Re: Chat - Thoughts and Meanderings

[Guest guest]

,

I wish I could say that the denial and grief go away, but they rear

their ugly heads from time to time. I go through so many stages of

these feelings. Each time Max has a major illness or issue, they

pop up again. Thinking of Max graduating from high school next year

brings them on.

What I have learned to do is to deal with them in a healthier

manner. I don't spend a lot of time crying or fretting anymore. I

still panic at times, but that is normal when I know there is an

issue with my child and I can't get a doctor's appointment with the

right specialist. Most of the time, however, I am able to talk it

through and move on. Or I try not to think about the issue, like

graduating, because he's going to no matter what and I still have a

year and a half to " worry. "

You are going through a complicated issue with Ian right now. You

got hit right between the eyes with it. This blood sugar thing is

scary and worrisome. I hear you. And, as I said in my email to

you, I would not be the least bit surprised if Ian winds up with a g-

tube. It just may be necessary to help him through the night and to

keep him stable.

Let me know if you hear from Dr. H. As I also told you, she is not

great with answering emails unless there is a true emergency. But

keep on trying. You will get through eventually.

Jodi Z

[Guest guest]

H,

I just have to say after reading your posts since I've found the group that

you seem awesome. Your strength,fears,courage and best of all the positive

attitude and the smiles you bless everyone with on the list is great! I hope all

the best for you and your family and THANKS:)

Smiles,

Reah and Chloe:)

advocate22003 wrote:

Here I am again. Back to my thoughts and meanderings. You can

always tell when something is going on in my life <grin>.

My DH and I sat here this morning after reading a low blood sugar

and we started discussing Ian's condition. We both came to the

conclusion that although we have gradually " come out " of denial - we

are really now starting to face the reality of RSS and the realm of

issues that face us. I'll quote my husband " we have had our head

buried in the sand for quite some time " . He couldn't have said it

any better. Every time I think I'm out of the denial phase - I find

that something brings me back out of denial - when I didn't think I

was actually there!

Denial and Grief are strange concepts for me. For one, I don't like

them and two - they are a waste of my time. But, fortunately, I

love a challenge and I'm determined to move forward and accept the

responsibilities that continually face me day-to-day. I will ALWAYS

do the best for my children and I will fight and work through these

nasty feelings as long as I live!

Thanks for reading.

- H

[Guest guest]

Reah! I'm not sure what to say! Maybe thank you would be

appropriate! <Big Grin> You are too sweet. We are certainly happy

to have you aboard and I'm equally happy to know that you have found

a place here that you feel comfortable with. I have made some

wonderful friendships here and the bonds that seem to emerge here

are equally comforting. You know - I think the fact that we all

have something in common with our children just makes those

friendships more special. Friends outside of this group - in " real

life " (neighbors, etc.) just do not seem to have the understanding

of what we deal with (most of them try though) and it can be quite

frustrating trying to explain to them the daily worries and fears

that we face on a continuing basis. But, here you can feel a sense

of understanding, empathy and concern on everyone's part - and those

feelings are not fake. There are so many wonderful people on this

listserve.....aren't we LUCKY?! <Big Grin>.

Reah - our best to you and your family. Look forward to speaking

with you more!

- H

> Here I am again. Back to my thoughts and meanderings. You can

> always tell when something is going on in my life <grin>.

>

> My DH and I sat here this morning after reading a low blood sugar

> and we started discussing Ian's condition. We both came to the

> conclusion that although we have gradually " come out " of denial -

we

> are really now starting to face the reality of RSS and the realm

of

> issues that face us. I'll quote my husband " we have had our head

> buried in the sand for quite some time " . He couldn't have said it

> any better. Every time I think I'm out of the denial phase - I

find

> that something brings me back out of denial - when I didn't think

I

> was actually there!

>

> Denial and Grief are strange concepts for me. For one, I don't

like

> them and two - they are a waste of my time. But, fortunately, I

> love a challenge and I'm determined to move forward and accept the

> responsibilities that continually face me day-to-day. I will

ALWAYS

> do the best for my children and I will fight and work through

these

> nasty feelings as long as I live!

>

> Thanks for reading.

>

> - H

>

>

>

>

>

>

>

[Guest guest]

Jodi - thank you so much for your posts. They mean SO much to me

(as you know). I think what gets to me is the overwhelming feeling

I get and then my brain gets all foggy and I feel like I can just

sleep for days. After that, I usually go back to " normal "

(although - is that good ? LOL) Anyway, back to the foggy part - I

know that just means my brain is on overload and won't take in

anymore. But, sometimes it comes during a time I need to use my

brain and I literally have to fight through it to keep going.

As far as getting a response from Dr. H. I figured since all this

sickness stuff occurred - it would probably benefit her to have more

information. So, I'm going to wait until I at least have 5 days and

by then - Ian will be feeling better as well. It will be

interesting to see where his blood sugars are as his body mends.

I'm not saying he won't need a G-tube though - I think through all

the sicknesses that we will undoubtedly face through the winter - it

would be a wise decision. Since it would seem from what

I'm " reading " about blood sugars - it seems to occur more around

this age and although he did do well around the time of the

convention - I did " notice " a bit of changes in him around the

September time-frame. I will say though - I've eliminated M & Ms

out of his diet. I was using them for " fat " intake after meals -

but, he started asking for them constantly and when we were in the

hospital and he was getting any - I finally broke him of

this " habit " .

I'm rambling. Thanks again Jodi. I VERY much appreciate your

discussing this all with me.

- H

>

> ,

>

> I wish I could say that the denial and grief go away, but they

rear

> their ugly heads from time to time. I go through so many stages

of

> these feelings. Each time Max has a major illness or issue, they

> pop up again. Thinking of Max graduating from high school next

year

> brings them on.

>

> What I have learned to do is to deal with them in a healthier

> manner. I don't spend a lot of time crying or fretting anymore.

I

> still panic at times, but that is normal when I know there is an

> issue with my child and I can't get a doctor's appointment with

the

> right specialist. Most of the time, however, I am able to talk it

> through and move on. Or I try not to think about the issue, like

> graduating, because he's going to no matter what and I still have

a

> year and a half to " worry. "

>

> You are going through a complicated issue with Ian right now. You

> got hit right between the eyes with it. This blood sugar thing is

> scary and worrisome. I hear you. And, as I said in my email to

> you, I would not be the least bit surprised if Ian winds up with a

g-

> tube. It just may be necessary to help him through the night and

to

> keep him stable.

>

> Let me know if you hear from Dr. H. As I also told you, she is

not

> great with answering emails unless there is a true emergency. But

> keep on trying. You will get through eventually.

>

> Jodi Z

>

[Guest guest]

H,

Is it bad to give our children snack cakes or ice

cream,even m & m's evryday for more calories?Not in the

replace of nutrition ofcourse.Is this what causes our

kids sugar problems?You may have answered this once

already for me but like you said my brain is foggy

today.lol:)I work 7p-7a so chloe doesn't have to go to

daycare and her dad works during the day so my stretch

of 3 days without rest and tring to get all the info I

can to help my darling child,sometimes I feel like I

take in nothing somedays.Now to the question. Do you

belive I should get chloe's sugars checked? When do

you see that they need to be checked the most?

Mornings and through sickness when they don't

eat?Chloe doesn't have to be sick not to eat.Also are

some foods problematic for our childrens sugars,sorry

I'm not very educated on sugars. thanks:)

In faith,

Reah and Chloe " )

--- advocate22003 wrote:

> Jodi - thank you so much for your posts. They mean

> SO much to me

> (as you know). I think what gets to me is the

> overwhelming feeling

> I get and then my brain gets all foggy and I feel

> like I can just

> sleep for days. After that, I usually go back to

> " normal "

> (although - is that good ? LOL) Anyway, back to the

> foggy part - I

> know that just means my brain is on overload and

> won't take in

> anymore. But, sometimes it comes during a time I

> need to use my

> brain and I literally have to fight through it to

> keep going.

>

> As far as getting a response from Dr. H. I figured

> since all this

> sickness stuff occurred - it would probably benefit

> her to have more

> information. So, I'm going to wait until I at least

> have 5 days and

> by then - Ian will be feeling better as well. It

> will be

> interesting to see where his blood sugars are as his

> body mends.

> I'm not saying he won't need a G-tube though - I

> think through all

> the sicknesses that we will undoubtedly face through

> the winter - it

> would be a wise decision. Since it would seem from

> what

> I'm " reading " about blood sugars - it seems to occur

> more around

> this age and although he did do well around the time

> of the

> convention - I did " notice " a bit of changes in him

> around the

> September time-frame. I will say though - I've

> eliminated M & Ms

> out of his diet. I was using them for " fat " intake

> after meals -

> but, he started asking for them constantly and when

> we were in the

> hospital and he was getting any - I finally broke

> him of

> this " habit " .

>

> I'm rambling. Thanks again Jodi. I VERY much

> appreciate your

> discussing this all with me.

>

> - H

>

>

> >

> > ,

> >

> > I wish I could say that the denial and grief go

> away, but they

> rear

> > their ugly heads from time to time. I go through

> so many stages

> of

> > these feelings. Each time Max has a major illness

> or issue, they

> > pop up again. Thinking of Max graduating from

> high school next

> year

> > brings them on.

> >

> > What I have learned to do is to deal with them in

> a healthier

> > manner. I don't spend a lot of time crying or

> fretting anymore.

> I

> > still panic at times, but that is normal when I

> know there is an

> > issue with my child and I can't get a doctor's

> appointment with

> the

> > right specialist. Most of the time, however, I am

> able to talk it

> > through and move on. Or I try not to think about

> the issue, like

> > graduating, because he's going to no matter what

> and I still have

> a

> > year and a half to " worry. "

> >

> > You are going through a complicated issue with Ian

> right now. You

> > got hit right between the eyes with it. This

> blood sugar thing is

> > scary and worrisome. I hear you. And, as I said

> in my email to

> > you, I would not be the least bit surprised if Ian

> winds up with a

> g-

> > tube. It just may be necessary to help him

> through the night and

> to

> > keep him stable.

> >

> > Let me know if you hear from Dr. H. As I also

> told you, she is

> not

> > great with answering emails unless there is a true

> emergency. But

> > keep on trying. You will get through eventually.

>

> >

> > Jodi Z

> >

>

>

>

>

>

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[Guest guest]

Reah,

Snack cakes and ice cream are okay, but only when they are used at

the right times of day. These foods are full of sugar and fat.

Sugar causes the spike of blood sugar and fat delays emptying and

creates a full feeling. The foods like you describe are best given

after a meal, preferably in the early evening or right after lunch.

Snacks really should be more complex carbohydrates and protein.

I know, I know. Easier said than done. You are trying to get your

child to eat ANYTHING and all she wants is chocolate ice cream.

That's okay. But not every time. You want to find some sort of

balance. Just don't give the ice cream right before a meal. Use it

as an incentive to eat that meal, or at least a portion of it.

Look, it's not easy. Our kids can be so picky and frustrating. Try

to lean more towards cracker and cheese or peanut butter. Try a

trail mix. Cream cheese on whatever. You can get very creative

here. Try to save the sugary stuff for the appropriate times. But

know that sometimes those M & Ms are necessary to do the trick. It's

a complicated " game " of trying to figure out what to give and when.

Jodi Z