UPDATE

[Guest guest]

He is going to look around and see how much damage there is and also clean

up the cartilage. I was surprised that he had openings so soon myself I

could have had it done today. I figured I would give my husband a days

notice to get off some time off work.

Thanks for the idea of ice bag I made a few up this morning my ice pack

broke the other day so I needed a new one anyway and this is cheaper than

buying one.

I do have a couple of question I know how long I am on crutches depends on

what he does in there what is the avg time that you was on crutches?

What is the pain afterwards like?

.. I am not sure what pain medication they are prescribing me(didn’t think to

ask when I was at the office ) but they are calling it in today so I have

it after the surgery.

_____

From: chondromalacia treatment

[mailto:chondromalacia treatment ] On Behalf Of MJD

Sent: Monday, July 10, 2006 7:58 PM

chondromalacia treatment

Subject: RE: update

Hello

Wow, two days from now! Sure hope it will give you

some much needed relief. What is your OS going to do

arthroscopically?

Sure hope it's something very " fixable " and that

you'll be running around without those crutches

soon(est)!

Let us know how it went as soon as you get a chance,

ok?? Til then, stay off your knee so you won't have

any extra inflammation to contend with! Hey, you might

want to make yourself some icebags so you can ice your

knee alot when you come home. I put about 60 percent

water and 40 percent rubbing alcohol in a gallon

freezer bag (I double bag it). This makes an ice pack

that conforms nicely around your knee.

All the best,

nne

update

WEll I finally broke down and went to the OS he is

going to do

arthroscopy on Wed this week. He also said i should go

on crutches

since the knee is hurting when I put weight on it .

So hopefully Wed

after noon i will know about how bad the damage is to

my knee.

--

[Guest guest]

Hello

Be sure to pick up your pain meds before surgery, or

have someone pick them up, so you don't have to stop

for them afterwards.

Crutches? That all depends on your own comfort level,

and what the doc wants you to do.

Pain? Initially there will be some discomfort, but

the pain meds will help with that. Don't skimp on the

pain meds, it's important for healing that your nerves

aren't screaming in pain, so to speak. The first few

days it seems pretty important to follow the

prescribed pain med routine. After that, it becomes a

matter of comfort level on your part. The key is to

never let the pain get out of control... no doubt at

the hospital they will talk to you about pain levels

(1-10) and such. Your knee might feel a bit swollen

and tight. The bandage will help control the

swelling, but there will still be some reaction from

your body to the invasion of the scope. NO big deal

though....it feels a bit tight. It's really important

to raise your leg as high as you can....preferably

above your heart level, when you are sitting on the

sofa, etc for the first few days. Don't DO ANYTHING

for a few days....just sit, ice and snooze.....the

best way to get your knee back to normal. Let others

wait on you!!! )))))

Hope your doc will prescribe some PT for you after

surgery. The idea of " exercising " will seem awkward

at first, but it's important for all the muscles

involved that they don't sit around for more than a

few days....

Best of luck tomorrow.....you'll be fine!!

marianne

update

WEll I finally broke down and went to the OS he is

going to do

arthroscopy on Wed this week. He also said i should go

on crutches

since the knee is hurting when I put weight on it .

So hopefully Wed

after noon i will know about how bad the damage is to

my knee.

--

[Guest guest]

I'm all for doing something together.

Eleanor

_____

From: [mailto: ] On Behalf

Of kindafunny@...

Sent: Tuesday, August 01, 2006 12:18 AM

Subject: Update

This is the update from 's care page today. , do we do anything

as a group in a situation like this?

13 July 31, 2006 at 11:58 PM EDT

tonights update comes with a very heavy, hurting heart. benjamins very long

journey will soon be over as it appears its God's will that he will soon be

w

ith Him in heaven. we've done all we can, getting him any and all medical

treatments to make him better but the time has come when it isnt possible

anymore. we will do, as we've always tried to do, what is best for our son.

we will

not continue to put him through any more treatments, tests or torture to

find answers and cures. benjamin deserves to be free of pain and suffering

and

as his parents who love him so very deeply it will be our final gift to him.

even tho it kills us to let him go and we would die ourselves to keep him

with

us longer, we will release our grasp on him knowing he will be entering thru

the gates of heaven into eternal life. please continue to pray for benajmin

as he completes his final journey.

benjamin.....mom and dad love you so very much, so very deeply and we thank

God you were a part of our lives even if it was only for a short time. we

couldnt be more proud of the little man that you are. you have taught so

many

people so many things, us included. not a second will go by that you will

not

be in our hearts, thoughts and prayers. im sure it will be unbearable

without

you and we will miss your sweet little smile, your thumbs up, " your

benjaminisms " terribly but knowing you are in a better place will help

lighten the

pain of having you gone. if love alone could of made you better then you

never

would of gotten sick. you have the love, admiration and respect of everyone

that knows you. Goodbye my sweet little benjamin. mom and dad will be with

you

once again when God calls us to him.

[Guest guest]

My 8 year old nonDS would like to make a card for the

family. Did he have any other sibs? Where would he

send it too.

--- Eleanor Green <eig@...> wrote:

> I'm all for doing something together.

>

> Eleanor

>

> _____

>

> From:

> [mailto: ] On Behalf

> Of kindafunny@...

> Sent: Tuesday, August 01, 2006 12:18 AM

>

> Subject: Update

>

>

>

>

> This is the update from 's care page today.

> , do we do anything

>

> as a group in a situation like this?

>

> 13 July 31, 2006 at 11:58 PM EDT

> tonights update comes with a very heavy, hurting

> heart. benjamins very long

> journey will soon be over as it appears its God's

> will that he will soon be

> w

> ith Him in heaven. we've done all we can, getting

> him any and all medical

> treatments to make him better but the time has come

> when it isnt possible

> anymore. we will do, as we've always tried to do,

> what is best for our son.

> we will

> not continue to put him through any more treatments,

> tests or torture to

> find answers and cures. benjamin deserves to be free

> of pain and suffering

> and

> as his parents who love him so very deeply it will

> be our final gift to him.

>

> even tho it kills us to let him go and we would die

> ourselves to keep him

> with

> us longer, we will release our grasp on him knowing

> he will be entering thru

>

> the gates of heaven into eternal life. please

> continue to pray for benajmin

> as he completes his final journey.

>

> benjamin.....mom and dad love you so very much, so

> very deeply and we thank

> God you were a part of our lives even if it was only

> for a short time. we

> couldnt be more proud of the little man that you

> are. you have taught so

> many

> people so many things, us included. not a second

> will go by that you will

> not

> be in our hearts, thoughts and prayers. im sure it

> will be unbearable

> without

> you and we will miss your sweet little smile, your

> thumbs up, " your

> benjaminisms " terribly but knowing you are in a

> better place will help

> lighten the

> pain of having you gone. if love alone could of made

> you better then you

> never

> would of gotten sick. you have the love, admiration

> and respect of everyone

> that knows you. Goodbye my sweet little benjamin.

> mom and dad will be with

> you

> once again when God calls us to him.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> Click reply to all for messages to go to the list.

> Just hit reply for messages to go to the sender of

> the message.

>

[Guest guest]

Me too.

Sharon H.

Mom to , (14, DS) and , (11)

South Carolina

" Be kinder than necessary, for everyone you meet is fighting some kind of

battle. "

Update

This is the update from 's care page today. , do we do anything

as a group in a situation like this?

13 July 31, 2006 at 11:58 PM EDT

tonights update comes with a very heavy, hurting heart. benjamins very long

journey will soon be over as it appears its God's will that he will soon be

w

ith Him in heaven. we've done all we can, getting him any and all medical

treatments to make him better but the time has come when it isnt possible

anymore. we will do, as we've always tried to do, what is best for our son.

we will

not continue to put him through any more treatments, tests or torture to

find answers and cures. benjamin deserves to be free of pain and suffering

and

as his parents who love him so very deeply it will be our final gift to him.

even tho it kills us to let him go and we would die ourselves to keep him

with

us longer, we will release our grasp on him knowing he will be entering thru

the gates of heaven into eternal life. please continue to pray for benajmin

as he completes his final journey.

benjamin.....mom and dad love you so very much, so very deeply and we thank

God you were a part of our lives even if it was only for a short time. we

couldnt be more proud of the little man that you are. you have taught so

many

people so many things, us included. not a second will go by that you will

not

be in our hearts, thoughts and prayers. im sure it will be unbearable

without

you and we will miss your sweet little smile, your thumbs up, " your

benjaminisms " terribly but knowing you are in a better place will help

lighten the

pain of having you gone. if love alone could of made you better then you

never

would of gotten sick. you have the love, admiration and respect of everyone

that knows you. Goodbye my sweet little benjamin. mom and dad will be with

you

once again when God calls us to him.

[Guest guest]

For those who want to do something as a group, should the time come (still

hopeful Ben will pull through this!), please email me privately.

Update

>

> This is the update from 's care page today. , do we do

> anything

> as a group in a situation like this?

[Guest guest]

Wooohooo Jana congrats!!

[Guest guest]

Congratulations! Have you been out of work or are you changing jobs? I went back after being a stay at home mom for 9 years. Talk about a tough transistion! Two months later and we're still not used to it. At least we'll be in a routine with school starting. School starts next Wed. so summer is rapidly coming to a close.

Ann

[Guest guest]

I have been out of work for 5 years.My husband makes enough that I can stay at home but I feel useless and wanted to get a job. My baby went to Kindergarten last year and I was so bored at home that I knew I had to get out. I will be working at the school my kids go to so it will be great I can see them all day lol. I go on Monday to take a tb test I have never had one of those before. My kids start on the 16th so I am counting the days down because it is so hot they cant play outside for more than 15 minutes at a time, so all they do is fight. Jana

Re: update

Congratulations! Have you been out of work or are you changing jobs? I went back after being a stay at home mom for 9 years. Talk about a tough transistion! Two months later and we're still not used to it. At least we'll be in a routine with school starting. School starts next Wed. so summer is rapidly coming to a close.

Ann

[Guest guest]

My baby starts 1st grade on the 16th too. My older daughter is going into 4th. I was all set to pursue a teaching career to be on the kids' schedule but I ended up getting an engineering job since the economy in Houston is booming right now. We've been going deeper and deeper into debt since I started working so it's nice to have a salary.

Ann

[Guest guest]

My oldest will start college on Aug 25. My youngest will be a junior in high school. Both are growing up way to fast! Ann and <maryannanderic@...> wrote: My baby starts 1st grade on the 16th too. My older daughter is going into 4th. I was all set to pursue a teaching career to be on the kids' schedule but I ended up getting an engineering job since the economy in Houston is booming right now. We've been going deeper and deeper into debt since

I started working so it's nice to have a salary. Ann Dacia <><www.DeafJesus.org He lives, all glory to his name! He lives, my savior, still the same;What joy this blest assurance gives: I know that my Redeemer lives!

[Guest guest]

Great!!!! There's nothing worse then sitting around waiting for a phone call to find out if you are hired or not. I'm glad you got the job.

update

Well I am happy to report that they called and offered me the job I passed with flying colors they said. Thanks to everyone who wished me luck. Jana

[Guest guest]

In a message dated 8/20/2006 2:20:23 PM Pacific Standard Time, tazmancd@... writes:

I weighed today and I am down 4lbs to 236....I start my job tomorrow at the school.

WOOHOO Jana on both counts!! Fantastic about the pounds lost and good luck/have fun at the new job!!

[Guest guest]

I must have missed your post when you got ythe job at the school. Congrats! It will be tiring I'm sure but it sounds like you might enjoy it:) Good going on the weight loss too:)

I weighed today and I am down 4lbs to 236, I was shocked because I started TOM yesterday. I have been busy running around all week, I start my job tomorrow at the school. I am excited since I know everyone there, and also cause I have not had a job in 5 years or so. I hope everyones weekend is going great. Jana

[Guest guest]

Fantastic, Jana! :-) 4 pounds is great!

So how was your first day at work? Hope it went well!

-Bonnie

> I weighed today and I am down 4lbs to 236, I was shocked because I

started TOM yesterday. I have been busy running around all week, I

start my job tomorrow at the school. I am excited since I know

everyone there, and also cause I have not had a job in 5 years or so.

I hope everyones weekend is going great. Jana

>

[Guest guest]

My first day was great. It is the easist job I have ever had. I told my husband

I cant believe they are paying me do to that LOL. I pretty much just stand/sit

there and watch the kids. Jana

---- brgk44 <brgk44@...> wrote:

> Fantastic, Jana! :-) 4 pounds is great!

> So how was your first day at work? Hope it went well!

>

> -Bonnie

>

> > I weighed today and I am down 4lbs to 236, I was shocked because I

> started TOM yesterday. I have been busy running around all week, I

> start my job tomorrow at the school. I am excited since I know

> everyone there, and also cause I have not had a job in 5 years or so.

> I hope everyones weekend is going great. Jana

> >

>

>

>

>

[Guest guest]

Hi ,

Belated Happy Birthday to , and thanks so very much for sharing

your news about yourself and your family with us!!! We always love to

hear from you and to know that you are all happy and doing well. We

even like to know when you are NOT doing well so that we can step up our

prayers for you!!! I am sure that I speak for all of us, and not just

for myself when I say that!!

Love always,

Pat

Rettig wrote:

> Hi All

> turned 17 yesterday . Jake is doing good should be starting flight

school OCT 16th.

> He will be home at Christmas. That will be nice that we will be together.

>

> and and a few good fiends are taking a road trip over

thanksgiving.

>

> Joe my third adopted son graduates from army boot camp Oct 19 . Keep him in

your prayers also

> He had a harder time then Jake did. IT has been a littlie rough for him

>

> thanks everyone

>

> Blessings

> R

>

>

[Guest guest]

Thank you sweet PAT!!

Blessings

Re: Update

Hi ,

Belated Happy Birthday to , and thanks so very much for sharing

your news about yourself and your family with us!!! We always love to

hear from you and to know that you are all happy and doing well. We

even like to know when you are NOT doing well so that we can step up our

prayers for you!!! I am sure that I speak for all of us, and not just

for myself when I say that!!

Love always,

Pat

Rettig wrote:

> Hi All

> turned 17 yesterday . Jake is doing good should be starting flight

school OCT 16th.

> He will be home at Christmas. That will be nice that we will be together.

>

> and and a few good fiends are taking a road trip over

thanksgiving.

>

> Joe my third adopted son graduates from army boot camp Oct 19 . Keep him in

your prayers also

> He had a harder time then Jake did. IT has been a littlie rough for him

>

> thanks everyone

>

> Blessings

> R

>

>

[Guest guest]

You're very welcome, sweet DIANA!! Thank you so much for just being YOU!!

Love always,

Pat

Rettig wrote:

> Thank you sweet PAT!!

>

> Blessings

>

> Re: Update

>

>

> Hi ,

>

> Belated Happy Birthday to , and thanks so very much for sharing

> your news about yourself and your family with us!!! We always love to

> hear from you and to know that you are all happy and doing well. We

> even like to know when you are NOT doing well so that we can step up our

> prayers for you!!! I am sure that I speak for all of us, and not just

> for myself when I say that!!

>

> Love always,

> Pat

>

> Rettig wrote:

> > Hi All

> > turned 17 yesterday . Jake is doing good should be starting flight

school OCT 16th.

> > He will be home at Christmas. That will be nice that we will be together.

> >

> > and and a few good fiends are taking a road trip over

thanksgiving.

> >

> > Joe my third adopted son graduates from army boot camp Oct 19 . Keep him

in your prayers also

> > He had a harder time then Jake did. IT has been a littlie rough for him

> >

> > thanks everyone

> >

> > Blessings

> > R

> >

> >

[Guest guest]

MIke,

Good news about the Auto immune system. As you have found, everything is a

ripple affect. I have put on one of my cmpressions socks after reading your

note. I have a lot of swelling in mu foot and your noate made me think the

sock will help. I would think the percentage of us needing TKRs vs others

is quite high. I hope to put it off until I am at least 65. We will see.

Thanks for an informative post

Don

On 10/21/06, Mike Bernhardt <mlbernhardt@...> wrote:

>

> After reading Don's posts, my update seems rather trivial, but here

> goes. My Rheumatologist says I probably don't have an auto-immune disease,

> and after a few weeks of PT, I am inclined to agree with her. My shoulder,

> hip, and ankle pain are probably directly connected to my CP. The hip pain

> has been dramatically helped by PT, the shoulder pain has in turn somewhat

> subsided on it's own. My hips and shoulders have taking much more abuse

> trying to take pressure off my knees, especially doing things like getting

> out of a chair. My ankle pain and swelling seems now to have been caused by

> the Tubigrips I was using to be acting somewhat like a tourniquet and

> cutting off my lymphatic system and causing toxic fluids to build up in my

> ankles. I have switched to using full length Jobst compression socks to take

> the swelling and inflammation and pain out of my ankles and knees. That is a

> fairly expensive option at $47/pair at our local medical supply house, but I

> have found some for $33/pair on the internet, and I am seeing if my health

> insurance will help cover the cost. My GP told me the other day I will

> probably need TKRs some day, but I am trying to put off the inevitable for

> as long as possible. With compression, my knee pain is relatively tolerable.

>

> Mike

> MT

>

>

[Guest guest]

Anyone here considering a TKR should join 's Joint Replacement group.

I was going to get a TKR but after reading their posts (and after finding out

that if I worked up to exercise slowly, I could do more than I thought I could

do) I decided to wait.

Ann

o Re: update

MIke,

Good news about the Auto immune system. As you have found, everything is a

ripple affect. I have put on one of my cmpressions socks after reading your

note. I have a lot of swelling in mu foot and your noate made me think the

sock will help. I would think the percentage of us needing TKRs vs others

is quite high. I hope to put it off until I am at least 65. We will see.

Thanks for an informative post

Don

On 10/21/06, Mike Bernhardt <mlbernhardt@...> wrote:

>

> After reading Don's posts, my update seems rather trivial, but here

> goes. My Rheumatologist says I probably don't have an auto-immune disease,

> and after a few weeks of PT, I am inclined to agree with her. My shoulder,

> hip, and ankle pain are probably directly connected to my CP. The hip pain

> has been dramatically helped by PT, the shoulder pain has in turn somewhat

> subsided on it's own. My hips and shoulders have taking much more abuse

> trying to take pressure off my knees, especially doing things like getting

> out of a chair. My ankle pain and swelling seems now to have been caused by

> the Tubigrips I was using to be acting somewhat like a tourniquet and

> cutting off my lymphatic system and causing toxic fluids to build up in my

> ankles. I have switched to using full length Jobst compression socks to take

> the swelling and inflammation and pain out of my ankles and knees. That is a

> fairly expensive option at $47/pair at our local medical supply house, but I

> have found some for $33/pair on the internet, and I am seeing if my health

> insurance will help cover the cost. My GP told me the other day I will

> probably need TKRs some day, but I am trying to put off the inevitable for

> as long as possible. With compression, my knee pain is relatively tolerable.

>

> Mike

> MT

>

>

[Guest guest]

> I got the call about the cyst. She felt it should come out.

So when will this be done, when the kids are home for Easter break, summer,

or ??

Tues I started

> my period finally. MAN OH MAN. Tues night I was in such pain. Never

had

> that before.

Yeah, that progesterone helps you get a good cleaning out. Too bad it

happened the day before Valentine's Day. Hopefully it won't interfere with

having the kids home this coming week.

> Now that I have flo I cant wait for it to stop. LOL I am also

struggling

> with a cold. YUGH.

Yugh is right! Hopefully it's a plain old cold and not the Martian death Flu

that we have in this household! 5 weeks for Ed, 4 for Henry, and their

coughs are finally starting to ease off. I still have the sinus stuff, but

thankfully my steroids are keeping the crud out of my lungs for a change.

Sue in NJ

[Guest guest]

I would take her to a GI doctor. It could also be a motility issue. This

sounds similar to when cf kids get GI problems and malabsorption.

Dinkins-Borkowski; Nolan(4) nocf, Phoebe(2) Ds & Cf

Phoebe's Video: http://www.active.com/donate/buddywalk2006/phight4phoebe

Get Phoebe-Chic: http://www.cafepress.com/phoebesphight

update

I can;t remember where I was in this whole mess with my daughters health when I

last emailed the group. I took her into her endocrinologist and they found that

she does infact now have an underactive thyroid so she is now on a full dose of

the meds( starts with L) and they had tested her in June for celiac and it was

negative. Then I took her in twice to the pediatrician since then. Her ped and

the endo doctor think that the gagging is related to the constipation which has

been better since being on miralax. She is still complaining of lower belly pain

and when her doc felt around she seemed consistent in saying that it is lower

belly which she thinks is a gynocological issue. She says that she is too young

for cysts there. She wants to keep her on the miralax every other day to keep

her going and she is going in for a ultrasound on Monday. Also at oneof the

other visits her actual ped( who is on vaca this week) said that he thought that

it may be the pharyngeal flap

surgery causing swallowing problems and that maybe she should have a barium

swallow test. Then all this week she did not gag and was pooping so we thought

that was under control and today she gagged again. It seems to be mostly

phlegm/mucus that comes up. She is still losing weight too. I know that I used

to have reflux and eating chinese food effected me that way. It felt like my

thorat was closing up and then I'd hack up a ton pf phlegm( sorry for the

grossness)> I am at my wits end and feel like I am heading toward a breakdown

here. Any thoughts ideas. Are Dr. Leshin or Leichtman on here still> What do

they think?

Kathy sen

[Guest guest]

" She is still losing weight too "

I don't recall how old is, but it is not normal or ok for a child to be

steadily losing weight....unless she was overweight and placed on a nutritional

plan by a dr and dietician. Have they done any blood work? Have they done a

scope on her? You said she was negative for celiac, does that mean the biopsy

was normal, or did she just have the IgG and TTG blood tests? Hannahs blood

work was only mildly elevated but her biopsy and scope showed severe esophageal

erosion and positive for celiac. Were I you I would become very assertive with

these doctors to find what is wrong. keep in mind that in pediatrics weight

loss can be a significant symptom and should not be overlooked by the MD. I

know how you feel, we spent over a year trying to find out what was wrong...but

she wasn't losing wt, just not gaining. They spent the first few mos trying all

different kinds of laxatives and enemas and she got to where she would just

scream and cry in pain (and she just doesn't cry and has always had a very high

pain tolerence). I was about ready to pop! I read online in one of these

groups of a kid with ds that had similar symptoms and insisted she be tested for

celiac...That is how we found out. I even contacted a GI specialist out of

state who was willing to give our ped a phone consult and he helped us a great

deal as well. Sometimes they force you to take the bull by the horns so to

speak. I have learned that if I instinctively feel something is wrong it

usually is and since Hannah cannot tell me I just have to hunt and push until I

get results for her. Don't give up...keep at it...I know how frustrating it is

but eventually you will find the answer for her. Try getting a referral to a GI

doc as this seems to be the biggest area of problem for her at the moment. Good

luck..will keep her in my prayers.

Tammy

Mom to Hannah 6 ds, Trystan 4

[Guest guest]

Prayers for you all, I know how stressful surgery is. Ruthie had her heart

defect corrected at 4 1/2 months old and it was probably the most stressed

out I'd ever been in my entire life. Keep us updated, I hope it all goes

perfectly tomorrow!

Sue

> Hi everyone. Well here goes. The gallbladder removal went very well. When

> the surgeon tried to work on the imperforate hymen she encountered a

> problem. The reason that she was not releasing blood was that her vagina

> never really formed. All she has is muscle. So basically they have to

> create a vagina for her. They are going to use a piece of her colon to do

> that. They have to get her colon cleaned out of stool for infection

> reasons and then do the surgery. The doc doing it is the best of the best

> around here and he will be assisted by yhe doc that did todays surgery.

> Poor thing probably will be pooping all night although she should not have

> much there. One good thing they are giving her miralax in drink so she

> finally can drink. She was awake and joking with me after the surhgery so

> she is ok. She was completely stable during the procedure. I am just

> worried that something will go wrong with this. My daughter who is one

> year younger than her is just beside herself with worry. PLEASE pray for

> favor, to guide the surgeons hands, to keep any bacteria and infection

> away and that this will be a success, that she will not lose any more

> weight and will get her appetite back( she will not be able to have any

> solids for days after so she does not have any stool enter the area). Also

> pray for my other daughters and my family that we can get through this. I

> am trying so hard to be strong for the other kids but it is so hard. She

> will be back in the OR I think 9 am tomorrow. Thank you everyone.

>

> Kathy

>

>