Re: Abby lost weight...ugh!!!!

October 18, 2005

Amy - I saw those beautiful pictures of Abby yesteray actually!

Thank you for posting them.

I'm so sorry to hear of your stresses. If I don't get enough sleep -

I'm a bear, crocodile and witch all mixed-up into one. It's not

pretty. So, I do understand your lack of sleep issues.

Let me ask you a question. Is it really necessary to get Abby up to

take her to the bathroom? If she's wearing a pull-up - I think she

will be okay through the night. It's okay mom - to not worry about

the potty training thing right now. You have ENOUGH to worry

about. Stick to what you need to which is getting her weight up. I

would let her pee until her heart is content at night. I buy these

overnight diapers for (he's 40 lbs) and he usually doesn't

even pee in them and then we use them the next day. But, if he

does - he will not leak because they are extra thick. If you can't

find any - let me know - I would be MORE THAN HAPPY to mail you a

package to see if you like them. Trust me - they are awesome.

Also, does your 3monthold cry when ready for a feeding? I would try

to arrange it to feed the baby first then go right into Abby's room

and feed her while she is sleeping. Even if this means you need to

get them on the same schedule. That will hopefully add a little

time to your nights because they are eating around the same time.

Once the baby is older - he/she (?) will eat more quickly and this

should happen really soon - around 4 months they can usually suck a

little faster. Oh, and maybe baby doesn't get what baby wants right

now. Baby's CAN be trained to take a bottle - you are up now

anyway - this might be a good time to get the baby trained to take

one from daddy. If my words seem harsh - they are not meant to be -

I'm honestly just trying to help.

I hope my guidance does give you some ideas. We are all here for

you to vent. You can vent every minute of every day if you need

to. Okay?

You are doing a fantastic job. You may have to demand some naps on

the weekends at least. Maybe someone can help with the baby while

you take a nap or two during the day? My best to you always.

Thinking of you.

Hugs.

- H

>

> The frustration level is overflowing right now. Abby lost one

pound

> over the last month. She is being tube fed along with eating

> normally and we lose weight. Ugh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now

> we have a new plan of action: 1)More tube feedings through the

day-

> 5; 2)tube feedings at night 1 or 2, not a pump because we tried

that

> and she failed miserably with it-I will be up doing them; 3)Abby

> still wears a pullup at night-now I am to wake her up every two

> hours at night to take her to the bathroom; 4) Continue with the

> growth hormones.

>

> I am about to go out of my mind. I have a 3 month old baby that

is

> still eating through the night. The baby will not take a bottle

> only mommy, lucky me. What sleep I was getting before today just

> got diminished down to nothing. The tube feedings I am only able

to

> do. Daddy did it twice and did not pay attention to what he was

> doing (he was watching sports on tv) and she got a lot of air in

her

> belly. Abby has since fired daddy from tube feedings. Daddy is

in

> charge of shots only.

>

> Abby is in pre-K three days a week from 8:30-1:30p. She is to eat

> lunch at school, but now we are pulling her out before lunch to

get

> in the tube feedings. She does not want to be fed at school yet.

> She knows as she gets older that will have to happen.

>

> Sorry to vent so much. Abby was doing well with growing and today

> was a big blow. She weighs 24.3 pounds and is 36 inches tall.

She

> is getting teased at school already. I wish there was a magic

> potion I could make and everything would be better but there is

> not. Luckily I can vent to you all and you understand. I am

trying

> to be the support person for others who live close to us that have

> children with RSS, but right now I am falling apart. There is not

a

> single person we associate with that understands. However, they

all

> want to help but they do not know what to help with and honestly I

> do not either.

>

> Thanks for listening!! I did post new pictures of Abby yesterday.

>

> Amy (mom to Abby-RSS, Tyler-nonRSS, and -nonRSS)

>

October 19, 2005

Amy,

I feel your frustration. Maybe you can clue me in, I don't

understand. Why would you want to wake her every two hours for the

bathroom? is 5 1/2 and still wears a pullup to bed. We take

him to the bathroom at 10:30 at night and that is it until morning.

Sometimes he is wet, sometimes he is dry. He is on the pump

overnight, so of course he needs the bathroom. Dr H said that he is

too small to stay dry most of the time at night with the formula he

is getting.

As for tube feeds v the pump at night, why did the pump fail? Was

it at too high a dose? gets 48 ml/hr from 8:30 pm to 6:30

am. This is fine when he is healthy, but too much when sick. When

he is sick, we cut back to 40 ml/hour.

Besides the pump overnight, gets a 60 ml bolus around 8 pm.

We mix his evening meds in with it.

I see Abby's weight and height, wow old is Abby now? What were you

doing at night before this new change? Maybe you can juggle things

so you don't have to get up at night.

Feel free to post back or email me directly.

Judith, Steve, (RSS) and (non RSS) 5 1/2 year old twins

>