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Prayers Needed !

I am soo glasd he is getting well and that you found out what the problem was! My 5 year old is severly lactose intolerant but we were lucky to find out when he was 5 weeks old. He did have to have some surgery but was back to being a chunker by 3 months old!

Its gets easier to watch thier diet but at first it can be hard to remember which fruits have lactose and bread, man, I had to learn to make bread for him and although I can cook with the best Im not a good baker so we had lots of burned bread at first lol
 
New Things to learn.

His doctor says he needs to eat mainly carbs. Hold the meats, and veggies, and fruits for a while until we can figure out just which ones he can handle.
He, says he is feeling "yuchy" right this second, but I think he is just tired.
It has to be really hard on a little guy to have to be still for so long. 6 days
is a really long time to be in the hospital.
But tonight we get to sleep at home. Thank goodness.

Ginger
 
Ginger, Im just so glad he is now home, that has to make you all feel a lot better!

It is hard with the foods, I had it much easier since Cody was a baby and we had never started foods that had to be taken away or at least not that many since some were later tried and had to be taken.

In our case he can eat and does well with green beans, black eye peas, pintos, kidney beans and potatoes. Corn, green peas and limas are no good for us. As well as no fruit other than watermelon and oranges very rarely.

He eats mainly chicken & turkey for his meats, very little pork and very little to no red meat.

He drinks lactose free milk and I make all of his bread and jello with the lact free milk. He also has lact free cheese and pure chicken hotdogs (you can usually find those at the expensive deli supermarkets and I buy a few packs and freeze them in sets of 2 for him to have).

He does eat pizza, but I buy those pizza kits and make the crust with lacto free milk and only add lacto free cheese and a little ground turkey to his with only a dab of the tomato sause so his looks like ours as much as possible.

You will find foods that agree with him wonderfully and some that will not. Its not always easy but its probably alot healthier that alot of us eat so its not all that bad.

Hang in there, things will get better!
 
Thank You, Wendy. It is a relief to know that there are
others that are going through the same things and I am
not alone. I have faith and I know that things will work out well.
As Mom's we just keep going.

Ginger
 
Ginger, if you ever need anything just let me know, even though we are pretty far apart it can help knowing that someone else is out there even if its just to listen!
 
Settling In Again

Westley, has started to settle in a bit now. I know he
is getting tired of us telling him the doctor says you
cannot have this and that.
Any suggestions on juice type drinks? Right now we are giving
him flavored pedilite, and this seems to satisfy him.
But any suggestions are welcome.
They said he can have sherbert instead of ice cream and
he seems okay with that, but even that must be limited.
He loves yougert, but that is out for at least a few months.
We are trying to get his genetics test rerun. He was diagnosed at
birth with galactosiema a genetic defect that does not allow for him to break
down certain protiens. However they said since he had 25% of the
enzyme he would develope the rest required by the time he was 2.
Well, we took thier word for it and I guess we were wrong.
It, seems to take an act of congress to get the military to run
these test since we are retired military. If we were active duty they would not balk so much, but after you retire they do not figure on having
to care for a small child. Or so it seems.
Just venting, I guess. We will accomplish it in time. I really would like
to know if this latest illness is connected to the diagnosis at birth, and maybe he has not developed the enzymes as they thought he would.
Just a lot of maybes at this time.

Thanks, for your support, Ginger
 
Ginger,

Cody drinks Crystal Light or the generic versions of it, they don't have alot of flavors but its works for him and he likes it.

The latest illness could be connected but I have no idea, Jim O may be able to help with some of that because of his medical background (not sure what area his expertise is in though).

With Cody he was lactose intolerant from birth and he had severe vomiting from about day 8. I was told everything from I was feeding him too much as a new mom to its just spit up and that I was exaggerating the amount of vomiting. By the time his intolerance was found at 3 weeks he was really sick and had developed pyloric stenosis and had to have surgery at 5 weeks to correct the valve.

I was told that children can grow out of lactose intolerance and that some it takes time to develop. He has not grown out of it and our 3 year old daughter is starting to show signs of a mild intolerance. If she drinks more than 16 ounces of milk a day she gets diarrhea and sometimes severe gas and gas pains. So they are having me make a diary of her milk intake and daily symptoms before we decide if its an intolerance or food allergies.

Sorry I can;t be of more help but you can try the Crystal Light, it works really well for us!
 
Supplemental digestive enzymes (fungal, not pancreatic) will alleviate the symptoms of inadequate enzyme function. I would put him on a children's chewable enzyme formula and see if it helps.
 
Vomiting again

:bawling:

West, had a bad night and vomited a few times. We found out
that our 18 yr old, felt sorry for him and gave him some (25+-)
gummy worms. AAAAAAAAAHHHHHHHHHHH sugar !
And his sister gave him mac& cheese (milk).
I had to sit everyone down and re-explain what is okay and what is not.
Our goal, right now is to stabalize him and then get his genetics tests
re-run. We will have to go through the genetics counseling to tell
us what his needs and limitations are going to be or if possible
that the glactosemia has resolved.
Hopefully now that I have threatend the older kids with death
if they "feel sorry" for thier brother and give him things that are
forbidden he will settle a bit better.
They are 16 years and 18 years old I would hope they would understand.
Thanks for your prayers, they help.

Ginger A.
 
ahh thats rough, we have a candy shop here that sells all kinds of sugar free candy, Cody didn't really like it at first but he got used to it. If you can't find a shop near you I can get a couple of the sample bags and mail down to you.

I hope all of his test are pain free and helpful, there is only so much we can do to help until we know all of the facts.

I get the mac n cheese thats 3 for $1 and when I make it, I serperat some of it out I put lactose free cheese on his, little things like that can allow them to eat what they want and it not be harmful.

You will get everyone on the bandwagon, it just takes time for everyone to realize how much the little things can hurt them.
 
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