Re: Missy - my personal story - Kathe

[Guest guest]

Hi Missy:

Your story of what you have gone through with your

daughter has really struck a chord in me. I really

can relate to what you are going through with your

little girl. My son, who is now 22, was born 3 months

premature. He was only 2 pounds. He was in the NICU

for 3 months in two different hospitals. He went

through so many very painful procedures during that

time, including his first heart surgery in which his

coronary artery tore and we almost lost him. After he

was released from the hospital, I had to tube feed

him, down his little throat, if he would not drink one

ounce of milk on his own - he had a heart defect, and

would practically pass out from exhaustion just trying

to get that one ounce down. If he could not do it,

down went the tube, and he screamed and cried and

tried his best to bat our hands away. It was

heartbreaking. We had to feed him every 2 hours for

the first few months.

At 5 months he caught a cold, developed pneumonia and

was back in the hospital, back on I.V.s. From that

time until he was a year, he was in and out all the

time with asthma and respiratory problems. I remember

holding him as he cried, to try and calm him down so

that his veins would not disappear from stress, he was

so tiny. I know how painful it is to not be able to

help your child, to take away their pain, and have to

sit there and say it's all right as a nurse or doctor

is poking away on them causing more pain. We never

left his side.

He had an emergency tracheostomy placed for a birth

defect of a narrowed windpipe when he was 4, and I

basically became a full time nurse 24/7. He hated to

have the trach suctioned and would cry and fight it,

and when I had to change the trach tube, the same

thing. When he was 6 he was placed in an induced coma

and had a rib grafted into the back and front of his

windpipe, they basically made him a windpipe, so that

the trach could be removed. He was in a very deep coma

for a week, and kept coming up out of it, to the

surprise of the doctors. He was, and still is, a

fighter, as I know that your little girl is too. Then

at age 6 he had open heart surgery to correct four

heart defects. And again, at age 18, he had what I

hope is his final surgery for a surprise birth defect

that we had been unaware of, a narrowing of his

intestine that almost killed him (again), but he came

through it once again.

He has been through so much, and it has made him such

a sensitive and caring young man. He is small, only

5'3 and maybe 115 pounds, and has only one working

vocal chord, but is working as a teacher of autistic

children, and absolutely loves it. These autistic

children, who don't like to be touched, hang all over

him. He can really relate well to people with any

sort of physical or emotional problems. People are

magnetically drawn to him, he has many friends, and

has helped so many of them through hard times. I think

this was the reason he was brought into this world,

and why he kept fighting all those years to survive,

God had a purpose for him. And God has a purpose for

your daughter too, I know.

My mom always told me that God does not give you more

than you can handle, and there were times that I

thought God had tapped on the wrong person, for sure,

but I made it. Like you said, a mother will do

whatever she has to do to take care of her children.

There is a strength within all of us that can be

called upon with the help of a higher power to do what

we must for those we love.

Kathe

--- MELISSA CRIGLER <nmsanders@...> wrote:

> Kerri,

>

> Wow thanks a lot Kerri, that's so nice of you to

> say I'm a good mother. I try to be, but sometimes I

> baby her a lot. She may need it sometimes, but she

> still wants me to do things for her when she's

> feeling better too. (she's a teensy bit spoiled ) I

> do have to say she never fakes pain though. She

> believes the more pain she has the more yucky meds

> she'll have to take.

>

> I do totally thank God that he has smiled on her.

> Thank God we found a great ped. rheum. as fast as we

> did. She could have gone mis-diagnosed for years as

> I've heard others at this web site have. I feel

> especially fortunate when we go to Children's

> Hospital. She has her Remicade IV infusion in the

> Oncology infusion center. I am fairly certain that

> every time we are there she is the least sick of all

> the children getting their IVs. On the way from the

> parking garage to the Onc center we pass children

> who are in special wheel chairs that you know are

> tailor-made and they are probably in them for life.

> We pass kids with burns, kids with missing limbs,

> kids with CP and Downs. I am grateful that she has a

> physical instead of mental disease. My

> step-grandaughter has CP and Epilepsy. I see how

> much my poor 23 year old step-daughter has to do for

> her and I am amazed at the fact that when your

> children need something you just DO IT. I don't know

> how many people ask me how I can cope. How

> can I give her shots and take her BP all the time.

> You know what?? " You do what you gotta do " is what I

> say. Any mom (well nearly any mom) will rise to the

> occasion, step up, and just do it.

>

> has been sick since she was two, so she

> can't really remember ever NOT getting IVs, shots,

> and yucky meds. Which may or may not be a good

> thing. Well, good I guess, she doesn't put up too

> much fight since she knows there are no options. She

> can never cry and get out of the situation. She's a

> trooper.

>

> I think the worst time ever that I can remember

> (thank God she can't - she was only two) was when

> she was her heaviest from the Prednisone. (Went from

> 29 lbs to 52 in two months). Her veins were very

> constricted and her arms were so chubbby that the

> nurses couldn't get an IV started. They said the

> numbing cream further constricted her veins so they

> wouldn't use it. They blew every vein on her poort

> little hands, arms, and feet. They must have tried

> eight times or so. Finally they said they were going

> to put one in her head or neck but decided to try

> the helicopter transport team instead. (They put

> them in while flying so a child laying semi-still

> should be no problem they thought). Well, after a

> fight they did get it in her inner ankle. I didn't

> even know you could put one there. She fell asleep

> almost right after they got it in, she was

> exhausted. They kept saying, " We'll give her a

> moment to calm down before we try again. "

> Translation: We have other patients and can't focus

> only

> on her. Which, I do understand, but every time any

> nurse would walk past our door she would get

> hysterical thinking they were coming in again. We

> just wanted it over with. I swear that day was the

> worst EVER. I can't believe I didn't have a nervous

> breakdown. They made me hold her the entire time,

> which thinking back I wanted to anyway since she's

> my baby. But, now they use numbing cream on her

> skinny little arm and usually only try once or twice

> to get the IVs in. OOh I'm rambling, sorry didn't

> mean to type this much. Thanks for the compliment,

> that really made me feel good.

>

> hugs,

> Missy

>

> kerri paquette <ksp2242@...> wrote:

> Missy,

>

> Sometimes, I must admit, that I do get the " why

> me " attitude. It seems as if I never can catch a

> break. But I am blessed. At 28 I have two wonderful

> children and a wonderful man in my life and I need

> to be grateful for those things and seeing you speak

> of your daughter reminds me of that. What a blessed

> child you have to have to suffer the way she must

> and still go on. She must be so strong to go through

> all of this and I'm sure that even though it doesn't

> seem so at times, that God is smiling down on her. I

> will keep you and your daughter in my prayers. Thank

> you for being such a good mother and showing us how

> it is done.

>

> kerri sue

>

> MELISSA CRIGLER <nmsanders@...> wrote:

> Hi . I'm new with this site also. My daughter,

> has JRA. She's six now - was DX when she was

> two. I have researched her disease since she was DX

> and I've learned more from this group in the two

> weeks I've been posting than I did when I researched

> it for the past four years. Very informative while

> at the same time supportive and NEVER judgemental

> (which with this disease is very important-a lot of

> prejudice with slow and dangerous scooter drivers

> lol and prednisone side effects and all {my 2 year

> old gained nearly 25 lbs in 2 months on Pred).

>

> By the way the docs put poor Emmie on 20 mg of

> prednisone a day for a week then taper to 15 mg the

> next week. She's been in a lot of pain - been

> flaring for about 2 weeks now. I hope she doesn't

> gain too much weight. Being in first grade, kids can

> be mean. She's very skinny now so she's got a little

> leway. Last time she was on steroids she was on them

> for a year and a half. She was on 40 and 67.5 mg of

> pred a day then. Has osteoporosis still and even

> grew blonde " fuzzies " on her face from it while the

> hair on her head and arms fell out from the

> Methotrexate (horribly ironic hugh?). It was awful,

> I'm so scared of what will happen this time. She's

> been sitting at the table with a cookie in front of

> her as a bribe waiting and stalling to take her

> Prednisone now. She can't swallow pills, so she has

> to take the liquid. It truly is horrid smelling. If

> I put it in anything when she's done with the meds

> she will never touch that food product again. She

> won't eat applesauce now or drink

> applejuice or chocolate milk either. Can just never

> win as a sneaky mommy.

> Well, mail ya later

> hugs Missy

> N2kids@... wrote:

>

>

>

> In a message dated 1/5/2006 12:18:40 PM Central

> Standard Time,

> mtbargeman30@... writes:

>

> Hi, guys. My name is . I was dx'ed with RA on

> Monday. I wonder if

> anyone can give me suggestions about how to take

> care of myself and

> fight fatigue. (I know that sounds whiny, but I

> really feel like

> roadkill). Also, should I tell my kids now, or wait

> til I get my

> regular meds for this? Does any one have any info or

> suggestions?

>

> Any info at all is appreciated.

>

>

>

> Hi and Welcome! I'm I'm fairly new

> here too and this group has

> been so helpfull! Please dont hesitate to vent,

> whine whatever youneed to

> do, we understand. here is a link to the main site

> that was given to me:

>

> _http://arthritissupport.info/_

> (http://arthritissupport.info/)

>

> there is tons of info and links on this site. Have

> you seen a Rheumatologist

> yet? Have they given you any meds? Tell your

> children if you feel they need

> to know. Hugs take care talk soon

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

[Guest guest]

It does strike a cord that only parents with special needs kids can

understand. My daughter was born with sickle cell anemia, Its very

hard to watch her go through all the pain, procedures constant

hospitalizations and in the back of my mind I know that some

day...this disease may kill her.

All it will take is a blood clot to her lungs heart, kidneys or brain.

At the same time these children show us the strong the human will to

like really is. No matter what they seem to bounce back somehow when

as an adult I don't think I could.

Toni

> >

> >

> >

> > In a message dated 1/5/2006 12:18:40 PM Central

> > Standard Time,

> > mtbargeman30@y... writes:

> >

> > Hi, guys. My name is . I was dx'ed with RA on

> > Monday. I wonder if

> > anyone can give me suggestions about how to take

> > care of myself and

> > fight fatigue. (I know that sounds whiny, but I

> > really feel like

> > roadkill). Also, should I tell my kids now, or wait

> > til I get my

> > regular meds for this? Does any one have any info or

> > suggestions?

> >

> > Any info at all is appreciated.

> >

> >

> >

> > Hi and Welcome! I'm I'm fairly new

> > here too and this group has

> > been so helpfull! Please dont hesitate to vent,

> > whine whatever youneed to

> > do, we understand. here is a link to the main site

> > that was given to me:

> >

> > _http://arthritissupport.info/_

> > (http://arthritissupport.info/)

> >

> > there is tons of info and links on this site. Have

> > you seen a Rheumatologist

> > yet? Have they given you any meds? Tell your

> > children if you feel they need

> > to know. Hugs take care talk soon

> >

> >

> >

> >

> >

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

> > removed]

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thank you Toni and Kathe for your heartfelt stories. How hard it must be for

both of you. Thank you so much for your support. Right now I just want her to

get over this bad flare - and off the Prednisone. She's just so sweet I can't

stand seeing her in pain. Thanks again for all your support.

Hugs

Missy

Ms radar <aclavern33@...> wrote:

It does strike a cord that only parents with special needs kids can

understand. My daughter was born with sickle cell anemia, Its very

hard to watch her go through all the pain, procedures constant

hospitalizations and in the back of my mind I know that some

day...this disease may kill her.

All it will take is a blood clot to her lungs heart, kidneys or brain.

At the same time these children show us the strong the human will to

like really is. No matter what they seem to bounce back somehow when

as an adult I don't think I could.

Toni

> >

> >

> >

> > In a message dated 1/5/2006 12:18:40 PM Central

> > Standard Time,

> > mtbargeman30@y... writes:

> >

> > Hi, guys. My name is . I was dx'ed with RA on

> > Monday. I wonder if

> > anyone can give me suggestions about how to take

> > care of myself and

> > fight fatigue. (I know that sounds whiny, but I

> > really feel like

> > roadkill). Also, should I tell my kids now, or wait

> > til I get my

> > regular meds for this? Does any one have any info or

> > suggestions?

> >

> > Any info at all is appreciated.

> >

> >

> >

> > Hi and Welcome! I'm I'm fairly new

> > here too and this group has

> > been so helpfull! Please dont hesitate to vent,

> > whine whatever youneed to

> > do, we understand. here is a link to the main site

> > that was given to me:

> >

> > _http://arthritissupport.info/_

> > (http://arthritissupport.info/)

> >

> > there is tons of info and links on this site. Have

> > you seen a Rheumatologist

> > yet? Have they given you any meds? Tell your

> > children if you feel they need

> > to know. Hugs take care talk soon

> >

> >

> >

> >

> >

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

> > removed]

> >

> >

> >

> >

> >

> >

> >