How's ?

[Guest guest]

Maureen,

How is doing? I don't remember reading anything lately. About time

for cast removal? Give us an update?

Gail

[Guest guest]

Wow, ask and you shall receive! Sorry, should have finished all my mail

before I wrote. LOL Glad things are looking better.

Gail

[Guest guest]

Hi ,

Congratulations on working it out so could go on the Retreat! What

a wonderful opportunity for her! She's lucky to have you for an advocate!

You'd be surprised how many parents want something for their kids but aren't

willing to be a part of finding a solution to the barriers.

's surgery went well, but was so much more involved than we expected.

He was there 10 long hours and the doctor had to do more than he anticipated.

will be in the spica cast for a total of three months, assuming that

everything heals well. (The cast comes up above his waist front and back and

down to his ankle on the right leg; down to the knee on the left. He is bent

at about a 30 degree angle so he can't sit up and he can't lie down flat. )

After the cast comes off, he will be in a brace " for some time " according to

the doctor. He was in the hospital for 5 days. The first day we were home,

I felt completely overwhelmed and wasn't sure I could do this. A friend of

mine is a pediatric nurse and she came over and helped me to get it together.

Over the last few weeks we have developed a routine that seems to be

working with respect to incontinence issues and moving him from the bed to

the wheelchair and back. He has to be re-positioned every 2 hours. The

second day following surgery before he even left the hospital, he developed a

pressure ulcer (bed sore) on his right heel. I couldn't believe it! They

told me it would take several weeks to a month to heal. It still is the

nastiest thing I have ever seen and is no where near healed. I'm scared to

death that he will develop another one somewhere. He's off the pain

meds...only takes tylenol periodically for pain. I think he really only

hurts now if we have to move him alot. I spoke to his psychiatrist because

the SIB/aggressive behaviors were increasing (gee, I probably would be

aggressive too! LOL) and we increased his Risperdal. That has helped his

mood. considerably. All in all, I would say that he is progressing well. I

think the worst part is that, as far as was concerned, he went into

the hospital feeling fine, and came out all jacked up! I feel so bad for

him, I just can't stand it. I just hope it makes enough of a difference when

it's healed to make it worth what he's gone through!

Thank you for being concerned.

Terry

[Guest guest]

In a message dated 2/22/01 12:15:06 AM Eastern Standard Time,

burnett@... writes:

<< Hi Terry

Welcome back to the List. I've been thinking a lot about you & .

How did the surgery go & how is doing now? >>

Yes Terry! Did I miss another post? How did surgery go and how is

doing?

Gail

[Guest guest]

Hi Gail,

No...I haven't been posting for the past few weeks. I really felt like I was

in over my head when we first came home and since then I've been busy with

and trying to find ways to deal with issues related to the cast. I

posted an earlier message (a few minutes ago) with regard to 's

surgery so I won't repeat it all...but is ok. Thanks so much for

asking!

Terry

[Guest guest]

In a message dated 2/22/01 1:23:05 AM Eastern Standard Time,

Imaddenmom@... writes:

<< Hi Gail,

No...I haven't been posting for the past few weeks. I really felt like I

was

in over my head when we first came home and since then I've been busy with

and trying to find ways to deal with issues related to the cast. I

posted an earlier message (a few minutes ago) with regard to 's

surgery so I won't repeat it all...but is ok. Thanks so much for

asking!

Terry >>

Didn't get your post yet Terry, but will read it at the site. Thanks for the

reply and hope all is going as well as it can for you.

Gail

[Guest guest]

Oh, poor kid!!! Bed sore after 2 days? I hear they are awful things. How

are you holding up now Terry? Is it as hard as you thought it would be, or

harder? How are 's spirits? Does he understand any of what has

happened to him? He must be so uncomfortable. I know I would have to be in

an induced coma if I were him! Sending my heart and prayers Terry.

(((((hugs)))))

Gail

[Guest guest]

Thanks for understanding Gail. No, I don't think has a clue as to

what's happened to him. He puts his arms up to me, like a baby to be picked

up, as if to say...ok, I'm done...you can take me out of this. God, how I

wish I could! A big part of the problem is that there is really nothing

enjoys doing like coloring, or listening to stories, etc. He will

sort of attend to a video or listen to a musical audio tape but otherwise,

it's like trying to entertain a baby that can't move around. He will play

with beads or other things he can stim with for a while, but that's about

it. We bought a new kind of " busy box " tonight and we are hopeful that maybe

it will catch his interest. Maybe we can use this time to try to work on

fine motor things....This is a hundred times harder than I thought...no, let

me rephrase that....I guess I really didn't think! I heard what the doctor

said about him being in a cast (although going into surgery, we thought it

was for 6 weeks, not 3 months!) and I knew there would be practical problems,

but I didn't realize what it would really be like. I think anybody whose kid

is going to have this surgery needs to (at the least) see a video of the real

thing so they can be better prepared. The doctor told us that 's

other hip isn't normal either and that he thought he could " buy us some time "

by casting the other hip for this time as well. But he said that sooner or

later it will dislocate. Knowing what we know now, the outcome of this

surgery will have to improve his quality of life pretty dramatically for us

to do it again, I'll tell ya! I'm holding up ok I guess. I get to the

point where I just want to cry but I'm afraid if I do I will just lose it

altogether. I have a lot of help here between my husband, son and respite

and that makes a big difference. There are only a couple of hours each day

that there isn't two people here because it takes two to move him. I

appreciate the good thoughts and prayers. We need them!

Terry

[Guest guest]

In a message dated 2/22/01 2:31:52 AM Eastern Standard Time,

Imaddenmom@... writes:

<< There are only a couple of hours each day

that there isn't two people here because it takes two to move him. I

appreciate the good thoughts and prayers. We need them!

Terry >>

Oh wow Terry! (((((hugs))))) Sure wish we all lived in a commune so we

could help each other out. Sounds absolutely horrible. I pray that no one

else on this list ever has to go through that. Guess I shall count my

blessings tonight and when I say my prayers, I will ask for double blessings

for you.

Gail

[Guest guest]

In a message dated 2/22/01 2:31:54 AM Eastern Standard Time,

Imaddenmom@... writes:

> Thanks for understanding Gail. No, I don't think has a clue as to

> what's happened to him. He puts his arms up to me, like a baby to be

picked

>

> up, as if to say...ok, I'm done...you can take me out of this. God, how I

> wish I could! A big part of the problem is that there is really nothing

> enjoys doing like coloring, or listening to stories, etc. He will

> sort of attend to a video or listen to a musical audio tape but otherwise,

> it's like trying to entertain a baby that can't move around. He will play

> with beads or other things he can stim with for a while, but that's about

> it. We bought a new kind of " busy box " tonight and we are hopeful that

> maybe

> it will catch his interest.

That third sentence is where I teared up.

What things can people think of that might help out? Three months is a long

time.

I used to keep dozens of those puzzle blocks to take to appointment waiting

rooms because Jordan could spend an hour with any one of them.

They are see through plastic and have little silver balls inside with

different types of puzzles for each block. There are holes that the balls go

through. You buy them individually but they're all different. There are also

a type that are the same idea but round. I think those batons with the moving

glitter are about $1. Jordan also loved mirror balls and the fisher-price

flashlight that can go 3 different colours. He clocked alot of hospital and

bed time when he was young and I was criticized by many at the time for

letting him 'groove' on these things but the colouful, bright and movable

objects kept him happy. I forget how old is but those of you that

know him maybe can suggest things you think would help make him more content

in his immovable state? Since a stroke I often forget the name of things but

I also bought that unbreakable mirror stuff in a large sheet to put along his

bedside in a height about 2 feet for the whole length. At 18 Jordan is

finally over his mobiles but he stares at his glow-in-the-dark stars all over

his ceiling at night before sleep. If isn't noise-sensitive (Jordan

was opposite) the various noisemakers might keep him occupied (and drive you

nuts, right?) Being able to control his own handheld radio was also a

God-send for my kid when he couldn't move. Another favourite was a crazy

pom-pom like ball made for a keychain....he still likes to feel that!

[Guest guest]

Hi Leah,

yeah, this sucks! likes a FEW videos....Barney and Big Bird only,

and believe me we have them all! LOL No, he can't do computer, game boy or

anything like that....he really doesn't amuse himself except for stimming.

Someone has to be with him all the time to " play " with him (patty cake, etc.)

or he is trying to pull out his g-tube or pull off the urinary collection bag

(ouch!!!) we have on him. He already has a bruise on his cheek from hitting

himself out of boredom/frustration! He was taking .25 three times a day

of Risperdal. Now he is taking .5 in the morning and afternoon and .25 at

night. He also takes 5 mg. of Zyprexa 3 times a day and Tegretol and

Depekene for seizures. If it was me, I would be zonked all day. But he's up

around 6:30 or 7:00 wide-eyed and happy. By about 8:30 he's dozing on and

off and by 9:30 he's back! He is usually pretty happy until around 3:00 or

so and then he starts getting tired of the whole situation again. By about

4:30 he's really a stinker, trying to pull out the g-tube every chance he

gets and pinching/scratching anybody who tries to interact with him. We're

trying to figure out ways to keep him from getting to the g-tube.....like

pinning the blanket around him, etc. so that we don't have to restrain him.

We have to be pretty creative around here! LOL Yeah, the teacher and the

aides have been here several times but 's IEP pretty much centered

around toilet training and SI issues so it's really hard for them to find

something to do with him right now. We are working on the SI stuff as much

as we can but we are limited because of his cast and position. We have the

hosptial bed set up in the living room which is the most used room in the

house. That's a good thing as far as he is with everybody but a bad thing as

far as him getting any rest/quiet time during the day. We can't put him in

his bed because it is a waterbed and we can't move the hospital bed from room

to room. I try to have him spend a fair amount of time in the wheelchair

during the day and we can move that around some...my husband is going to work

on making ramps this weekend so when the weather is nice we can take him

outside. Of course, we haven't had this much rain/snow all year! LOL We're

learning. By the time he gets out of the cast, I figure we'll have it all

down! Maybe I'll write a book! LOL

Terry

[Guest guest]

Thanks for the suggestions, Dodi! We do have the glitter baton and the glow

in the dark stars in his room! (Unfortunately, he can't see them right now

because his hospital bed is set up in the living room.....) but I have pinned

up stuff on the wall next to him. My son brought over a lava lamp for him to

watch and we bought a Fisher Price aquarium (straps on the side of the bed

and has fish that move in pseudo-water and water sounds) that is a hit! He's

kind of burnt out on the computer musical toys but my husband found a busy

box that no matter what they touch it tells a short story or nursery rhyme

(12 months up). It has some lights on it that flash as well. I'm going to

see how he feels about that today. We have the FP flashlight too! It's a

winner! There is another flashlight that I think we got at Toys R Us and is

an alligator. When he holds it by the tail, its mouth opens up and the light

comes on! He really likes that one. He just stares at the light! LOL

Whatever, right?! LOL We have a rainstick and various other stuff like

that. He hates shapesorters (the schools have been pushing them for years).

I have a whole box of packing peanuts, but I'm not sure how to facilitate him

playing with them because of his position. He can't really sit up and he

can't play on his side....hmmmm. is 14, how old is Jordan? It

sounds as though they like a lot of the same things? has an

" earthsounds " bear that is sound/movement sensitive and makes nature noises

(crickets, water noises, etc)

Thanks for the help. If you think of anything else, please let me know!

Terry

[Guest guest]

,

That's a thought...most of my 18 yr. old's friends are 18+ and they do help.

I don't know any jr. high kids but I know that a couple of high school kids

work in his classroom. I wonder if I could get one of them

occasionally....hmmmmm. Thanks for the idea!

Terry

[Guest guest]

In a message dated 2/22/01 10:00:59 AM Eastern Standard Time,

Evesmother@... writes:

<< That third sentence is where I teared up.

What things can people think of that might help out? Three months is a long

time. >>

I can think of tons of things, but if is anything like Seth, there is

nothing that he would be interested in other than a video and his shoe. LOL

It would be a totally one on one thing with Seth just to play with a fisher

price phone or a busy box. Things I would use to keep Seth occupied while I

was busy would be like; mylar balloons with really long strings that he could

shake *upside down*, a *real* phone, cello paper to crunch and shake, a small

clear plastic bottle filled with water and beads to shake, put jello or

pudding on his hands and let him work at or eat it off. Those are things I

think Seth would keep busy with for a short time! LOL

Gail

[Guest guest]

Yep Gail...I know you can relate! LOL I have bag of Easter basket grass

that I have been saving for an emergency.....if I could figure out how to

keep it out of his cast, I would give it to him! Can't do the jello

thing...he doesn't eat anything by mouth....Can do the crunchy paper! LOL

One of his aides gave him a bouquet of curly ribbons for his B-day. She

really knows him! LOL I was just thinking that, as frustrated as I get with

the " system " sometimes, our school staff here is really pretty nice. They

made a video of 's class going through a typical day and gave it to

. He paid attention to it....I think he was probably trying to figure

out why the heck they were in his tv! LOL But he was interested! They also

put a book together with each kid's picture and the teacher and each aide and

gave it to so he could see pictures of his classmates. (He is in a

self-contained class) At least they try. Where we lived before, they

wouldn't have done anything like that.

Terry

[Guest guest]

terry,

poor matthew and poor you@!!!!!! geez this list is sure seeing its mess of

sickness and sadness lately, gail,donna, laura,terry, me???? all with sick

kids..... i sure hope we have a wave of happiness soon that spreads toall of

us...lmao terry how much risperadol does matthew take???? how on earth does

he amuse himself all day???? ashton wo uld be glued to the tube, heck he

can't even do compute3r canhe????what about doodler or game boy??? is the

school giving him homebound services???? tcleah

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

In a message dated 2/22/01 10:55:06 AM Eastern Standard Time,

Imaddenmom@... writes:

> hmmmm. is 14, how old is Jordan? It

> sounds as though they like a lot of the same things? has an

> " earthsounds " bear that is sound/movement sensitive and makes nature

noises

> (crickets, water noises, etc)

> Thanks for the help. If you think of anything else, please let me know!

> Terry

Jordan's 18 now and we don't have to use the things I suggested anymore

(but that doesn't mean he'll get rid of them! LOL) During long waiting-room

waits now, if he's bored, he can sit the time out feeling my fingernails!

The other day some mothers were talking about their kids making trains with

their videos (was it this board? I forget!) but now when Jordan isn't with

his computer or the TV/VCR or the music cassettes...sometimes all

going at once top volume...and him typing away making lists....he will be

lining up cars in straight lines till they cover his entire floor. Doesn't

play with them..just makes lines. Course then there's nowhere to walk but ...

Alternately, he lines up over a hundred coloured pencils. So I'm wondering if

that's what they meant with the video trains...just lining up the videos?

Of course I've never had a diagnosis....but times are changing and there are

people here now who are more open to the idea that a kid with Downs

might have something else going on. Dodi

[Guest guest]

In a message dated 2/22/01 1:37:52 AM Eastern Standard Time,

Imaddenmom@... writes:

<< I just hope it makes enough of a difference when

it's healed to make it worth what he's gone through!

Thank you for being concerned. >>

Gosh, me too Terry!!! So sorry you and are having to go through

this. {{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}

Donna

[Guest guest]

Dodi

LOL! I was just asking my 18 yr. old if he remembered when used to

play with Sara's (my daughter) and my fingernails? When I was working, I had

acrylic nails. used to love to rub his fingers over them over and

over. He did the same thing with Sara. When I was no longer working, I got

rid of the nails. I think he was really disappointed! LOL I wonder if

will ever get to the point where he would play on a computer or with

cars, etc.? He will pick up a car now but just to spin the wheels. We've

tried touch screens, keyboards, and wands on the computer...no interest.

Maybe someday.....

Terry

[Guest guest]

Terry,

How about seeing if there are any " kids " (Like older Jr High to High

school age) who may want to volunteer occasionally to entertain ?

S

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[Guest guest]

will pray for a speedy recovery, shawna.

Re: How's ?

> Hi ,

> Congratulations on working it out so could go on the Retreat!

What

> a wonderful opportunity for her! She's lucky to have you for an advocate!

> You'd be surprised how many parents want something for their kids but

aren't

> willing to be a part of finding a solution to the barriers.

> 's surgery went well, but was so much more involved than we

expected.

> He was there 10 long hours and the doctor had to do more than he

anticipated.

> will be in the spica cast for a total of three months, assuming

that

> everything heals well. (The cast comes up above his waist front and back

and

> down to his ankle on the right leg; down to the knee on the left. He is

bent

> at about a 30 degree angle so he can't sit up and he can't lie down

flat. )

> After the cast comes off, he will be in a brace " for some time " according

to

> the doctor. He was in the hospital for 5 days. The first day we were

home,

> I felt completely overwhelmed and wasn't sure I could do this. A friend

of

> mine is a pediatric nurse and she came over and helped me to get it

together.

> Over the last few weeks we have developed a routine that seems to be

> working with respect to incontinence issues and moving him from the bed to

> the wheelchair and back. He has to be re-positioned every 2 hours. The

> second day following surgery before he even left the hospital, he

developed a

> pressure ulcer (bed sore) on his right heel. I couldn't believe it! They

> told me it would take several weeks to a month to heal. It still is the

> nastiest thing I have ever seen and is no where near healed. I'm scared

to

> death that he will develop another one somewhere. He's off the pain

> meds...only takes tylenol periodically for pain. I think he really only

> hurts now if we have to move him alot. I spoke to his psychiatrist

because

> the SIB/aggressive behaviors were increasing (gee, I probably would be

> aggressive too! LOL) and we increased his Risperdal. That has helped

his

> mood. considerably. All in all, I would say that he is progressing well.

I

> think the worst part is that, as far as was concerned, he went

into

> the hospital feeling fine, and came out all jacked up! I feel so bad for

> him, I just can't stand it. I just hope it makes enough of a difference

when

> it's healed to make it worth what he's gone through!

> Thank you for being concerned.

> Terry

>

>

>

[Guest guest]

Y'all pray for my grandma.

--- Geoff and Green <gsgreen@...> wrote:

> will pray for a speedy recovery, shawna.

> Re: How's ?

>

>

> > Hi ,

> > Congratulations on working it out so

> could go on the Retreat!

> What

> > a wonderful opportunity for her! She's lucky to

> have you for an advocate!

> > You'd be surprised how many parents want something

> for their kids but

> aren't

> > willing to be a part of finding a solution to the

> barriers.

> > 's surgery went well, but was so much more

> involved than we

> expected.

> > He was there 10 long hours and the doctor had to

> do more than he

> anticipated.

> > will be in the spica cast for a total of

> three months, assuming

> that

> > everything heals well. (The cast comes up above

> his waist front and back

> and

> > down to his ankle on the right leg; down to the

> knee on the left. He is

> bent

> > at about a 30 degree angle so he can't sit up and

> he can't lie down

> flat. )

> > After the cast comes off, he will be in a brace

> " for some time " according

> to

> > the doctor. He was in the hospital for 5 days.

> The first day we were

> home,

> > I felt completely overwhelmed and wasn't sure I

> could do this. A friend

> of

> > mine is a pediatric nurse and she came over and

> helped me to get it

> together.

> > Over the last few weeks we have developed a

> routine that seems to be

> > working with respect to incontinence issues and

> moving him from the bed to

> > the wheelchair and back. He has to be

> re-positioned every 2 hours. The

> > second day following surgery before he even left

> the hospital, he

> developed a

> > pressure ulcer (bed sore) on his right heel. I

> couldn't believe it! They

> > told me it would take several weeks to a month to

> heal. It still is the

> > nastiest thing I have ever seen and is no where

> near healed. I'm scared

> to

> > death that he will develop another one somewhere.

> He's off the pain

> > meds...only takes tylenol periodically for pain.

> I think he really only

> > hurts now if we have to move him alot. I spoke to

> his psychiatrist

> because

> > the SIB/aggressive behaviors were increasing (gee,

> I probably would be

> > aggressive too! LOL) and we increased his

> Risperdal. That has helped

> his

> > mood. considerably. All in all, I would say that

> he is progressing well.

> I

> > think the worst part is that, as far as

> was concerned, he went

> into

> > the hospital feeling fine, and came out all jacked

> up! I feel so bad for

> > him, I just can't stand it. I just hope it makes

> enough of a difference

> when

> > it's healed to make it worth what he's gone

> through!

> > Thank you for being concerned.

> > Terry

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

> >

> >

> >

> >

[Guest guest]

My doctor here is the best - he has written two textbooks on liver disease

and published over 75papers. I am in such good hands and trust him. Not

something I had back home.

[Guest guest]

,

Yes, the northern part of Wyoming is more picturesque

than the southern part, especially the southwestern

part. I admire those who live in that section. It must

be very depressing. I need my mountains and some

variety to the landscape and some vegetation.

We haven't heard from you much lately. Did you go back

to Montana or are you still at your aunt's house in

Atlanta?

How are you feeling?

__________________________________________________

[Guest guest]

, Are you seeing a physician in Atlanta? I have not received some posts,

so did not realize you were in the Atlanta area currently. It is so difficult

to

be ill and be away from home and one's personal physicians. Been there. No

fun. Hope you are well enough to return home soon. Take care. Carol

mtmuscldog@... wrote:

> I am still in Atlanta - have been on two weeks of 40mg prednisone - down to

> 30 now - go back to doctor in two weeks to see if I he will let me go back

> home. Ironically I have been judging at speech meets for the last three

> weekends - very uncanny how that fell from the sky. My school has been great

> about keeping my job for me - they want me to come back. If my meds are not

> working I will have to let the job go for the rest of the year - I have held

> themup too much.

>

>

>

>

>