Nichole,

Thank you so much for thinking of this great idea.  We appreciate your
input so much!

T.

--- In npventsupport@yahoogroups.com, Nichole Blase <carlyqkitty@...>
wrote:
>
> I have put together a basic table in the data base area for us to
put our name, age, and diagnosis, or other info you might want to
share.  I can add or subtract from the table if you want me to add
additional options.
>
> Nichole B.
>
>
>
> ---------------------------------
> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.
Try it now.
>

The majority of children here in the Phoenix area in Arizona that
are on vents remain at home. Most of the time if the parents can't
take care of them; they are placed in medical foster or group homes.

There is a great Vent Dependant agency here that takes care of the
kids and adults on ventilators. They help pay for the nursing
(picking up whatever the primary insurance won't), help pay for
supplies, the vent nurse from the program sees each kid every month
or every other month (depending on how stable the patient is),
sometimes up to every week if there are a lot of problems. I have
been on the vent program since I was 12 and they have really just
been wonderful. When my primary insurance years ago wouldn't pay for
a capnometer, they paid for one instead. When we run into problems
with the vent and needing new equipment or switching equipment, my
vent nurse always comes out and helps us with whatever it is.

When I was born the doctors wanted my mom to sign me over to the
state so they could put me in an institution (This was in 1980). It
angered my mom so much that she gathered a group of parents, who
then fought to shut down all of the institutions for the "medically
fragile" children. One remained open, and around 6 years ago was
redone and renamed Los Ninos. (http://www.losninoshospital.com)

  Los Ninos remains open to take care of the kids who parents can't,
and the state can't find a foster home for. I think they have
something like 30 kids between two different facilities at Los
Ninos. All of the rest of the kids (several hundred) on vents and
everything are in their own home, a foster home or a group home.
Every option to keep these kids in the community is exhausted before
they are placed at Los Ninos.

It took a lot of work for my mom and the other parents to get it
this way, but I think the kids are a lot better off than simply
being placed in institutions. It IS possible, but you have to have a
large group of parents willing to advocate and work extremely hard
to change the system. It took my mom and the other parents years of
lobbying, writing bills, pushing them through the State house and
the senate, getting them approved, getting them put into action,
etc. And just when that finally happened, they then had to start
fighting to overhaul the entire system of home care to re-do it –
which took many more years of the same thing. I have a lot of
memories as a kid of going to rallies, protests, speeches, etc that
the parents had helped organize. It really took my mom a lot of time
and effort – dad too. Dad really was the one that stayed home and
took care of me and our medical-foster kids while mom went to
meetings. That was the only way mom was able to go, they couldn't
both go because there wasn't that much home-support yet.

There is a lot of support here for parents of kids on vents or with
other medical issues, and quite a bit of nursing is available. We do
have a nursing shortage like everywhere else, but the majority of
kids and adults on vents get quite a bit of nursing. I personally
right now get 8 hours a week of daytime nursing (So little just
because we are having a bit of a hard time finding a day nurse right
now that "fits" here.) and 24 hours a week of overnight nursing care
(Three eight hour shifts). I qualify for up to 18 hour a day care
when well and 24 hour a day nursing care when sick but mom rarely
uses that much. We do have some day nurses we could use, but they
just aren't a good fit right now. My nursing case manager is
currently trying to find more day nurses for us.

Nikki


--- In npventsupport@yahoogroups.com, neaaskmi@... wrote:
>
> Lori: Can I ask what state you are in?  We have a child on a vent
as well and
> I empathize totally with your issues.  I totally feel that
the "rehab"
> institutions that they put these children in are businesses for
the main purpose of
> making money.  I totally understand that some parents just cannot
care for
> these high tech kids, but...nursing homes should not be the first
option when
> parents cannot care for them.  I am in Michigan and when parents
cannot care for
> the children they are placed in foster homes.
>
> Just curious what state as we adopted our son from an institution
in
> California where there are alot of children in    "rehab".  Just
as an aside, we are
> adopting a "medically fragile" child from an institution in
California, he is
> delayed but medically he only has a gt.  Not a big deal to care
for him.  The
> institution wanted him to remain there and tried to get the court
to make this
> child a long term placement with them.  Grrrr.
> Sorry, institutions and children are a sore spot with me and like
you said,
> the system almost makes it impossible for parents to care for
their children at
> home.  I wish we could unite and advocate for our kids, but...as
you said
> there are often so few at home that no one listens.  Unfortunately
as we are from
> so many differing states it is hard to make changes.  Any ideas
out there?
> Maybe we could all pack up our kids and meet in Washington to talk
with our
> senators/reps?  But...most of us cannot get away.  I would love to
hear any ideas
> that we on this list may have on how to advocate for improved home
services,
> for kids and adults.
> Sorry for rambling, just irritates the heck out of me that
families like you
> and others have to go through this.  I have lost so much respect
for the
> nursing profession because of the poor quality nursing we have
received and I am a
> nurse.
> Nora
>
>

It would be nice to know what states people are in, maybe they could then advocate together.  Even 3-5 people are heard more than one voice.

Thanks,
Nora


**************
Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

I am computer illiterate, so a question.  Is there a place on our yahoo group site that we can write who we are, dg and what state/area so that only we can see it?  I will never remember who everyone is, old age I guess.  For our safety it may have to be fairly general info, Just thinking out loud.
Nora


**************
Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

----- Original Message -----

From: Sharon Agli

To: npventsupport@yahoogroups.com

Sent: Friday, January 18, 2008 8:21 PM

Subject: RE: [npventsupport] Community Choice Act Hearing - Who Showed Up, What Went Down

     Thanks for sending this out, Mark.  With being so entirely busy with Hunter's daily care, I don't have the time I would like to discover these very important updates myself.  A huge issue for us has been the total denial of assistance for independent transportation (wheelchair accessible van) for our family.  Both our Insurance and the State of CT refuses to assist us in any way financially with this majorly costly item, with the excuse that Hunter is not school age yet.  Can you imagine?  Actually, I bet you can.  Hunter is only transported out of our home for Drs/Therapy apnts on an ambulance stretcher, which is terrible.  Thanks for the info provided here.
    ~Sharon

---

To: npventsupport@yahoogroups.com
From: nodakwheeler@yahoo.com
Date: Fri, 18 Jan 2008 12:16:28 -0800
Subject: [npventsupport] Community Choice Act Hearing - Who Showed Up, What Went Down

Community Choice Act Hearing - Who Showed Up, What Went Down
Source:  Justice for All

The House Energy & Commerce Subcommittee on Health's "Helping Families with Needed Care: Medicaid's Critical Role for Americans with Disabilities" hearing was well-attended by both Members of Congress as well as advocates, many of whom traveled from Pennsylvania, Maryland, Virginia, New York, and even Texas to attend the hearing.

Members Who Attended:
Energy & Commerce Chairman Dingell (MI)
Subcommittee Chairman Pallone (NJ)
Subcommittee Vice-Chair Green (TX)
Subcommittee Ranking Member Deal (GA)
Rep. Murphy (PA)
Rep. Wilson (NM)
Rep. Buyer (IN)
Rep. Capps (CA)
Rep. Eschoo (CA)
Rep. Solis (CA)
Rep. Burgess (TX)
Rep. Baldwin (WI)
Rep. Schakowsky (IL)
Rep. Hooley (OR)

Highlights:

MEMBERS - Many of the Members, in their opening remarks, commented on their concerns regarding recent Medicaid regulations and critical services cuts on transportation and administrative reimbursements for services provided for students with disabilities. Rep. Capps (CA), a former school nurse, and Rep. Hooley (OR), a former teacher, offered particular dismay of the recent Medicaid regulations and their effect on children with disabilities staying integrated in public education.

WITNESSES -
Diane Rowland of Kaiser Commission on Medicaid and the Uninsured: "Institutionalization should not be the admission ticket to home-based services under Medicaid."

Stephanie Thomas of ADAPT: "Many of ADAPT's members have done time in nursing homes and other institutions, basically becoming the cash crop for an industry that wants to draw down dollars."

...Read the entire recap of the hearing, including more highlights, pictures, testimony of the witnesses, and links to the archived webcast.

...Read a press release from Chairman Dingell of the House Committee on Energy & Commerce.

...Read an associated article, "Groups Back Expansion of Care in Homes, Community, But Question Transition Rules."

---

Never miss a thing. Make Yahoo your homepage.

----- Original Message -----

From: Scott F. Sands

To: DMD Support ; DMD Pioneers ; NP Vent Support

Sent: Saturday, January 19, 2008 8:42 PM

Subject: [npventsupport] A new Roll Call if you don't mind...

Hi All,

I know that this Roll Call has been done before, but if you don't mind
I would like to take it again. Please let me know who is out there
with DMD (boys, teens, adults), your age and location.

Here, I'll start... I am 41 with DMD, and I'm in Orlando, FL.

Thanks,

Scott

----- Original Message -----

From: Tim

To: npventsupport@yahoogroups.com

Sent: Sunday, January 20, 2008 2:02 PM

Subject: [npventsupport] ROLL CALL

ROLL CALL

My name is Timothy A Carey. People call me TC or TAC or just Tim.
I live in Wisconsin near Green Bay.
I have duchenne muscular dystrophy and on a ventilator with trach.
http://www.mdausa.org/disease/dmd.html
I am on a LP6 vent at night and on a LTV-800 all day long.
The External Battery lasts from 17 -19 HRS. I usually only use it 14-
15 hours a day.

I am going to be creating a web site called DisabilityVoiceSpace.us.
I am looking for people with disabilities who want to write articles
for people with disabilities on any topic. If you just want to write
one article that will be fine, but I do need people who want to write
articles on a continual basis. I also need people who want to help
with this new website in any way. With web design, content and
features, and overall website.
If you want to get in on the ground for all of this website this is
your chance. And maybe some of you have the talent relating to
something I haven't mentioned that could help out.
People without disabilities are also welcome.
I created a yahoo group called DisabilityVoiceSpace for the purpose
getting everyone who is interested in this website
DisabilityVoiceSpace.us together.
I will know if I get a grant to create this website and provide
publicity for it on January 25, 2008. But this site will go up
regardless just it would be much better and more publicized with this
grant.
The articles section and other sections will be for the whole us.
A very small part of the site will be for people with disabilities in
Wisconsin, but at the end of a year these specialized sections will
be expanded for other states. Hopefully this site will unite all
people's with disabilities and increase the voice of people with
disabilities socially, politically, and for public change over the
whole country. Also educating people with disabilities, people
without disabilities, and Legislators.

TAC

----- Original Message -----

From: Andrew VanBelkum

To: npventsupport@yahoogroups.com

Sent: Friday, January 18, 2008 3:02 PM

Subject: [npventsupport] Re: Humidifier

I'm glad to hear that you are so adaptable with all these stupid
rules you have to abide by. But, if you feel any of their rules
could possibly harm to your daughter, don't hesitate to raise a
stink about it. Sometimes we just need to have that pitbull type
tenacity within the medical community. Afterall, the squeaky wheel
gets the grease. GOD Bless!

In HIM Forever,
Andrew

--- In npventsupport@yahoogroups.com, Lori R <loriladybug76@...>
wrote:

Well, we have been very unhappy with our doctor and lack of him
wanting to take Emma off the vent. I talked to the hospital and to
the health care authority and was told he was the ONLY doctor we
could use in the entire state, as he was the pulmo that implemented
and ran the home ventilator program. His strict guidelines are the
ones the program follows. Like in our case, either dad or I have to
be with Emma at all times. No leaving her with family, a sitter, or
nurses. The only exception to that rule is when she is in the
hospital or has to go to school. And the supply list is also
dictated by him/program. The amount of nursing care is also, but the
rules can change I guess because I begged him to drop from 7 to 6
and then 6 to 3 nights of nursing and got my way.

I just really try not to deal with him if I do not have to. We got
to him for quick visits every few months and that is it. I have
learned to deal with the supplies and rules and have adapted so that
life is happier and more stress free.

~~Lori~~
Mom to Derek age 6, Emma and Ella (mono-mono twins) age 3
Emma spastic quad CP, trach, vent dependent, love of my life.

Mj and Brenda...
You both are in my thoughts.  Please get well soon.


annette

Sharon Agli wrote:
>
> Dear MJ and Brenda,
>               Adam, Hunter and I certainly hope you feel better soon!
> Saying a prayer for a quick recovery!  Sending our love your way!
>            ~Sharon, Hunter's Mommy from CT
>
>     ------------------------------------------------------------------------
>     To: Welcome_to_Switzerland@yahoogroups.com;
>     npventsupport@yahoogroups.com
>     From: TWEETYROLL88@...
>     Date: Mon, 28 Jan 2008 23:59:06 -0500
>     Subject: [npventsupport] Quick MJ update
>
>
>     MJ is resting comfortably.  Just finishing another neb and then I
>     will try to get some rest.  It's been a long day with coughing and
>     CPT every 15 to 20 inutes.  MJ is in Room 271 in PICU in
>     Children's.  I will update more in the morning, but when she
>     sleeps I'm going to sleep too.
>
>     MJ Purk
>     SMA type I+, 19 years old
>     “It is not the critic who counts: not the man who points out how
>     the strong man stumbles or where the doer of deeds could have done
>     better. The credit belongs to the man who is actually in the
>     arena, whose face is marred by dust and sweat and blood, who
>     strives valiantly, who errs and comes up short again and again,
>     because there is no effort without error or shortcoming, but who
>     knows the great enthusiasms, the great devotions, who spends
>     himself for a worthy cause; who, at the best, knows, in the end,
>     the triumph of high achievement, and who, at the worst, if he
>     fails, at least he fails while daring greatly, so that his place
>     shall never be with those cold and timid souls who knew neither
>     victory nor defeat.” ~ TR
>
>     Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels
>     websites, and Personalized Merchandise!
>
>     www.our-sma-angels.com/b4sma - B4SMA, My organization
>     www.our-sma-angels.com/Margaret - My website
>     www.cafepress.com/b4sma - My Shop
>     ------------------------------------------------------------------------
>     More new features than ever. Check out the new AOL Mail
>    
<http://o.aolcdn.com/cdn.webmail.aol.com/mailtour/aol/en-us/text.htm?ncid=aolcmp\
00050000000003>!
>
>

Hi everyone,

Today I was sorting through and deleting a bunch of older e-mail
messages in the folder I have for this group and happened to notice that
we haven't heard from Bryna Golden in a really long time, must be quite
a few months now.

Bryna if you are still reading messages here please give a shout out and
let us know how you are doing okay?

-Alan

npventsupport member

I think it is a vent problem.  The LTV has been recalled twice for a
similar problem -one time the machine just shut off.  I am not a fan
of the LTV.  Another possibility is that the vent isn't breathing
past the resistance.  This was one of my major complaints with the
LTV.  I have severe contractures and tightness all across my chest
wall  and thick  secretions.   At the first point of resistance, the
vent stopped delivering the volume and wouldn't push air past the
the secretions.  My resistance increases when I sleep-I have back
pressure in the 80s.  So perhaps the vent isn't  breathing through
the resistance.  Or, once again a manual flaw has been found...I
use  the Newport HT50...I hope you can figure out the problem and
fix it-the episodes sound very scary!

--- In npventsupport@yahoogroups.com, Mark Boatman
<nodakwheeler@...> wrote:
>
> The vent not alarming is an immediate concern that should be
addressed right away.  Wondering if it could be some kind of
obstruction of the airway that a bronchoscope could see.
>
> Has Devin been on the same vent settings for a long time?  Maybe
thy need adjusting but only a guess.  Hope you get an answer soon.
>
> Mark
>
>
>
>
> ----- Original Message ----
> From: Crystal A <devsmama02@...>
> To: npventsupport@yahoogroups.com
> Sent: Sunday, January 27, 2008 8:45:30 PM
> Subject: [npventsupport] Can anyone tell me what this could be?....
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> My son is 5 years old and has SMA type 1. He is 24/7 vent
dependent. His vent is an LTV 950 with a peep set at 6. his trach is
a custom bivona 4.5 mm i.d 6.7mm o.d with a cuff. OK, here is the
question. Devin has started doing something very new and very scary
lately it has happened probably 4-5 times now. The vent will just
stop breathing him, it doesn't even alarm. Usually we will just
notice that his chest is not moving. Me and his nurse immediately
start working on him..either one of us, who ever is closest will
grab the bag and start bagging him while the other checks the vent
and everything.. Most times the bag doesn't even help him right
away. We suction and nothing comes out, but usually suctioning is
what gets him going again.. We have no idea what could be going
on.... If anyone has ever experienced something like this please
help... I don't know what it could be.. Vent, trach,
>  peep, or just maybe his airway being "floppy".  I hope this makes
some sense I am a little rattled still cause he just had one of
these strange episodes on us...
>  Any help is greatly appreciated :)
>
> Thanks,
>
> ~Crystal,
>
> Mommy to Devin 5 1/2 years old - SMA Type 1. Trached 02/03, Vent
dependent since 01/03.
>
>
>
>
>
>
>
>
>
>       Be a better friend, newshound, and
> know-it-all with Yahoo! Mobile.  Try it now.
>
>
>
>
>
>
>
>
>
> <!--
>
> #ygrp-mkp{
> border:1px solid #d8d8d8;font-family:Arial;margin:14px
0px;padding:0px 14px;}
> #ygrp-mkp hr{
> border:1px solid #d8d8d8;}
> #ygrp-mkp #hd{
> color:#628c2a;font-size:85%;font-weight:bold;line-
height:122%;margin:10px 0px;}
> #ygrp-mkp #ads{
> margin-bottom:10px;}
> #ygrp-mkp .ad{
> padding:0 0;}
> #ygrp-mkp .ad a{
> color:#0000ff;text-decoration:none;}
> -->
>
>
>
> <!--
>
> #ygrp-sponsor #ygrp-lc{
> font-family:Arial;}
> #ygrp-sponsor #ygrp-lc #hd{
> margin:10px 0px;font-weight:bold;font-size:78%;line-height:122%;}
> #ygrp-sponsor #ygrp-lc .ad{
> margin-bottom:10px;padding:0 0;}
> -->
>
>
>
> <!--
>
> #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean,
sans-serif;}
> #ygrp-mlmsg table {font-size:inherit;font:100%;}
> #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica,
clean, sans-serif;}
> #ygrp-mlmsg pre, code {font:115% monospace;}
> #ygrp-mlmsg * {line-height:1.22em;}
> #ygrp-text{
> font-family:Georgia;
> }
> #ygrp-text p{
> margin:0 0 1em 0;}
> #ygrp-tpmsgs{
> font-family:Arial;
> clear:both;}
> #ygrp-vitnav{
> padding-top:10px;font-family:Verdana;font-size:77%;margin:0;}
> #ygrp-vitnav a{
> padding:0 1px;}
> #ygrp-actbar{
> clear:both;margin:25px 0;white-space:nowrap;color:#666;text-
align:right;}
> #ygrp-actbar .left{
> float:left;white-space:nowrap;}
> .bld{font-weight:bold;}
> #ygrp-grft{
> font-family:Verdana;font-size:77%;padding:15px 0;}
> #ygrp-ft{
> font-family:verdana;font-size:77%;border-top:1px solid #666;
> padding:5px 0;
> }
> #ygrp-mlmsg #logo{
> padding-bottom:10px;}
>
> #ygrp-vital{
> background-color:#e0ecee;margin-bottom:20px;padding:2px 0 8px 8px;}
> #ygrp-vital #vithd{
> font-size:77%;font-family:Verdana;font-weight:bold;color:#333;text-
transform:uppercase;}
> #ygrp-vital ul{
> padding:0;margin:2px 0;}
> #ygrp-vital ul li{
> list-style-type:none;clear:both;border:1px solid #e0ecee;
> }
> #ygrp-vital ul li .ct{
> font-weight:bold;color:#ff7900;float:right;width:2em;text-
align:right;padding-right:.5em;}
> #ygrp-vital ul li .cat{
> font-weight:bold;}
> #ygrp-vital a{
> text-decoration:none;}
>
> #ygrp-vital a:hover{
> text-decoration:underline;}
>
> #ygrp-sponsor #hd{
> color:#999;font-size:77%;}
> #ygrp-sponsor #ov{
> padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;}
> #ygrp-sponsor #ov ul{
> padding:0 0 0 8px;margin:0;}
> #ygrp-sponsor #ov li{
> list-style-type:square;padding:6px 0;font-size:77%;}
> #ygrp-sponsor #ov li a{
> text-decoration:none;font-size:130%;}
> #ygrp-sponsor #nc{
> background-color:#eee;margin-bottom:20px;padding:0 8px;}
> #ygrp-sponsor .ad{
> padding:8px 0;}
> #ygrp-sponsor .ad #hd1{
> font-family:Arial;font-weight:bold;color:#628c2a;font-
size:100%;line-height:122%;}
> #ygrp-sponsor .ad a{
> text-decoration:none;}
> #ygrp-sponsor .ad a:hover{
> text-decoration:underline;}
> #ygrp-sponsor .ad p{
> margin:0;}
> o{font-size:0;}
> .MsoNormal{
> margin:0 0 0 0;}
> #ygrp-text tt{
> font-size:120%;}
> blockquote{margin:0 0 0 4px;}
> .replbq{margin:4;}
> -->
>
>
>
>
>
>
>
>
>
_____________________________________________________________________
_______________
> Be a better friend, newshound, and
> know-it-all with Yahoo! Mobile.  Try it now.
http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
>

---

To: npventsupport@yahoogroups.com
From: devsmama02@...
Date: Mon, 28 Jan 2008 14:57:22 -0800
Subject: Re: [npventsupport] Can anyone tell me what this could be?....

I don't think so. It is a customized bivona flextend with and i.d of 4.5mm and an o.d of 6.7 mm length is 42mm with a inflatable cuff. He is only cuffed from time to time during the day and while he is sleeping and not all the way just a little to accommodate a leak that he has that causes his volume to be low.
 

~Crystal,
Mommy to Devin 5 1/2 years old - SMA Type 1. Trached 02/03, Vent dependent since 01/03.
 
 

----- Original Message ----
From: Michael Keen <mkeen@ntelos.net>
To: npventsupport@yahoogroups.com
Sent: Monday, January 28, 2008 4:23:06 PM
Subject: Re: [npventsupport] Can anyone tell me what this could be?....

Does his trach have an inner cannula?

Pastor Mike
Communications Pastor
Good Shepherd Church of the Nazarene
Stuarts Draft Virginia,

 

Pastor,
Spirit Roller Ministries
Waynesboro, VA
www.spiritrollermin istries.org

---

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

---

To: Welcome_to_Switzerland@yahoogroups.com; npventsupport@yahoogroups.com
From: TWEETYROLL88@...
Date: Mon, 28 Jan 2008 23:59:06 -0500
Subject: [npventsupport] Quick MJ update

MJ is resting comfortably.  Just finishing another neb and then I will try to get some rest.  It's been a long day with coughing and CPT every 15 to 20 inutes.  MJ is in Room 271 in PICU in Children's.  I will update more in the morning, but when she sleeps I'm going to sleep too.  

MJ Purk
SMA type I+, 19 years old
“It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat.” ~ TR

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and Personalized Merchandise!

www.our-sma-angels.com/b4sma - B4SMA, My organization
www.our-sma-angels.com/Margaret - My website
www.cafepress.com/b4sma - My Shop

---

More new features than ever. Check out the new AOL Mail!

----- Original Message -----

From: MJ Purk

To: Welcome_to_Switzerland@yahoogroups.com;npventsupport@yahoogroups.com

Sent: 1/28/2008 10:59:17 PM

Subject: [npventsupport] Quick MJ update

MJ is resting comfortably..  Just finishing another neb and then I will try to get some rest.  It's been a long day with coughing and CPT every 15 to 20 inutes.  MJ is in Room 271 in PICU in Children's.  I will update more in the morning, but when she sleeps I'm going to sleep too.  

MJ Purk
SMA type I+, 19 years old
“It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat.” ~ TR

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and Personalized Merchandise!

www.our-sma-angels.com/b4sma - B4SMA, My organization
www.our-sma-angels.com/Margaret - My website
www.cafepress.com/b4sma - My Shop

---

More new features than ever. Check out the new AOL Mail!