update

[Guest guest]

Hi gang,

Well, the insurance company finally agreed to pay for my new MS drug,

Copaxone. I thought that the cost for Enbrel was bad, Capoxone is even worst.

Fortunately, my co-pay through my Medicare insurance will only be $5.00 a month.

Medicaid gave Danny and I a ridiculous shared-of-cost amount each month of over

$1,500 a month between the two of us. It's insane. The hospital program that

Danny is in is pushing for a new insurance for him and once that goes

through, he will have full coverage for everything. I will only have to pay

$15.00

a month for his coverage. It cannot come soon enough for me. These

prescriptions are really killing me.

I had my EMG and it showed that I have bad neuropathy in both of my legs. My

right leg is worse than my left. The neurologist said that this condition is

not caused from the MS, but actually from the SD. It has a name, but I can

only remember the first two words, but not the second set. It's called CIBD,

chronic inflammatory is all that I remember. I do know that it has to do with

demyelinization of the nerve endings. Since I have this condition she put me

on Neurontin. Evidently the drug is beginning to work and I don't have the

pins & needles feeling as much and the burning in my legs is slacking off. I'm

still in the process of increasing the drug and while I'm still at a low dose,

I can tell the difference.

School starts on August 23 and I am returning despite everything that is

going on. I have my power chair and Voc Rehab paid to have a lift installed on

my truck. So, I have wheels and a cover, I can travel! LOL. My neuro is going

to put me on another medicine to help me with my memory. I can still go to

school and hopefully, with a little help I can make the grades. All I know is

that I can go and to the very best I can. No matter what it will be ok.

I've been having problems with my left foot. A few weeks ago I was taking my

garbage out and I caught my middle toe under a very heavy trash can. Ever

since then my left foot gets really red and swollen. I'm wondering if I may have

fractured something in my foot. I thought just my toe got caught, but it may

have been that part of my foot too. The whole thing happened so fast. My toe

doesn't hurt at all. I got to see my primary next week. If it's not doing

any better by then, I'll show it to him and get an x-ray.

Physically, besides my legs doing their thing, I'm feeling pretty good. I

have the same old aches and pains as usual, but I'm not having any fevers or

rashes. The fatigue will never leave me, but I don't allow it to slow me down.

I'm not the night owl that I used to be and I go to bed early. Two nights ago,

I was in bed at 8 p.m. LOLOL. Geez, I'm turning into an old fart.

I have had an entire week where I didn't have to go to a doctor and its been

heaven! Hopefully, all the tests are over with for awhile and I can relax.

I'm very nervous about starting the Copaxone. I'm relieved that an RN will be

here with me while I take my first dose. The side effects are supposed to

nasty and I will feel very safe having a medical professional close if I start

flopping around like a flounder. I wouldn't want to scare my Danny.

Danny has had a very rough summer. He's on four different medications now

and I think we have finally stabilized him. He likes the partial hospitalization

program he is in and is doing well there. Originally he was going to be

discharged on Aug 18, but I was told on Tuesday that they are going to keep him

there until September, possibly October. That's fine by me. Whatever it takes

to help him. I had the awesome experience of having a three minute

conversation with Danny and he had constant eye contact with me. Not once did

he drop

his eyes and look away. I had tears in my eyes. What an unbelievable change.

AND he is writing!!!! He wrote my name, my girlfriend's name, his Dad, and his

name. Plus, he can spell simple words, dog, cat, go, stop, his name, my

name, and I forget what else. They told me because I caught his problems at

such

a young age, that Danny will be able to be successful in his life. That's a

miracle. The change in him is incredible. I'm very pleased and proud of my

little guy. Oh yes and he has lost his first two bottom teeth. I had a blast

being the tooth fairy.

So, that's what's up in my neck of the woods. I'm hanging in there and

trying to be all that I can be. I have fun sticking my tongue out at the Dragon

and I have to think of a name for the MS now. In any case they will not win.

I'm still living life, even though it maybe a bit slower now. TTYL.

Much love,

Terry

[Guest guest]

Sorry being at the hospital is so hard on her. Hopefully she'll feel

enough to know to take it easy around her stitches. Good thing kids

heal fast!

Debi

[Guest guest]

cathy the link wouldnot open for me so lack what happened to her so

when you get of time can you explain of what happened to her to cause

of the seizure.

Sondra

[Guest guest]

Am glad the surgery is OVER for you, and I hope you're home and both

resting now. Have you got relatives around to help?

, I'm curious, did the hospital have pictures (pecs type) of

smiley faces and hurting faces to help express what level of pain

she's in? Similar to the incredible 5 point scale?

>

> Thanks everyone for writing... I lost my internet connection for

> awhile. slept well and is doing great this morning. I even got

> some sleep too! She has a very high pain tolerance and limited

> verbal ability so we're not sure exactly how much pain she's in right

> now. Just trying to keep her still is a challenge. They don't want

> her to rip her stitches. It's a very small incision and probably

> won't be much of a scar at all. We are going home today with a nurse

> because being in a strange setting is too much for her and she will

> do better at home. She will stay home from school for a week and

> then should be ok to go back.

>

> Thanks again for all the good wishes, love, prayers and support.

>

> Hugs to all,

>

>

>

[Guest guest]

,

I am in awe of your calm! Anytime my kids are in pain or in the hospital I've

been more tense than they are.

I am glad that the surgery seems to have been successful and wish a speedy

recovery. It's great that you have the option of taking her out of the hospital

setting, with medical support. I can imagine that being at home will make all

the difference in her ability to relax enough to recover fully.

Let's hope you can get some rest, too!

Traci

cathylynn2 wrote: Thanks

everyone for writing... I lost my internet connection for

awhile. slept well and is doing great this morning. I even got

some sleep too! She has a very high pain tolerance and limited

verbal ability so we're not sure exactly how much pain she's in right

now. Just trying to keep her still is a challenge. They don't want

her to rip her stitches. It's a very small incision and probably

won't be much of a scar at all. We are going home today with a nurse

because being in a strange setting is too much for her and she will

do better at home. She will stay home from school for a week and

then should be ok to go back.

Thanks again for all the good wishes, love, prayers and support.

Hugs to all,

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

Boardwalk for $500? In 2007? Ha!

Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

[Guest guest]

We have been thinking of you and . We hope she has a speedy recovery!

Hopefully you are getting a little rest too. We will keep you both in our

thought and prayers.

and Family

Re: update

,

I am in awe of your calm! Anytime my kids are in pain or in the hospital I've

been more tense than they are.

I am glad that the surgery seems to have been successful and wish a

speedy recovery. It's great that you have the option of taking her out of the

hospital setting, with medical support. I can imagine that being at home will

make all the difference in her ability to relax enough to recover fully.

Let's hope you can get some rest, too!

Traci

cathylynn2 wrote: Thanks everyone for writing... I lost

my internet connection for

awhile. slept well and is doing great this morning. I even got

some sleep too! She has a very high pain tolerance and limited

verbal ability so we're not sure exactly how much pain she's in right

now. Just trying to keep her still is a challenge. They don't want

her to rip her stitches. It's a very small incision and probably

won't be much of a scar at all. We are going home today with a nurse

because being in a strange setting is too much for her and she will

do better at home. She will stay home from school for a week and

then should be ok to go back.

Thanks again for all the good wishes, love, prayers and support.

Hugs to all,

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

Boardwalk for $500? In 2007? Ha!

Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

[Guest guest]

, WOW! I have been catching up on reading our group and was amazed

to hear of what has been going through! I had never heard of this

before. Thank you for keeping us posted on and this condition. It

really makes me think about my own child who is always mouthing things.

I am curious.....Did you know of this condition prior to the doctors

finding out by xray & ultrasound?

Give our love and support!

Shanna ('s mom)

[Guest guest]

Oh, , I can only begin to imagine what you went through in those two

minutes. She is OK, thank God, and so we can assume that the angels took her on

a

little flight for a few minutes to show her wonders and download her with

more miraculous music to share when she has processed it all.

Hugs

Melinda

************************************** See what's new at http://www.aol.com

[Guest guest]

Oh my goodness ! Took my breath away when I read about what happened to

in the OR. Glad that she is doing better. You sure had a scary

experience.

((((((((((((((((((((((((((( & ))))))))))))))))))))))))))))))

Pennie

Abby's Mom

************************************** See what's new at http://www.aol.com

[Guest guest]

Thanks Traci, and Shanna...

is feeling much better today. Even though she has an abdominal

incision, I can tell that the discomfort she had been experiencing

from the bezoar was much worse for her than what she is feeling now.

My greatest challenge remains getting her to sit still. She is an

incredibly active and fit child, who at 7 years old, gets up at 5

a.m. to go to the gym where she works out on the trampoline, runs 3

miles and does lots of intense muscle work, all before school. I

don't know how she managed with that mass inside her! Fortunately

she loves the computer and is busy using my laptop and I've also got

her keyboard on the bed so she can calm herself with her music.

To answer your question, Shanna, has actually had bezoars

before, but much smaller, and we were able to use massive doses of

enzymes containing cellulases to literally dissolve them, kind of

like human Draino! LOL I keep stuff out of her mouth when she is

with me, but even at night she will find things in her room to chew

on, and at school she is constantly finding strings, hair, plastic

and other things. Things have actually gotten better than when she

was a toddler, so I was shocked that this one was so large. I think

it may have been hidden and then dislodged and has been there for

quite some time. This is the first time she has had such extensive

radiology tests done.

I didn't mention this in my list updates because I didn't want to

upset anyone, but coded on the table and she was flatlined for

almost two minutes. They are still not entirely sure what happened

but does not seem to have suffered any permanent ill-effects

from it. I do wish she were able to tell me if she had a near-death

experience... I'm fascinated by those! I'm just so grateful to the

doctors and nurses who did such a great job working on her. As you

might imagine, those were the longest two minutes of my life.

Thanks again everyone for the thoughts and prayers,

and

[Guest guest]

Melinda,

sees and communicates with angels even on the earthly plane, so

I'm sure she had lots of company for those two minutes!

Hugs back to you,

> Oh, , I can only begin to imagine what you went through in

> those two

> minutes. She is OK, thank God, and so we can assume that the angels

> took her on a

> little flight for a few minutes to show her wonders and download

> her with

> more miraculous music to share when she has processed it all.

> Hugs

> Melinda

>

[Guest guest]

I wondered what the " touch & go " moments were. Have you considered

HBOT to offset the incident, just in case? You think it was from the

anesthesia?

Debi

[Guest guest]

Ditto from me too. Glad it's all over & hope she & you have a speedy

recovery.

Marie A

>

> Oh my goodness ! Took my breath away when I read about what

> happened to

> in the OR. Glad that she is doing better. You sure had a scary

> experience.

>

> ((((((((((((((((((((((((((( & ))))))))))))))))))))))))))))))

>

> Pennie

> Abby's Mom

>

>

>

> ************************************** See what's new at

> http://www.aol.com

>

>

>

[Guest guest]

Pennie, Debi and Marie,

It was an excruciating experience for sure, especially being alone at

the hospital. I just kept saying " please come back " over and over,

and she did.

Debi, although they say they don't have any idea why she arrested, I

do suspect the anesthesia. She had to have anesthesia one time to

have some baby teeth pulled, and it took them FOREVER to wake her

up. HBOT may not be such a bad idea....

Thanks guys,

[Guest guest]

I thanked God in the shower that survived even without prayers from

us. I am just so incredibly happy that she made it & will recover. Do you

have 24 hr nursing coverage for her? I hope so since that's what she would

have if she was in the hospital.

Take care,

Marie

[Guest guest]

That is so wild you mention this. Last spring Allie started drawing

all these pictures of angels. Some were just angels, some were of

angels holding the hand of a little girl. She told me they were " Allie

and the angel. " For about 3 months that's all she talked about & did.

Well, about time she stopped, a little boy with autism who is a friend

of ours started telling his family/friends about angels he could see.

He would point them out while we were standing there. A friend who is

a devout Christian would tell him not to be afraid, but evidently he

never was.

Ever read " Autism and The God Connection? " He talks about how our kids

tend to be gifted in heavenly viewpoints because of their innocence.

Some of it was a bit much for me to know if I definitely agreed or

disagreed, but it does make me wonder about those angels...

Debi

>

> Melinda,

>

> sees and communicates with angels even on the earthly plane, so

> I'm sure she had lots of company for those two minutes!

>

> Hugs back to you,

>

>

[Guest guest]

Debi I to have had some tell of me this same things in regards to me of

being much close to things of spirtual aspects than one would be

normally and I to lack if that is of true for self but do feel it is

because I to might blurt out more my thinking where as typicals might

experience somethings and never share of it. In my past had of very

strong visions as was not in a sleep but in a deep state of being

internally , and not connected externally to my world around me but

only my internal states and had of visions of the angels dancing with

me holding me and having words to me and healing of parts of me with

the stirring of her hand over me. it was of the most profound of all

peaceful feelings ever experienced in the life of me and this happened

a few times in the life of me and I to hear within me a voice not like

a human voice is to be but a visual voice within me and often it is of

a peace within me too. I to see the world very differently but do not

feel I to be of with any special powers or ways of being, not sure if

can explain of this in my own words.Sondra

[Guest guest]

I look at it like this, too. If you do have a special spiritual

connection, it would be a very natural experience, so to you it may

not feel unusual because it's so natural. Did the visions of the

angels speaking over you happen during profoundly difficult times in

your life?

I had a dream once that I liken to a near-death experience. In my

dream, I was in a car wreck & all I could hear was my breathing &

heartbeat. My breathing got slower, me heartbeat got slower as I got

out of the car, which had wrecked in front of a cemetery near where I

grew up. At that moment I realized I had died and the world around me

got very dim & I saw a tunnel of light. Then suddenly it was like I

was shot through it like a bullet going through a gun and in an

instant I was in nothing but white with Jesus standing there with his

arms open. I fell on my face in worship & then said, " My girls need

me. " Then I woke up, but the feeling I had was so intense, it felt

like the Spirit of God was upon me, surrounding me in the room and my

eyes had tears flowing as if I was crying my heart out, but I wasn't

crying at all. Maybe just a dream, maybe something else, I dunno. I

feel like there was a message because it was about a month after that

when we started getting testing on Allie, but I don't know for sure

what the meaning was, maybe to sure up my faith for the long days that

followed.

>

> Debi I to have had some tell of me this same things in regards to me of

> being much close to things of spirtual aspects than one would be

> normally and I to lack if that is of true for self but do feel it is

> because I to might blurt out more my thinking where as typicals might

> experience somethings and never share of it. In my past had of very

> strong visions as was not in a sleep but in a deep state of being

> internally , and not connected externally to my world around me but

> only my internal states and had of visions of the angels dancing with

> me holding me and having words to me and healing of parts of me with

> the stirring of her hand over me. it was of the most profound of all

> peaceful feelings ever experienced in the life of me and this happened

> a few times in the life of me and I to hear within me a voice not like

> a human voice is to be but a visual voice within me and often it is of

> a peace within me too. I to see the world very differently but do not

> feel I to be of with any special powers or ways of being, not sure if

> can explain of this in my own words.Sondra

>

[Guest guest]

,

{{{HUGS}}} to you and your family. Please keep us posted. Gwen

Update

I feel like you all have been in on all of this stuff with my DD and her

genetic disorder she was diagnosed with this summer. I just wanted to let you

all know that they found a nodule in her thyroid on Friday and because of the

increased flow to the area they feel there may be a malignancy. I am trying so

hard to hold it together. I was doing better yesterday and today I am all tears

which I am trying to choke down so the kids don't see. I know we all deal with a

lot all of the time and we always end up finding the strength to do what we need

to do. I just want you all to know that even though I don't post a lot I read

everything every day and I gain knowledge and strength. Thanks,

[Guest guest]

Our thoughts are with you and your family. Keep us updated. How long before

you know more?

Pennie

Abby's Mom

************************************** See what's new at http://www.aol.com

[Guest guest]

I am so sorry. That is very hard to go through on top of everything else. Keep

us posted.

hekrug wrote: I feel like you

all have been in on all of this stuff with my DD and her genetic disorder

she was diagnosed with this summer. I just wanted to let you all know that they

found a nodule in her thyroid on Friday and because of the increased flow to the

area they feel there may be a malignancy. I am trying so hard to hold it

together. I was doing better yesterday and today I am all tears which I am

trying to choke down so the kids don't see. I know we all deal with a lot all of

the time and we always end up finding the strength to do what we need to do. I

just want you all to know that even though I don't post a lot I read everything

every day and I gain knowledge and strength. Thanks,

[Guest guest]

, I hope you all get through it quickly and as painlessly as

possible. If it helps, my anatomy's instructor's wife had most of her

thyroid removed for similar reasons at age 17. She's now in her late

40's - early 50's. I don't know the accuracy of this, but my

instructor said as long as they leave a small amount of the thyroid,

which they could probably do, then the remaining tissue can take over

a lot, sometimes all of the entire gland. Again, don't know how

accurate, but may it give you hope!

Debi

[Guest guest]

We have an appointment next Friday with the surgeons. I know it is actually

quick to get in but it doesn't seem quick enough for me. The surgery will

hopefully be in the week or two following. ( I hope!) The Dr. this morning said

they will take some of the tissue out at the beginning of the surgery and send

it down to the lab for a quick answer to see if there is cancer. That way they

can do other things if necessary. One of the things that is freaking me out is

that when we got the genetic disorder diagnosis they said several times as long

as there are no metabolic changes in her body she should be fine but now she has

these changes so what does that mean? I guess we will find out more soon. Thanks

for your support.

Re: Update

Our thoughts are with you and your family. Keep us updated. How long before

you know more?

Pennie

Abby's Mom

************************************** See what's new at http://www.aol.com

[Guest guest]

I'm so sorry to hear of this scare. These days waiting must feel like an

eternity for you. I have a friend that had thyroid cancer. I remember it

feeling like that with my friend.

In her case they initially tried to leave some of the thyroid. But it was so

hard to regulate it that they later went back and removed the rest. But,

hopefully in your dd's case they won't have to remove anything but the nodule.

Keep us posted.

Re: Update

We have an appointment next Friday with the surgeons. I know it is actually

quick to get in but it doesn't seem quick enough for me. The surgery will

hopefully be in the week or two following. ( I hope!) The Dr. this morning said

they will take some of the tissue out at the beginning of the surgery and send

it down to the lab for a quick answer to see if there is cancer. That way they

can do other things if necessary. One of the things that is freaking me out is

that when we got the genetic disorder diagnosis they said several times as long

as there are no metabolic changes in her body she should be fine but now she has

these changes so what does that mean? I guess we will find out more soon. Thanks

for your support.

[Guest guest]

Thank you for your concern. They are planning on removing her whole thyroid.

With her genetic disorder and the thyroid being a " hot spot " for cancer, and her

having a nodule already it is much less risky for her to not have a thyroid at

all. I will keep you posted.

Re: Update

We have an appointment next Friday with the surgeons. I know it is actually

quick to get in but it doesn't seem quick enough for me. The surgery will

hopefully be in the week or two following. ( I hope!) The Dr. this morning said

they will take some of the tissue out at the beginning of the surgery and send

it down to the lab for a quick answer to see if there is cancer. That way they

can do other things if necessary. One of the things that is freaking me out is

that when we got the genetic disorder diagnosis they said several times as long

as there are no metabolic changes in her body she should be fine but now she has

these changes so what does that mean? I guess we will find out more soon. Thanks

for your support.