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That is quite a story, Tess. I'm not sure where to start.

If you don't mind saying, what is your current list of meds?

Do you still have swollen lymph nodes?

When you say that you doubt that drug-associated lupus is the problem,

what DO you believe is the problem? I think often patients have good gut

feelings.

The bank incident sounds ugly. I am very sorry that it happened. I can

understand how it was upsetting in so many different ways.

Maybe Em's friend is sad about leaving, and she's preoccupied with her

other problems. Perhaps this is just the way she is choosing to deal

with it all. She may not even realize the effect on Em. Perhaps she is

shutting everyone out. In any case, it can't be easy for Em and you. I'm

sorry.

And please give Em a special thanks for sending the post she did.

[ ] update

> Dearest Family...thank you all for your love & prayers. You are all

> precious to me.

>

> I saw my pcp yesterday...everything is pretty much the same. I am

> getting just " adequate " oxygen with the 3 inhalers, but not enough to

go

> off any yet. She believes it will probably still be awhile before the

> asthma hopeully goes back into hiding! Still monitoring the

> chills-dizzy-fatigue-fever-dry cough, etc. She is encouraging me to

> sleep as much as I can. She thinks the awful thing I coughed up last

> week was a mucus plug from the asthma. My chest aches. It hasn't

been

> this bad for so many years.

>

> A nice thing...doing all these upper body exercises is really paying

> off...in total I have gone down 4 1/2 inches on each upper arm, 3

inches

> on my neck, and 2 on my thighs. I am determined to keep it up. I get

> winded just sitting and doing them, but I try to breath in a rythmic

> manner...it's hard.

>

> I saw my rheumy today. He looked me over good and we talked quite

> awhile. He did give me an injection in my left wrist. He noticed the

> pinkish rash on my face, and talked about medication induced lupus. I

> doubt very much that's the problem but he ordered 9 lab tests. He

said

> he thought I should go back on the mtx. for now as the RA-PsA, etc.

is

> flaring and he's concerned about it getting too far advanced. They

are

> so sweet & kind to me there. I went to the lab and , another

> sweetheart, drew the labs but it took 4 or 5 pokes and 2 veins blew.

> She was upset with herself, but I wasn't as I know she tries to hard

and

> is so kind.

>

> I did something awful...Em & I had to pay rent so I sent her ino the

> credit union with money to get a counter check. The teller was just

> nasty with her and totally screwed up, putting our rent money into the

> wrong account. Poor Em, she came and got me...I was feeling so crummy

> and my patience level was low. The teller tried to blame Em for the

> confusion but the mistakes that were made could ONLY have been done by

> the teller...she accessed someone else's account with a similar name

to

> mine and divulged that person's account information, and wouldn't let

Em

> got the counter check even though Em has an account there as well. I

> was SO mad...I told that teller off and I even said she was

> " WORTHLESS " ...I meant to say her " help " was worthless, but I think I

> " Freudian slipped. " The manager came over and was really nice, but

when

> I got home I checked my receipts and one was from the OTHER person's

> account with their private account info on it. So, I need to call

ASAP

> in the morning and get this straightened out. Not that we couldn't

use

> the extra money...our rent got raised $30. a month, Em's hours are

down

> and we're still on a waiting list for Sec. 8 voucher. Anyway, I felt

> very bad for telling her she was worthless, that was awful. I know it

> would hurt me if someone told me that. And I hope the person with a

> similar name to mine doesn't have a heart attack if they see hundreds

of

> dollars missing before I can call in the morning.

>

> And poor Em...she is 25 and made her FIRST really & truly friend about

> 18 months ago. Em is my angel, but her disability does cause her to

be

> very overbearing and loud at times...she doesn't even catch it, and it

> has been so hard for her to make friends. Well, her friend, Shanel,

is

> moving to Wyoming next week, and for the past week or so has not

wanted

> Em to come visit. Em is crushed. She has been really close with

Shanel

> and her two little kids. Shanel is going through a lot of hard

personal

> stuff, but I am really disappointed in her for taking it out on Em.

>

> Joanne, I am SO happy for your good news! May your marriage and life

> together be greatly blessed.

>

> Our poor, beloved Debs! Golly, she doesn't need this!!! We all

prayed

> her through before, we'll do it again. I wish I could hold her little

> hand and pray with her.

>

> God bless little Dempsey with a very successful surgery & recovery!

>

> On a sad note...my cousin Bill just had a little grandson day before

> yesterday. They knew the baby had multiple birth defects, and he

faced

> many, many surgeries. At full term he was only 4 pounds. They named

> him after Great Grampa. He lived just under 24 hours. I know

he

> is healthy & well & happy with Jesus, but his mom & dad and big sister

> and grandparents are heartbroken. Please keep them in your prayers.

>

> I'm sorry this is a " book " , but I have to do things when I have a

spurt

> of energy.

>

> I read all the posts, but often am too pooped to do much else. I miss

> you all...the interaction we share.

>

> Love & Hugs to Everyone....

>

> Tess

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Dearest ...for a long time Dr's told me I had " sero-negative lupus " ,

then they changed their minds. I have various rashes off & on, so this

was hasn't really bothered me. I would really be surprised after all

this time if lupus showed up - but I suppose if it was induced by

medication, it's possible. It seems I never quite " fit the mold " for

certain diagnoses, but because there are a number of indications, the

Dr's are always concerned. The only diagnoses they have not waivered on

are RA, PsA, Sjorgren's and FMS. What do I think is wrong? Sometimes I

think there's cancer somewhere...sometimes I think it's just " me " and my

topsy-turvy autoimmune pot-pourri. I do still have swollen lymph

glands.

My meds: Actos, Glucophage, Humalog Insulin, Humalin N Insulin,

Lisinopril, levoxyl, furesomide, flexeril, paxil, wellbutron,

amitryptilin, klonopin, vicodan, megesterol, mtx, flovent, advair,

albuterol.

The credit union supervisor just called...she got everything all

straightened out and apologized.

I'm so tired.

I told Em, too, that I don't think Shanel means to take out her

frustration on her...this just has truly been a " milestone " in Em's

life, and she feels so bad.

She's going to spend part of the weekend with her oldest sister and

niece & nephew...that'll help.

Much Love...

Tess

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  • 2 weeks later...
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Hi Tess,

Well, I have finally gotten thru most of the mail. I have not written much

because my wrists is very painful from where they put the arterial line in.

My neck still hurts from the central line. This sepsis thing is no fun.

They feel that the sepsis is from pylonephritis but still feel that the

underlying problem is chronic osteomyelitis and for that they want to

amputate my leg.

I am going to call my original ortho and my ortho and see what their take is.

I find it hard to believe that this is my only option. The nurse from my

disability company called on Saturday and mentioned that when she worked at

the University of MN, they would start the patient on a rigorous antibiotic

home IV course to treat the myelitis. According to the nurse they had very

good results, this was given thru the infectious disease doctor. So I will

also look into that option.

I am glad that you are feeling a bit better. Those fevers are the pits. In

fact, that is what finally made me go to the ER via 911. My temp went up to

104.2 and I couldn't tell Ron from the cat !!!! Oops!

I am supposed to be on Kineret but in view of everything, I am afraid to take

a Tylenol that has not been prescribed. As it is, they have now discovered a

Lupus related clotting problem in my blood. So I a now the proud owner of a

prescription for Coumadin. Tomorrow I start going to my MD for the

regulatory blood tests. I feel a bit better, but still not myself yet. I

sleep a lot and have lost another 23 lbs. My appetite is nowhere back to

normal yet and my lips are all chapped and I have sores in the corners of my

mouth. Throat is still sore and schratchy from the NG tube that they had

down me and the TPN nutrition.

As I was reading all the posts, what struck me is the love on this board. I

am so proud of our daughters that they do this little favor for us by keeping

our friends posted on our condition. I know how blessed I truly am. My

church has also been a strong support for me and I plan to make all the

services during Holy Week.

I had a tiny bit of energy yesterday and went out and played the Easter Bunny

for the girls Ron and Vickie's boyfriend. I am looking forward to a very

blessed holiday on Sunday with family and friends.

I hope this trend continues for you my dear friend. Someday, I think we are

going to write a book together!

Love to you and Em,

Debs

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Debs

I am so relieved to see you posting. You have scared the " bej*s*s " out of all

here. do what they say to do. If you have a lupus like related clotting

disorder you may also want to check the Mayo Clinic in ville. They are

very good with that type of evaluation. Went to Rochester Mayo a few years ago

for a similar thing- they were great and they have consulted on surgeries I

have had since. Good team to have on your side.

Love, In Mich.

> Hi Tess,

>

> Well, I have finally gotten thru most of the mail. I have not written much

> because my wrists is very painful from where they put the arterial line in.

> My neck still hurts from the central line. This sepsis thing is no fun.

> They feel that the sepsis is from pylonephritis but still feel that the

> underlying problem is chronic osteomyelitis and for that they want to

> amputate my leg.

>

> I am going to call my original ortho and my ortho and see what their take is.

> I find it hard to believe that this is my only option. The nurse from my

> disability company called on Saturday and mentioned that when she worked at

> the University of MN, they would start the patient on a rigorous antibiotic

> home IV course to treat the myelitis. According to the nurse they had very

> good results, this was given thru the infectious disease doctor. So I will

> also look into that option.

>

> I am glad that you are feeling a bit better. Those fevers are the pits. In

> fact, that is what finally made me go to the ER via 911. My temp went up to

> 104.2 and I couldn't tell Ron from the cat !!!! Oops!

>

> I am supposed to be on Kineret but in view of everything, I am afraid to take

> a Tylenol that has not been prescribed. As it is, they have now discovered a

> Lupus related clotting problem in my blood. So I a now the proud owner of a

> prescription for Coumadin. Tomorrow I start going to my MD for the

> regulatory blood tests. I feel a bit better, but still not myself yet. I

> sleep a lot and have lost another 23 lbs. My appetite is nowhere back to

> normal yet and my lips are all chapped and I have sores in the corners of my

> mouth. Throat is still sore and schratchy from the NG tube that they had

> down me and the TPN nutrition.

>

> As I was reading all the posts, what struck me is the love on this board. I

> am so proud of our daughters that they do this little favor for us by keeping

> our friends posted on our condition. I know how blessed I truly am. My

> church has also been a strong support for me and I plan to make all the

> services during Holy Week.

>

> I had a tiny bit of energy yesterday and went out and played the Easter Bunny

> for the girls Ron and Vickie's boyfriend. I am looking forward to a very

> blessed holiday on Sunday with family and friends.

>

> I hope this trend continues for you my dear friend. Someday, I think we are

> going to write a book together!

>

> Love to you and Em,

>

>

> Debs

>

>

>

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hang in there tess, glad to hear you are still resting when you need it. i

would keep pushing them for answers and i would also stayy off remicade.

sorry honey....kathy in il

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Dearest Deb,

I am so glad to see you posting and equally glad that you are home with your

family. You have been through so much. Rest my friend and take care of

yourself. My prayers are with you.

Lynn MeMom

Auntblabbie2000@... wrote:

> Hi Tess,

>

> Well, I have finally gotten thru most of the mail. I have not written much

> because my wrists is very painful from where they put the arterial line in.

> My neck still hurts from the central line. This sepsis thing is no fun.

> They feel that the sepsis is from pylonephritis but still feel that the

> underlying problem is chronic osteomyelitis and for that they want to

> amputate my leg.

>

> I am going to call my original ortho and my ortho and see what their take is.

> I find it hard to believe that this is my only option. The nurse from my

> disability company called on Saturday and mentioned that when she worked at

> the University of MN, they would start the patient on a rigorous antibiotic

> home IV course to treat the myelitis. According to the nurse they had very

> good results, this was given thru the infectious disease doctor. So I will

> also look into that option.

>

> I am glad that you are feeling a bit better. Those fevers are the pits. In

> fact, that is what finally made me go to the ER via 911. My temp went up to

> 104.2 and I couldn't tell Ron from the cat !!!! Oops!

>

> I am supposed to be on Kineret but in view of everything, I am afraid to take

> a Tylenol that has not been prescribed. As it is, they have now discovered a

> Lupus related clotting problem in my blood. So I a now the proud owner of a

> prescription for Coumadin. Tomorrow I start going to my MD for the

> regulatory blood tests. I feel a bit better, but still not myself yet. I

> sleep a lot and have lost another 23 lbs. My appetite is nowhere back to

> normal yet and my lips are all chapped and I have sores in the corners of my

> mouth. Throat is still sore and schratchy from the NG tube that they had

> down me and the TPN nutrition.

>

> As I was reading all the posts, what struck me is the love on this board. I

> am so proud of our daughters that they do this little favor for us by keeping

> our friends posted on our condition. I know how blessed I truly am. My

> church has also been a strong support for me and I plan to make all the

> services during Holy Week.

>

> I had a tiny bit of energy yesterday and went out and played the Easter Bunny

> for the girls Ron and Vickie's boyfriend. I am looking forward to a very

> blessed holiday on Sunday with family and friends.

>

> I hope this trend continues for you my dear friend. Someday, I think we are

> going to write a book together!

>

> Love to you and Em,

>

> Debs

>

>

>

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Tess,

I'm so glad you are starting to feel better. You are long overdue. With

the fever you are still running, I also don't think it is wise to go back on

the remicade. You have to be completely well before even thinking about

taking anything that could make you more susceptible to infection.

I hope the fatigue passes soon. So glad you were able to drop one inhaler!

a

> Hi Dear People...I am slowly feeling better. My temp is staying under

> 100.5. I have dropped one inhaler, and most of the time it's ok. I am

> using 2 now, so that's an improvement. The worst part is the unrelenting

> fatigue...I get so tired from doing anything, or nothing at all. But

> I'm not going to fight it...I'm going to rest/sleep as I need to. Still

> not sure what to do about the RA etc., but I really don't think it's

> wise for me to go back on Remicade.

>

> We had my oldest daughter & grandaughter here for spaghetti today. We

> really had a good visit. The kids then went to the shopping center and

> I layed down for awhile.

>

> My chest still hurts...not sure why as xrays are ok. Anyway, I am

> making some progress. Thank you all for your steadfast love & precious

> prayers.

>

> All my love....

>

> Tess

>

>

>

>

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Now that a few hours have passed, any chance of posting better news,

Kathy, LOL? I am so sorry. When are you going to get a break (and Dan,

too)?

[ ] update

> well i made an appt with my dr because i was having chest pains and

> dizzyness. i figured my neck was messed up *i was due for the chiro

anyway*.

> but i figure that i'd be pretty dumb complaining of chest pains and

dizzyness

> and not go to the dr !! they tell me at the counter they no longer

accept my

> insurance and if i want to be seen it'll be a cash basis. so i am

seen, bp ok

> heart and lungs soung ok. he touches my rib cage and i almost yell. .

yep

> costchonditis again. then my son came into my work. he was kicked a

few days

> ago in school at gym during soccar. yes he has a fracture and now i

have to

> find a ortho to check it out. (i work for a podiatrist!!) he writes my

son a

> script to miss work and school. guess they are on top of things. they

called

> to verify how a foot dr writing a script for a broken arm!! i called

my

> insurance and the closest ortho covered is 25 miles away!! called the

# and

> it's disconected!! i got a paycheck yesterday for the month. no, not

sure if

> it will clear yet. i went to the chiro and now they tell me i have

capped my

> benefits for the year!!! waaaaahh~!!!! welcome to all the newbies, i'm

kathy

> 43 with a 19 year old son. inflamatory spondyloarthropy, reiters,

> fibromyalgia, glaucoma and diabetes. i take nexium, buspar, avandia,

mtx,

> flonaise, zyrtec, tylenol 3's and xalatan eye drops. people here are

great.

> they help you find the answers and understand where others don't.

kathy in

> il

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  • 2 weeks later...
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Hi JA!

Thanks for the good update on . I'm sure you'll notice significant rounding happening any day now if she's growing like she is. Glad to hear how well she's handling the band.

Yes, I remember Abby being in her band seeing all the looks from strangers, like "what the heck is that?" or "awwww, poor baby!". Like I always said, I'm sure I'd stare to not knowing what the band was for, heck I still stare and stalk people out when I see a banded baby in public - hehe!!

Have a great vacation to your home Australia!! Wow, I bet you are SO excited. I'm sure will do fine on the plane. Let us know how it goes when you get home.

Debbie Abby's mom DOCGrad MIja_oxford <ja_oxford@...> wrote:

Hi everyone,well life is so busy as always but I wanted to let you know how is progressing. She has been in her helmet (starband) just over 2 weeks now and has had no issues with it really. We went back to the orthotist on Tuesday and had another scan taken (this has proven to be the worst part of the treatment, she really hates being in that little box to get scanned) and the measurements showed the helmet is doing what it should. I think it all became clear to me how the helmet is working actually. It showed that her head has grown, and that the places where her shape is ok, it has not grown out, but where we want it to round out it has been growing. Finally, I understand what is going on. The helmet had a few minor adjustments for rubbing on her neck and forehead, but that was about it. We are still very happy with our decision to band. We are off to Australia (home for me ) for a vacation on Friday so the plane trip could prove testing. I'm thinking I may keep the helmet off for the 14hr leg of the trip, just for ease of handling her on the plane. We're very excited about her getting to meet so many family members though.Also, we went for a walk around the local lake today. She was having a good old time in the stroller, pulling her feet up to her mouth and prattling away. We got lots of smiles from passers by, but I also noticed that kind of quizzical look as well. I guess I would interpret it as the "what's wrong with her" look. It could just be me. Does anyone else get that feeling out in public?I did have a good experience though when I met a nurse who worked a pediatric ward and she knew exactly what the helmet was for and was asking all kinds of appropriate questions. That was a nice experience.Anyway, just wanted to say hi and say all is going well. We will be back in 2 weeks. Hopefully looking tanned and refreshed after our trip.cheersJAFor more plagio info

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Thanks for the update. I'm glad is doing so well in her helmet! Have a great trip!

Angie and Jenna (STArband grad)

update

Hi everyone,well life is so busy as always but I wanted to let you know how is progressing. She has been in her helmet (starband) just over 2 weeks now and has had no issues with it really. We went back to the orthotist on Tuesday and had another scan taken (this has proven to be the worst part of the treatment, she really hates being in that little box to get scanned) and the measurements showed the helmet is doing what it should. I think it all became clear to me how the helmet is working actually. It showed that her head has grown, and that the places where her shape is ok, it has not grown out, but where we want it to round out it has been growing. Finally, I understand what is going on. The helmet had a few minor adjustments for rubbing on her neck and forehead, but that was about it. We are still very happy with our decision to band. We are off to Australia (home for me ) for a vacation on Friday so the plane trip could prove testing. I'm thinking I may keep the helmet off for the 14hr leg of the trip, just for ease of handling her on the plane. We're very excited about her getting to meet so many family members though.Also, we went for a walk around the local lake today. She was having a good old time in the stroller, pulling her feet up to her mouth and prattling away. We got lots of smiles from passers by, but I also noticed that kind of quizzical look as well. I guess I would interpret it as the "what's wrong with her" look. It could just be me. Does anyone else get that feeling out in public?I did have a good experience though when I met a nurse who worked a pediatric ward and she knew exactly what the helmet was for and was asking all kinds of appropriate questions. That was a nice experience.Anyway, just wanted to say hi and say all is going well. We will be back in 2 weeks. Hopefully looking tanned and refreshed after our trip.cheersJAFor more plagio info

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Well it sounds like is doing great. Hooray!

Have a great visit to Australia - that should be a fabulous time!

Marci (Mom to )

Oklahoma

> Hi everyone,

> well life is so busy as always but I wanted to let you know how

> is progressing. She has been in her helmet (starband) just

> over 2 weeks now and has had no issues with it really. We went back

> to the orthotist on Tuesday and had another scan taken (this has

> proven to be the worst part of the treatment, she really hates being

> in that little box to get scanned) and the measurements showed the

> helmet is doing what it should. I think it all became clear to me

> how the helmet is working actually. It showed that her head has

> grown, and that the places where her shape is ok, it has not grown

> out, but where we want it to round out it has been growing. Finally,

> I understand what is going on.

> The helmet had a few minor adjustments for rubbing on her neck and

> forehead, but that was about it. We are still very happy with our

> decision to band.

> We are off to Australia (home for me ) for a vacation on Friday so

> the plane trip could prove testing. I'm thinking I may keep the

> helmet off for the 14hr leg of the trip, just for ease of handling

> her on the plane. We're very excited about her getting to meet so

> many family members though.

> Also, we went for a walk around the local lake today. She was having

> a good old time in the stroller, pulling her feet up to her mouth and

> prattling away. We got lots of smiles from passers by, but I also

> noticed that kind of quizzical look as well. I guess I would

> interpret it as the " what's wrong with her " look. It could just be

> me. Does anyone else get that feeling out in public?

> I did have a good experience though when I met a nurse who worked a

> pediatric ward and she knew exactly what the helmet was for and was

> asking all kinds of appropriate questions. That was a nice

> experience.

> Anyway, just wanted to say hi and say all is going well. We will be

> back in 2 weeks. Hopefully looking tanned and refreshed after our

> trip.

> cheers

> JA

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HI,

Glad to hear is rounding out! :-)

Have a great time on your vacation.

--- In Plagiocephaly , " ja_oxford " <ja_oxford@y...>

wrote:

> Hi everyone,

> well life is so busy as always but I wanted to let you know how

> is progressing. She has been in her helmet (starband) just

> over 2 weeks now and has had no issues with it really. We went

back

> to the orthotist on Tuesday and had another scan taken (this has

> proven to be the worst part of the treatment, she really hates

being

> in that little box to get scanned) and the measurements showed the

> helmet is doing what it should. I think it all became clear to me

> how the helmet is working actually. It showed that her head has

> grown, and that the places where her shape is ok, it has not grown

> out, but where we want it to round out it has been growing.

Finally,

> I understand what is going on.

> The helmet had a few minor adjustments for rubbing on her neck and

> forehead, but that was about it. We are still very happy with our

> decision to band.

> We are off to Australia (home for me ) for a vacation on Friday so

> the plane trip could prove testing. I'm thinking I may keep the

> helmet off for the 14hr leg of the trip, just for ease of handling

> her on the plane. We're very excited about her getting to meet so

> many family members though.

> Also, we went for a walk around the local lake today. She was

having

> a good old time in the stroller, pulling her feet up to her mouth

and

> prattling away. We got lots of smiles from passers by, but I also

> noticed that kind of quizzical look as well. I guess I would

> interpret it as the " what's wrong with her " look. It could just be

> me. Does anyone else get that feeling out in public?

> I did have a good experience though when I met a nurse who worked a

> pediatric ward and she knew exactly what the helmet was for and was

> asking all kinds of appropriate questions. That was a nice

> experience.

> Anyway, just wanted to say hi and say all is going well. We will

be

> back in 2 weeks. Hopefully looking tanned and refreshed after our

> trip.

> cheers

> JA

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Good to hear Jess. Now let's hope she sleeps a bit more comfortably tonite :)

Debbie Abby's mom DOCGrad MIklnim <klnim@...> wrote:

Hi All.Jess and I had our follow up visit today ror 2nd band. We were told that the mark on her forehead was probably from her sleeping a weird way and that we could put the band safely back on her since she did not show red spots for the first 5-6 days. This is good news. We did see the before and after pics and saw wonderful improvement for rounding of her head and flat spots. WE knew the ears had made only minimal correction and the pics confirmed this. Thanks all for support. Kim and Jess (banded 12/23 and 4/28)For more plagio info

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Kim,

Glad to hear all is well! Isn't it amazing when you really get to see

the correction? Please keep us posted on Jess' progress.

> Hi All.

>

> Jess and I had our follow up visit today ror 2nd band. We were

told

> that the mark on her forehead was probably from her sleeping a

weird

> way and that we could put the band safely back on her since she did

> not show red spots for the first 5-6 days. This is good news. We

> did see the before and after pics and saw wonderful improvement for

> rounding of her head and flat spots. WE knew the ears had made

only

> minimal correction and the pics confirmed this. Thanks all for

> support.

>

> Kim and Jess (banded 12/23 and 4/28)

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Great - glad to hear that the mark was really nothing. Sounds like

Jess is on her way. Keep us posted.

Marci (Mom to )

Oklahoma

> Hi All.

>

> Jess and I had our follow up visit today ror 2nd band. We were

told

> that the mark on her forehead was probably from her sleeping a

weird

> way and that we could put the band safely back on her since she did

> not show red spots for the first 5-6 days. This is good news. We

> did see the before and after pics and saw wonderful improvement for

> rounding of her head and flat spots. WE knew the ears had made

only

> minimal correction and the pics confirmed this. Thanks all for

> support.

>

> Kim and Jess (banded 12/23 and 4/28)

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Guest guest

Good luck!

Please update us when you can.

> Hey all, My computer is down so I won't be on for a while, but I

> wanted to let you know we were casted today. 's skull base

> assemetry was 5-6mm. Due to her age the ortho went ahead and

casted

> us today after our eval. We are expecting to get our STARband next

> wednesday. Wish us luck.

> Randi and (11 months)

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Guest guest

Randi:How did handle the casting? At least it's done & over with now & she'll be on her way to a rounder head very soon!

Debbie Abby's mom DOCGrad MIrandisue_98 <randisue_98@...> wrote:

Hey all, My computer is down so I won't be on for a while, but I wanted to let you know we were casted today. 's skull base assemetry was 5-6mm. Due to her age the ortho went ahead and casted us today after our eval. We are expecting to get our STARband next wednesday. Wish us luck.Randi and (11 months)For more plagio info

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Good luck Randi and ! Send us an update whenever you can!

Marci (Mom to )

Oklahoma

--- In Plagiocephaly , " randisue_98 " <randisue_98@y...>

wrote:

> Hey all, My computer is down so I won't be on for a while, but I

> wanted to let you know we were casted today. 's skull base

> assemetry was 5-6mm. Due to her age the ortho went ahead and casted

> us today after our eval. We are expecting to get our STARband next

> wednesday. Wish us luck.

> Randi and (11 months)

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Guest guest

Tess,

So glad you got to the bottom of the high wbc's. Now I hope they can figure

out why your anemia is getting worse. Your doctor really sounds like a gem.

I hope you feel better soon.

a

> Hi...my pcp saw me this morning. I do have a bladder infection, which

> she is treating. The anemia is 'iron deficiency anemia' though why it

> is getting worse we don't know. She is having me take an occult blood

> test, and doubling up on iron - which I already take 200% mdr of.

> Depending how things look, she may schedule an endoscopy or colonoscopy.

>

> The corners of my mouth at each side are tearing, so she ran tests for

> B12, niacin deficiencies. My voice is still weak and scratchy after all

> this time, but she thinks it's still related to the pneumonia et al. If

> it doesn't clear up soon, she says we'll explore that further.

>

> I'm pooped.

>

> Love...

>

> Tess

>

>

>

>

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Dearest Carol...I'm so glad your mom is doing fairly well. I sure wish

you felt better. Sending oodles of Oregon hugs and hopes for healing

for you both.

((((((((((((((((((Carol))))))))))))))))

Much Love, Always...

Tess

PS ~ Would you blow a kiss over to my precious Aunt June there in

Cumming?

: )

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I sent this yesterday about my mom, but I’m not sure it went through. She’s

doing better, and is ready to get up and walk today. Thanks for all of your

thoughts and prayers. As always, they worked!

Love,

Carol

Update

Hi Friends,

I really appreciate the prayers of so many of you, and they have been much

needed in the past 24 hours. My mom had her surgery yesterday and for the

most part things went well. The problem which arose was that her blood

pressure went down during the surgery, and they spent all last night and

most of the morning trying to get it up. It was hovering around 70/40 most

of the time, and got as low as 59/30. They were concerned that she might

have had a heart attack during the operation, and decided to move her to the

ICU if her cardiac enzymes were elevated or if she didn’t improve.

Fortunately, she turned around. Her BP is averaging 95/50 and has been as

high as 120/60. It’s still too low for them to try to get her out of bed,

though. Both the hip and knee have incisions that are around 8 inches, but

they look clean and well done. Her pain is being managed with a PCA and

some muscle relaxants. They said the third day will be the worst. I got

her a private room and I’m staying here the first three days. They have a

chair that folds out flat into a bed and it’s surprisingly comfortable,

although it’s virtually impossible sleep with so many people coming in and

out of the room all night. I’m feeling pretty crummy, and I must get some

rest tonight. Hopefully things will be quieter in here since she’s doing

better.

I’ll keep in touch.

Love to all,

Carol

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Carol,

I'm so glad your mom's surgery is over and she is ok. Her pressure drop was

scary, and I hope she is now stable and on her way back to an active life.

Take care of YOU too my friend. Sleeping in the chair doesn't sound so hot,

but I know you want to be close to your mom.

a

>

> I sent this yesterday about my mom, but I’m not sure it went through. She’s

> doing better, and is ready to get up and walk today. Thanks for all of your

> thoughts and prayers. As always, they worked!

>

> Love,

> Carol

> Update

>

> Hi Friends,

>

> I really appreciate the prayers of so many of you, and they have been much

> needed in the past 24 hours. My mom had her surgery yesterday and for the

> most part things went well. The problem which arose was that her blood

> pressure went down during the surgery, and they spent all last night and

> most of the morning trying to get it up. It was hovering around 70/40 most

> of the time, and got as low as 59/30. They were concerned that she might

> have had a heart attack during the operation, and decided to move her to the

> ICU if her cardiac enzymes were elevated or if she didn’t improve.

> Fortunately, she turned around. Her BP is averaging 95/50 and has been as

> high as 120/60. It’s still too low for them to try to get her out of bed,

> though. Both the hip and knee have incisions that are around 8 inches, but

> they look clean and well done. Her pain is being managed with a PCA and

> some muscle relaxants. They said the third day will be the worst. I got

> her a private room and I’m staying here the first three days. They have a

> chair that folds out flat into a bed and it’s surprisingly comfortable,

> although it’s virtually impossible sleep with so many people coming in and

> out of the room all night. I’m feeling pretty crummy, and I must get some

> rest tonight. Hopefully things will be quieter in here since she’s doing

> better.

>

> I’ll keep in touch.

>

> Love to all,

> Carol

>

>

>

>

>

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  • 4 weeks later...
Guest guest

Great to hear from you, Alan! How long were you in the hospital? I was

really starting to get worried, but please don't apologize for not

posting. You need to rest.

Why lupus tests?

I hope they can figure this out soon. I'm sure you are probably sick of

all the tests and wondering and feeling so rotten on top of it. I'm so

sorry.

[ ] Update

> Hi everyone,

>

> Sorry I haven't responded to many posts as of late. I am out of the

> hospital. My GI doctor was able to get the bleeding and pain under

> control. I am now on a low residue diet. I had a colonoscopy done and

> they found a huge blood clot and inflammation in my colon. The biopsy

> results came back yesterday and it isn't cancer. Could be a form of

> ascetic colitis but they aren't sure. My rheumy doesn't think it was

> caused by my meds. I will be having an MRI done on my abdomen next

> week to check my blood vessels. I am awaiting blood and stool sample

> results and hope to get some answers today. Interestingly enough, my

> rheumy is running tests for lupus.

>

> I also had an MRI done on my cervical spine because I am still having

> neck burning, cold and numb hands, sore shoulders, headaches behind

> the eyes, tingling arms, etc. Could be degeneration and some cranial

> settling. I am hoping to have the results back today.

>

> I am continuing to stay positive and have missed not being able to

> access our group. I hope all of you are doing well and I hope to be

> my old self in no time. Thank you for your kind thoughts and well

> wishes. It has meant an awful lot this past week.

>

> My love to all...

>

> Alan

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Guest guest

Hi ,

I was released on Tuesday. I had no idea my Rheumy even scheduled

those lupus tests. They were drawing blood twice a day. I am trying

to touch base with her and see what she is thinking.

Thanks for the kind thoughts. I really appreciate it.

Hugs,

Alan

> Great to hear from you, Alan! How long were you in the hospital? I

was

> really starting to get worried, but please don't apologize for not

> posting. You need to rest.

>

> Why lupus tests?

>

> I hope they can figure this out soon. I'm sure you are probably

sick of

> all the tests and wondering and feeling so rotten on top of it. I'm

so

> sorry.

>

>

>

>

>

> [ ] Update

>

>

> > Hi everyone,

> >

> > Sorry I haven't responded to many posts as of late. I am out of

the

> > hospital. My GI doctor was able to get the bleeding and pain under

> > control. I am now on a low residue diet. I had a colonoscopy done

and

> > they found a huge blood clot and inflammation in my colon. The

biopsy

> > results came back yesterday and it isn't cancer. Could be a form

of

> > ascetic colitis but they aren't sure. My rheumy doesn't think it

was

> > caused by my meds. I will be having an MRI done on my abdomen next

> > week to check my blood vessels. I am awaiting blood and stool

sample

> > results and hope to get some answers today. Interestingly enough,

my

> > rheumy is running tests for lupus.

> >

> > I also had an MRI done on my cervical spine because I am still

having

> > neck burning, cold and numb hands, sore shoulders, headaches

behind

> > the eyes, tingling arms, etc. Could be degeneration and some

cranial

> > settling. I am hoping to have the results back today.

> >

> > I am continuing to stay positive and have missed not being able to

> > access our group. I hope all of you are doing well and I hope to

be

> > my old self in no time. Thank you for your kind thoughts and well

> > wishes. It has meant an awful lot this past week.

> >

> > My love to all...

> >

> > Alan

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