Conference moira::parenting

    Dottie,
    
    All you can do it be there to listen if they need you!!!!  My niece has
    had a similar thing happen to her, she is now 13 and not much more can
    be done for her, cosmetically.  She has terrible scarring on her face
    and her left breast area... they are not sure that side will develop
    normally! (her accident happened just before her 3rd birthday)
    
    One suggestion... and this may save the family lots of heartache, at
    least financially... plus they will have people to talk to... get ahold
    of the Shriners..... they had approved Samantha for all of her surgery,
    until she found out that it isn't like the movies... she would always
    have some kind of scarring.  She opted not to have anything done right
    now.... 
    
    "Your" baby sounds like a good candidate for the help and wonderful
    work the Shriners do..... and I guarentee you.. they will NOT pester
    you for donations to help out... that is not why they are there.. they
    are there for the kids!!!!
    
    If you need a contact, let me know... my mother is in Colorado, but she
    got in touch with someone about Samantha, and Sam in in Florida.  
    
    My thoughts and hopes go out for you all!!!
    
    M-L Belforti 

    Dottie, first please contact me off line for further info.
    
    I have had direct contact with the Boston Shriners Burns unit in the
    past.  There are Shriners' hospitals all over the country. 
    Unfortunately not all are for burns, a good deal of them are for
    crippled children.  I belong to one of the sponsoring agencies of these
    hospitals and can give you a name to contact for assistance.  It's one
    of those places I frequently donate in memory of someone.
    (There are many more details in the Masonic notes file)
    
    On a personal note, my cousin was hospitalized for over two months when
    he was only a toddler.  His burns were caused by tripping over a coffee
    pot cord.  He spent almost 3 months at Boston City Hospital, my cousin
    is now in his early 30's and even with so little they could do "back
    then", he has very little scaring.  But they did have to keep him
    sedated and on his tummy most of the time.  Fortunate for the younger
    burn victim is that as your body grows, so does the skin.  From my
    experience, the younger the victim the more complete the recovery.
    Maybe somewhere down the line you might want them to come stay with you
    to utilize the Boston unit during the rehabilitation proceedures.  My
    guess though is that the baby is probably in a hospital with a special
    burn unit.
    
    I can offer you my prayers and support.  But I would probably bet the
    Shriners' hospital has got to have several good pieces of literature
    for both you and the baby's mother to read.  The mom might also seek
    out the help, from within the hospital, of their psycological staff. 
    Most larger hospitals have a "trauma psycologist".  I utilized one at
    UMass Medical, after the roller coaster of all of AJ's surgeries.  He
    was literally a life line for me.
    
    You might sent them a gift certificate to a restaurant near the hospital.
    There must be some nationwide chain nearby, or maybe they've been to 
    something nearby and you could write the place enclose a check and ask 
    them to send the parents the gift certificate directly.  For me it was 
    like a new beginning just to get out of the hospital for a couple hours to 
    a non-antiseptic environment.  I really felt "guilty" leaving, but the
    staff was wonderful, and usually would assign a nurse to stay right
    beside his bed while we were out.
    
    Please keep us posted, we're all in this together!
    Lyn

    One more vote for the Shriner's. I don't know whether they have a Burns
    Institute in Utah but they do have one here and they do treat children
    from all over the world.
    
    I don't know how you help the mom but maybe the Shriners' Hospital here
    would have a suggestion. They have so many parents in similar
    situations, so many in worse...like the mother whose burned toddler
    wanted to know why mom had saved the baby from the fire and not him..
    They must have some way of helping these parents through.

Jim and I talked with his cousin (Melanie) last night.

Seems that the (burn) doctor recommended delaying surgery (from yesterday)
until Wednesday in the hopes that he sees some "skin" improvement.  The
doctor would like to avoid skin graphing the face, as he believes cosmetic
surgery has much better results when working from natural scarring than from
skin graphing scarring ... so they're hoping that the skin will show some
signs of "reproducing" (new tissue?) - thus avoiding skin graphing
to the face.  The finger(s) will still need to be
operated on (tip(s) removed and skin graphed), but they want to wait to
see how the face is doing - should they need to skin graph the face, they will
do "all" surgery at the same time.

Melanie said the baby has a full year of daily therapy ahead of her (stretching
the fingers to keep the tendons and nerves moving), as well as the burn
treatment (cleansing and bandage changings).

Melanie was able to bring the baby home with her yesterday (although they
return daily for therapy and will return on Wednesday re: surgery -- which
will be a minimum 5-day hospital stay).

Melanie is going to ask the burn specialist if they can try the Tylenol
suppositories, since Lauren spits out most of the liquid Tylenol and cries
and screams (in pain) so much.

Melanie said she's still dealing with a lot of guilt, although she's now changed
her attitude to take it "a day at a time" and stop thinking about the long
haul ahead of them -- which was overwhelming and heart-wrenching.  She's
trying to concentrate on "success" stories and accept what's happened and be
there for Lauren (Melanie dropped out of her last college semester and job to
be available fulltime for the baby).

Melanie's still looking for suggestions and help in "how to deal with the
baby's pathetic, heart-wrenching screams, cries and sobs".  I told her that
lots of hugs and love AND TIME (and possibly Tylenol suppositories) is all
I could suggest.  I sure do wish we were closer so we could hug and cry
together!  Melanie has a terrific family and three sisters (two of which are
young mothers, too) who are there for her.  One sister's husband is a resident
cosmetic surgeon (in Virginia) who has provided her with a lot of guidance
and support and assures her that he'll do any and all future surgeries "free
of cost" when he's a full-fledged cosmetic surgeon (5 more years).

So, we should know more on Wednesday ... but sounds like this will be an ongoing
day-to-day thing for a year, with potential surgeries of several years.

Please remember Little Lauren, Melanie and her family in your prayers.

Thanks for all your support and suggestions!  Any and all further suggestions
are greatly appreciated.

Dottie

PS:  They are at the University of Utah Burn Center

And thanks for the many suggestions to seek "counselling" ... I never
thought about that!

We'll be calling Melanie again on Wednesday and I'll be sure to mention
it to her.  I'm sure she'll look into it.

Dottie

    Back in the 70's I did some work with the Shriners.  If memory serves,
    their services are free.  And not based on income - free, period.  And
    you do not have to have any Masonic affiliation either.  The only
    "requirement" is that you need their service.  

    Lyn:  Since you are currently involved with something Masonic, maybe
    you could confirm or deny my statement.

RE: .6

>>							If memory serves,
>>  their services are free.  And not based on income - free, period.  And
>>  you do not have to have any Masonic affiliation either.  The only
>>  "requirement" is that you need their service.

Yes...the above statement is 100% CORRECT.

David

    As much as I "note"  I've never figured out how to transfer one note to
    another, so I will rewrite the response I received in the Masonic Notes
    files, thanks to a "Brother" (NETCAD::TARBET)
    
    There are 3 Burns Institues:
    	Boston, Cincinnati, Galveston
    
    Have them ask any Shriner for assistance or call 1-800-237-5055.
    
    There is typically multiple phases of treatment.  Only the Burns
    Institutes are prepared to treat the burns from a medical aspect. 
    Wherever and whenever possible, the Shriners' Hospitals will try to
    arrange as much therapy and corrective work close to home.
    Rehabilitative physical therapy and ncecessary plastic surgery might
    well be handled locally at the Salt Lake Unit.
    
    From me personally, a coworker here recently had an extremely rough
    delivery of her twins, she was in desperate need of blood transfusions. 
    I received a call from her father at 9 in the evening, by 8:30 the next
    morning she had 4 units ready for transfusion, with 14 donors standing
    by should the units be needed.  She ultimately did use 4 units and is
    still recovering at home over 12 weeks after delivery.  I only had to
    make a call to our local Masonic lodge for assistance.  These guys are
    truly great!  This was all provided free of charge.
    
    By the way these hospitals are generally open to the public for tours. 
    The one in Springfield MA, for crippled children is brand new, and only
    dedicated a few months ago.  It's near our SPO facility.  And to say it
    again, these services are provided free of charge, and you are never
    solicited for any donations ever!
    
    Lyn
    

Thanks, Lyn!

I'll  pass this info (along with the counselling suggestion) to Melanie
Wednesday night.   I'm sure she'll be very appreciative of the suggestions
and support.

Thanks again.
Dottie

    Just one more story...
    
    My brother's brother in law was burned in a car accident when he was in
    college. It was pretty difficult for him, his family, and his friends
    to deal with the scarring. It was literally years before he went out in
    public. When I met him, and for years afterwards, I noticed the scars
    but...
    
    You know the really remarkable thing is that my brother's children, as
    they came along, did not notice. Uncle Robbie was my neice's favorite.
    In fact, she was disappointed to learn that he was not her godfather,
    jealous that he is her brother's godfather.
    
    The point I am trying to make is that the child can grow up to meet
    other children who will accept her as she is. They REALLY won't notice
    unless the adults point it out.
    
    I'm sure Melanie can connect with the parents of other burn victims and
    of other children with special circumstances. It is difficult but there
    is a lot of support to be gained from other parents who have had to
    deal with their own realities and are grappling with balancing the
    medical requirements along with the other family requirements. My
    daughter has had small difficulties which overhwelm me until I realize
    that there is so much which is not impaired, so much that is still
    normal, so much for which to be grateful.
    
    Tell Melanie we are praying for her. Her baby's pain is severe now but
    it will pass.                                                 

    RE: scars etc
    
    My son was born with a large purple birth mark on his left fore arm. 
    The purple color has since faded to a tinge of pink.  His arm, however,
    has the look of a huge burn scar.  I have had people ask me if he was
    burned as a child.  Now this is not the face, I know, and sometimes
    those scars are more emotionally painful, but just to let you know I
    propbably get one or two comments a year about the scarring.  Most
    people don't even notice. 
    
    We have a friend whose daughter was born with a brown birthmark that
    goes down the neck, some back and the arm.  It looks like one huge
    freckle.  I don't know if they receive more comments - probably, but
    the girl is very easy about it (she's now 4).  
    
    Things will probably change when they get into their adolescent years -
    but for now it hasn't been a big problem.
    
    I wish the family all the luck and love they can muster to get thru
    such difficult times.  Things like this do make a person stronger! 
    I've seen it happen!
    
    -sandy
    

    Dottie,
    I don't have any suggestions or tales to relate, but 
    I just wanted to tell you that I feel deeply for little Lauren,
    Melanie, and your whole family. What a terrible thing for all
    of your family!
    Please keep us posted.
    
    Monica (with tears in my eyes)

    
    One thing that hasn't been mentioned yet. Have the parents looked for a
    support group? Shriners may know of one in their area, it might be
    associated with a rehab center or therapy unit.
    
    Many people, like myself at one time, have misconceptions about support
    groups. A successful support group can be the best counseling you can
    get. They will meet other parents who have been through this ordeal,
    and especially, meet other children who are in the various phases of
    recovery. It will help them prepare for what lies ahead, not from a
    doctor, but from other people in the same situation. 
    
    My hopes and prayers are with you,
    
    Chris
    

    If I'm not mistaken, there is a nationwide burn victim support group
    called The Phoenix (as in 'from out of the flames').
    
    You might want to have Melanie and/or family check into that.
    
    
    Jodi-

    Dottie, what the latest....and I can only hope it's optimistic news? 
    Wasn't there more surgery scheduled last week or this?
    
    
    Lyn
    
    (Jon said he saw you, and sends his love and support your way too!)

Thanks for all your suggestions and support!

I am so embarrassed to say I haven't called Melanie!!!  Surgery was scheduled
for last Wednesday (they were hoping they did NOT have to skin graph the face,
but surgery to the finger(s) were a given).

Been a wild week ...
My cousin (mid-20's) died last week;
Jim had an office BBQ at our house on Friday;
the adoption of our second child is following the "rocky adoption roller
	coaster" to a "T";
my in-laws came over on Saturday to finish up all the BBQ leftovers (thank
	goodness!);
I babysat a 3-year old on Sunday (it was great, Juli and Elizabeth tormented
	each other, leaving ME ALONE!);
and Jim's Dad lives "within miles" of the California earthquake (yesterday).

What day is this?

I hope to call Melanie tonight.  Will keep you posted. 

Thanks again my NOTER friends.  (Now, if I can just figure out what day of the
week this is ...).

Dottie

PS:  Hi to the Tripp's!

    Dotti,
    
    I cant't stop thinking about how everyone is doing. Might you have a
    update for those who are following this note very closely.
    
    My prayers are with you and your family, and specially Little Lauren.
    
    Lynne

Thanks NOTERs for all your support, prayers, thoughts, etc.

We have good news ... Little Lauren did not require facial surgery (graphing).
I also believe they have decided to postpone the surgery to remove the tip(s)
of her finger(s), since they, too, are generating new skin and appear to show
some signs of healing.

Lauren will still need daily physical therapy to keep her hand/fingers "moving"
(nerves, tendons, stretching of the skin, etc.) ... and will definately need
facial cosmetic surgery "down the road" (not clear when ... although her Uncle
Jed - the resident doctor, who should be a full-fledged cosmetic surgeon when
Lauren is about 5-6 years old, suggests waiting until "just before" she enters
school and is optimistic that although there will always be permanent scaring,
greater improvement is usually derived when working from damaged skin and not
skin graphing ... so he's pleased they didn't skin graph Lauren's face).

Melanie (mother) is doing better, although she'll always carry some baggage of
guilt.  She dropped out of her final semester of college (but remains committed
to return to college after the daily therapy treatments are completed).
Melanie has one of the best families and LOTS of support and love ... and I
believe this has been the best medicine for both her and the baby.  They pull
together during times like this and make themselves available to assist and
help -- her family will put the baby and Melanie first.

The baby has stopped the continous whining and sobbing and now just cries during
bandage changing, therapy ... and the usual baby stuff.  Melanie said that has
been a big relief!

Well, should our second adoption occur in September, we were told it's definately
a boy (right!, they told us that with Julianne ... in fact, we were told TWIN
BOYS ... and got ONE GIRL!).  Needless to say, I've been stockpiling Julianne's
clothes and told Melanie I'd UPS a "little girl's wardrobe" to her in the next
few days ... and she was delighted ... funny how the little things that don't
cost you anything (or so little) can mean so much to someone else!  Her two
sisters each have baby boys, so although she gets baby hand-me-downs, they are
ALL BOY clothes ... and Melanie thinks seeing her baby dressed "feminine" will
help her (Melanie) overlook the facial deformity a little.  I also thought I
might pick her up a real cutsie little girl's hat and some hair bands, along with
a musical crib railing toy and a stuffed doll (or bear).  I hope to get these
packaged this weekend.

Again, thanks so much for your prayers, support, suggestions, etc. ... I do
believe God heard every one of them!!

Bless You.
Dottie

PS:  Keep bugging me for updates ... I'm so busy and forgetful these days!

    Dottie,
    
    I was wondering if you have any updates for us?  How is Lauren doing?
    Please keep us posted.
    
    Joyce

    I was wondering the same thing. How is the family doing?
    
     Lynne

Jim's folks (and kid sister) are vacationing in Park City, Utah (which
is - I think! - an hour's drive from Salt Lake City (where Melanie's parents
live), so I feel pretty confident that my MIL and Melanie's Mom (they are
sisters) will be getting together over my inlaw's 2-week vacation.  In fact,
I suspect they'll have some kind of family get-together and my inlaws will
get to visit with both Melanie and the baby (so I'll have more news in
another two weeks).

We did send two BIG boxes of "all-girl" clothes to Little Lauren and Jim
called to warn them it was sent via UPS (because I forgot to sign the line that
says "drop off, no signature necessary").  Melanie answered the phone and
was in very good spirits (because the surgery has been canceled).  She's
taking a year off work and school (last semester of college!) to do the
daily runs to the physical therapists and many doctor's appointments.  They
feel quite confident that the baby won't require surgery, but will definately
have scars (not all of which can be corrected via plastic surgery) and loss
of feeling (and maybe use) of the tips of 1-3 fingers.

Melanie's sister's husband (resident doctor) is hopeful he'll be a full-
fledged cosmetic surgeon by the time Lauren is preschool age, so he can do
(or assist) with cosmetic surgery.  It's a very close-knit family and they'll
cross the world (if necessary) for each other.

The baby is returning to normal ... pain has subsided now that the wounds
have closed over.  I also think the shock of the disfigurement has lessened a.
bit.  I also suggest that Melanie buy the baby some hair bands or hats ... in 
fact, I should pick up a few and mail them, as I really love picking out little
girl's infant hats!  Melanie said she wants to use this "time off" (one-year) to
really bond and enjoy the baby ... and be there with her daughter
through all this.

I thought Jim would call out there last night (maybe catch his folks at
Melanie's Mom's house), but I think Jim forgot.  He'll be calling tonight
or tomorrow night.

So I should know more in another day or so ... and lots more when Jim's folks
return (in 2 weeks).

Thanks so much for your thoughts, prayers, suggestions ... you NOTERS are the
greatest!  Melanie made note of many of your suggestions, too.  This NOTESfile
is a terrific support group for parents!

Thanks again.
Dottie

Update ...

I talked with Melanie's Mom this past weekend (Jim's parents and kid sister is
out there vacationing).

Well, in 3-4 months, the baby will have surgery -- skin grafing (sp?) to her
fingers and face ... because the new skin is "too raised" (so I'd sure
appreciate any explanations/suggestions from you NOTERS!).

I guess this was disappointing news ... but the baby is doing very well.
Their concern is now that the baby is starting to feel comfortable and return
to normal play and behavior and happiness, they're going to have to put her
through another painful ordeal.

I guess it's going to be a physical and emotional roller coaster ride for
at least a year ... and then again (when they do cosmetic surgery), probably
preschool age.

NOW ... in addition to this, Jim's kid sister (9 years old), fell off "a bike"
(at the vacationing condo in Park City) and splintered her arm, requiring
surgery to add two plates (which will be removed in 6 months).  
Jim's Mom is taking this very well, Jim's father is a basket case ... 
and Jim's brother (31 years of age) says "well, now Cat has something to 
LITIGIMATELY complain about and demand attention for!"  GEESH!
Never a dull moment!

Jim's family will be home (I think!) this weekend, so we'll probably give them
some time/space to readjust ... but we will call them ... so I should know
more this weekend.

Dottie

    Dottie, 
    
    It's a skin "graft".  
    
    --bonnie

    Dottie,
    
    If the skin is "raised", it means that there is significant scarring
    occuring, which is not only disfiguring, but also can become
    mechanically a problem with being able to use the joints and muscles
    under the skin.  Skin grafts are used to sort of "patch" these spots.  
    
    Also she may wind up with a "job's suit" after the grafting.  this is
    sort of like a high tech leotard to hold the skin and what is under it
    flat to prevent further scarring.  there is a new technique out now
    which some burn units are using where they start stretching skin near
    the burned areas to pull over the burn instead of patching it in.  Some
    hospitals have has far better luck using this methor than with
    conventional skin grafts.  
    
    Meg, who learned more about burn care several years ago, then she ever
    wanted to, don't ask.

    Don't think I mentioned this before...
    
    The Shriner's have done research (in conjunction with Mass General
    Hospital) to develop a kind of "synthetic skin".  From what I've been
    told it is somewhat of a success.  
    
    ....not for the squeemish, I have also been told the use of cadaver
    skin is a fairly successful option as well.  I guess if it works, does
    it really matter where it comes from?
    
    Lyn

Thanks for the explanation, Meg!

I was disappointed to hear about the upcoming surgery for two reasons:
putting Lauren through more trauma, but also remembering someone say 
(I think it was a comment from Jim's cousin - the future cosmetic surgeon)
that more can be done to cosmetically repair scarring when working from
damaged skin that from grafted (thanks for the spelling correction, Bonnie)
skin.  So I hope the grafting doesn't hinder future cosmetic surgeries.

Sigh.

Dottie

    Dottie,
    
    I think what they may wind up doing is using the grafts at this point
    in time to hold things together temporarily.  Then at a later date,
    working on the skin expansion techniques and removal of the grafted
    skin is an option.  
    
    I know that you and your family have years of treatment to "look
    forward" to.  Serious burns can require treatment over many many years. 
    In some cases, it can be 5 years before all the damage can be known.  
    
    Meg