Re: Salem, and others

[Guest guest]

Hi ,

First of all, you have every right to vent here. If you don't vent

here, where will you vent? You need to be able to feel like you can

come here and let others know how you are feeling and get things off

your chest. Did you feel better sharing your feelings? This site is

for support, and you are entitled to that, also. No different than

anyone else.

I am sorry to hear about all the things going on with now. I

know what you are saying, though, about right when you think

everything is on your side and man, things are really looking better.

Then bam, something else gets thrown your way and smacks you right in

the face and brings you right back down again. I know, I know. I

hate that feeling so much. I feel the same way when I hear about

someone losing their baby or a child has cancer. I feel terrible for

them and I think, gosh I ma so glad that I have here with me,

but I can't help to get caught up in the whole, " Whoa is me " thing,

too. I know as well as you do, that I have been on here several

times, maybe feeling sorry for myself, but mostly feeling terrible

with what all has to deal with. I cathc myself saying, why

us, why , but then in the next second I think, why anyone? Why

this world has to be so cruel sometimes, I don't know. Yes, I know

people say that if there wasn't hardship, we wouldn't appreciate the

good things. But, I am living here in this minute right now, and I

am sorry, but that doesn't make me feel better. The thing that I

hate is when people say, " Well, doesn't know life any

different. " And that is supposed to help me? I am sorry, but that

DOES NOT help me at all.

I am the one in the family, like you, that is primarily responsible

for everything. I make sure gets his meds, vitamins, I

prepare his formula everyday, I start his new feed at night, I clean

and sterilize everything from syringes, to his current feeding bag,

etc. I mean, the list is endless, not to mention taking care of

, plus 4 year old all day long, on top of the little

sleep I get during the night after being up to vent twice a

night (When my husband turns off his alarm clock for the first vent),

and then waking me intermitently. Plus, I mange to clean the

house and do the laundry.....okay, enough of this! )

Anyway, , I just wanted to let you know that we are all here

for you, and that it is okay to vent. Actually, you need to. This

is hard. Let's admit that. But, that doesn't mean that we don't

love our kids. I wouldn't trade for anything. But, I would

give up all the problems. I have found myself saying since

was born, that why can't I have without all the problems.

But, really, I guess the problems are what makes him . It is

just hard and frustrating and we all deal with ups and downs. I am

looking forward to a lot with . I hate that he is attached to

a tube feed 23 hours a day. I will welcome the day that can be

reduced. After a while, the everyday grind gets to me, and some days

are worse than others. I am sure you feel the same way. Please let

yourself feel like you are welcome to get your feelings out here. No

one will think any less of you. You are only human. And, I am sure

others will back me up here, but we are happy to be here for

encouragement.

I am glad to hear that did gain some height and that she

hasn't hit adrenarche yet. , I hope that this post will help

you to feel a little better, because I do know how you feel. It is

frustrating and we feel a little bad when we start to say why me, but

you know, that is the way God made us, I guess. We have feelings and

we can't help to feel bad sometimes.

Take care , and thatnk you for all the help you lend here to

me and to others,

Jodi R.

's momma

IUGR/RSS 20 months old, 14 lbs. 7 oz.

> here, 's mom. I too just read the People Magazine,

> and thought the article on the family who adopted the 25 kids was

> amazing. I normally try not to vent on this listserve. But do

you

> ever have days that you just feel so overwhelmed? I am so tired of

> ensuring that gets her meds every morning and every night.

> And what doctor's appts have we made, what still needs to be done,

> have I missed anything? How is she doing? Who wants to take her

on

> a playdate, do they understand she needs to eat so often? And now

> is selling Girl Scout cookies and is talking about wanting

> to go with her troop on a 3-day sleepaway camp (it wouldn't be

until

> this summer and she will be going into 3rd grade at that point). I

> am trying not to project!

>

> Then we go to New York, brrrr... The great news is that she grew a

> whooping ONE+ inch in the past 3 months!!! This after 3 yrs and 3

> months on GHT! We weren't expecting that. Dr. Harbison originally

> told us that she was putting as 's " target " height the

height

> she should have been had she not had RSS, which would be 5'7 " at

> 75%'tile. We laughed..... Well, is now above the 60th

> percentile. Dr. H says that she can usually tell which parents skip

> giving their kid shots regularly and which ones do not (my husband

> won't ever let us skip a single one, even if we fall asleep -- we

> have missed 4 shots in more than 1100 nights, thanks to my husband).

>

> The other good news is that since adding the Prevacid in addition

to

> the Zantac, and starting the Miralax for the constipation, she

> gained 2+ pounds in the last 3 months (after no weight the prior 9

> months). She is now about 52 inches tall and 52 pounds at just

> turned 8 years old.

>

> Now the bad news. First on Thursday they did the Oral Glucose

> Tolerance Test (OGTT). Not a fun one, bribery indeed was

involved.

> And the results showed " clinical and biochemical hypoglycemia " .

She

> was too low first thing that morning before the glucose was even

> given. Then jumped way up with the glucose drink and within 90

> minutes after, had already fallen way too low again (53). '

>

> Then the next bad news, I guess just cuz it shocked all of us.

> had a gastric emptying test last quarter of 193 minutes

> (stomach normally empties in about 30 minutes or so). But since

she

> was constipated and hadn't gained weight, well, we (including all

> her doctors) automatically assumed that this time, her test results

> would be close to normal -- reflux was gone, weight gain happened,

> constipation was gone.

>

> Well, the GET showed " very little emptying over the 90 minutes...

> using an exponential formula, her emptying rate was 2,575

minutes. "

> This is VERY bad news for us, because of 's hypoglycemia.

If

> the food sits in her stomach, it can't convert to energy, and can't

> help her if she is hypoglycemia. It also means that the solutions

> we use in emergencies can't be truste (glycogen tablets, etc)

> because if we give it to her but at that time, her stomach chooses

> not to empty, her hypoglycemia will only get worse. The fact is

> that there is glucose gel that we can put in her cheek. She

clearly

> has intermittent delayed emptying.

>

> I am tired of all this crap. I know I look at her and she is SOOO

> tall, and doing so well. But I just feel like every time we start

> to think we are almost in the clear, bam, something else happens.

>

> I have to remind myself that this is nothing compared to what

others

> are going through, both with RSS and with others. Our neighbors' 5

> year old daughter Becca was just diagnosed with leukemia at

> Christmas. Criminies, how can I complain.

>

> Anyway. So much to talk about but I have gone on too long here.

> The fact is that 's insulin sensitivity is undoubtedly due

to

> the growth hormone (all the studies are showing that this is a side

> effect) --- the good news is that the studies also show that the

> child's insulin levels will go back to normal within 6 months of GH

> being discontinued.

>

> What we will do about a 3-day sleepaway, I don't know. But we

don't

> have to decide now.

>

> The other good news is that there is NO sign of andrenarche or

> puberty for , yahoo. I was worried because last May her

bone

> age went from being 1 year delayed to only 6 months delayed. (She

> just had another bone age done to check again). But Dr. H thinks

> that the advancement for is simply that her growth is

> getting so near her target height. If she were to go into early

> puberty, it would clearly be a problem for her, but again, no signs

> of it yet.

>

> Thanks for listening. I just spent hours reading and summarizing

> all the studies that have been published on RSS/SGA/IUGR in the

last

> year, and am going to include that summary in the MAGIC

newsletter.

> I will try and post it here as well, and the articles as usual will

> be available through MAGIC free for members.

>

> Bye for now.