally. Dr H wanted 23 hours feeds but we told

her we didn't want to lose what we had worked for and she agreed

with us.

Our original schedule after placing the gtube was (note I am

starting at night here)

1. Feeding tube overnight from 7:30 pm to 6:30 am.

2. Breakfast at 7:30 (an hour off to get hungry and 1 hour off to

eat).

3. Pump from 8:30 am to 11:30 am

4. Lunch at 12:30 pm (again, 1 hour off to get hungry and 1 hour to

eat)

5. Pump from 1:30 pm to 5:30 pm

6. Dinner at 6:30 (one hour off to get hungry and 1 hour to eat)

We went with this schedule for over a year. As was eating

more orally, we started slowly cutting back the daytime pump.

Now at age 5, our typical (weekend because school is different)

schedule is:

1. Breakfast at 8:30

2. Lunch 12:30

3. Afternoon bolus - around 2

4. Afternoon snack - around 3:30

5. Dinner - 6

6. Evening bolus (with meds mixed in) 8:30

7. Bed/overnight pump - 9 pm to 6:30 am

Also, over time you will be able to increase the volume of the

pump/bolus so you can decrease the time hooked up.

All of this assumes that doesn't have hypoglycemic issues on

a regular basis.

Feel free to email me directly, if you would like more information

on our schedule.

Judith, Steve, (RSS) and (non RSS) 5 year old twins