Re: hello again everyone

[Guest guest]

The exact name has left me but I believe that it was something of the

sort. Colgan did ok with it. I though he was going to have a cow when

they strapped him to that bed though for an hour. He only cried a

little and then fell asleep. He was so warm in all the covers. Shoot I

would have liked to have been strapped in there with him. By the time

he was done my feet were numb they were so cold.

Ashauna

[Guest guest]

Thanks for asking about Nick's birthday. We took him and his friend

to Red Lobster for " all you can eat " crab.

At about midnight, we had a big storm and lost the electricity till

3am. So... The amps didn't work and I got plenty of sleep.

Abby spent the night with me last night. She is SO CUTE! She is

such an easy baby. She goes to bed on her own. She says, " ni-ni "

and then crawls into bed and covers up. My children were never that

easy!

We have cut Abby's enzyme dose in half and she is still only having

one solid poop per day. Doe this mean that we were giving her too

many before?

Gale

Grandma to Abby (20 months w/CF)

> Gale,

> How fun. Did you all have a great Birthday party. I am having

a

> time keeping up with these posts. Some nights I do not get on until

> midnight and then I can only read a few.

> My oldes Maxwel is turning 5 October 27 and he has informed me

that

> he wants a motorcycle. I told him that he had to learn how to ride

his

> peddle bike without training wheels first. These boys even this

young

> are trying to kill themselves.

> How did Nick like his guitar and amp. I dread that day. I

know it

> will come I can hear it already. Have fun and buy ear plugs huh!!!

>

> Lots of love to you and your family

> How is your grand baby good I hope.!

[Guest guest]

Ashauna,

I completely understand about the bad food days. about a month or so ago,

wouldn't eat a thing. It was awful. She had to go back on the reglan to

help her stomach empty more quickly. She still is not eating enough to fill a

bird. just a nibble here and a nibble there. The only thing I can depend on

now is her " chocky mook " before bedtime. I am a bit worried about our clinic

appointment on Tuesday and her weight. I really do not want to increase the

frequency or the volume of her feeds but if she hasn't gained I think that they

will increase one or the other, maybe both.

I would think that the military docs would just be better than the regular docs

about all this, after all they are taking care of the families of the people who

are defending our country, the least they could do would be to send you to a

feeding specialist for Max after 4 years of not being on the charts. Maybe you

could ask about for one?

Oh, well. I have to go figure out what I am doing for dinner (not that

will eat it anyway)

Re: Re: hello again everyone

Thanks ,

I am so ready to get on with this whole process. My little Colgan

is just so small. I know not as small as some but to me he just needs a

lot of weight. I think that I might cry the day that he reaches

anywhere on that chart. Almost 8 months and seems like we are just

working to stay at the step on the hill we are on. Not progressing

anywhere. There are so many aspects of this disease that just make me

want to scream. SO sorry for sounding so negative I am just so worried

about him. I also worry about my oldest to this day he is still only at

the 5th percentile in weight and do you know that these stinking

Military docs will not do anything to help me get weight on him. I have

been begging for 4 years now. Needless to say I have had it with the

poops and the trying to force food down by boys just to get them to

maintain weight forget that part for right now just keep it on is

nearly impossible.

Anyways as you could probably guess I have had a rough day in the

food area.

Love and hugs to you all

Ashauna

[Guest guest]

,

Good luck at your clinic visit. We also go tuesday next week. I

dread as well what they are going to tell me.

As far as the military docs go it is very hit and miss. Sometimes

you can have a good one and then others just a terrible one. The thing

is that they really do not have a lot of experience with dealing with

special needs at all. They are really great when it comes to just

maintaining good health. Throw in a bump or two and they get all

frazzeled about it. I think that it has some thing to do with paperwork

to be honest anything they do takes ten years just to finish the

paperwork. To be honest we have had really good experiences for the

most part just have to put a foot where the sun don't shine every once

in a while to get them going.

I have consulted the head Ped. on base and explained my boys

situations and hopefully we will get the show on the road to getting

them big and fat :-)

Anyways, I gotta go and finish laundry and go to bed have a great night.

Ashauna ( finally at 11:00 pm I have some me time!!!!!!!)

[Guest guest]

Gail,

Solid meaning what? I would assume that she is doing well with

enzymes if she is not having any poblems with loose and really smelly

stools. My son goes like 7 to 8 times a day right now this is very

frusterating because I know his enzymes are not working correctly.

If you were giving her too many the symptoms are almost the same.

More frequent loose, smelly. With my son when he was regulated on

enzymes I could always tell if he had to many because he would get

little sores on his booty because what their body does not need it just

flushes out. Leaving sores like the ones they can get in mouth if

enzyme beads remain. Now that he is all screwy I have no idea if too

many or not enough. I hate it when they get out of wack.

Abby does sound sweet my oldest is really easy to get to bed as

well. I read him a story everynight and a kiss and lights out. Done.

Now Colgan he is another story. it is all in his time!!!!!!!!!!!

Well have a wonderful night I have to get some sleep it is after

mid night here.

Ashauna

[Guest guest]

GOSH, one of my favorite places. POPCORN SHRIMP------ahhhhhhh, to die for

!! :)

Now that wee AMY is one I would just love to squeeze.She sounds so very

precious. I just love these kids. They are such joy...You are blessed & I

KNOW , that you also know that. have a great weekend (sorry about the power

thingy.

LOVE & HUGS< GRANDMOMBEV

Re: hello again everyone

Thanks for asking about Nick's birthday. We took him and his friend

to Red Lobster for " all you can eat " crab.

At about midnight, we had a big storm and lost the electricity till

3am. So... The amps didn't work and I got plenty of sleep.

Abby spent the night with me last night. She is SO CUTE! She is

such an easy baby. She goes to bed on her own. She says, " ni-ni "

and then crawls into bed and covers up. My children were never that

easy!

We have cut Abby's enzyme dose in half and she is still only having

one solid poop per day. Doe this mean that we were giving her too

many before?

Gale

Grandma to Abby (20 months w/CF)

> Gale,

> How fun. Did you all have a great Birthday party. I am having

a

> time keeping up with these posts. Some nights I do not get on until

> midnight and then I can only read a few.

> My oldes Maxwel is turning 5 October 27 and he has informed me

that

> he wants a motorcycle. I told him that he had to learn how to ride

his

> peddle bike without training wheels first. These boys even this

young

> are trying to kill themselves.

> How did Nick like his guitar and amp. I dread that day. I

know it

> will come I can hear it already. Have fun and buy ear plugs huh!!!

>

> Lots of love to you and your family

> How is your grand baby good I hope.!

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------