Hi Lucas and Beth,

Lucas you are so darn rigth!. When Luisa, our 9 year old, was
diagnosed last year, I fell like I was falling through a deep black
hole. We cried for days, to make matters worse our first CF doctor
was so insensitive, this guy told us that we could not afford the
Vest. We were in his office all day, but only had a 20 min chest pt
drill, boy talking about being depress. We had the boys tested but
they were negative.
Almost a year later things are not as foggy, she is doing great, her
treatments are non negotiable but everything else we are open to
negotiate.
One thing that helps me a lot,sort of cheesy, is the fact that so
many times we lose love ones to accidents or freaky things, at least
in our cases we have the power to make their lives so much better and
to savor each moment as if it were the last one, I told you it was
cheesy.
I think we love and cherish our children now more than ever.

Best Wishes,

Anna Palazola mom of Luisa 9 wcf, Venanzio 6 nocf, Pepe 3 nocf
Lucas I am from Venezuela but live in Memphis, TN








--- In cysticfibrosissupport@yahoogroups.com, "Lucas Wall"
<walllucas@h...> wrote:
> Hi Bethany:
>
> I am sad for what you are going on, sadder because of Dylan's
parents
> reaction and lack of commitment to their child. My son was
diagnosed
> when he was 5 m/o, it was also devastating, same story, a lot
of "colds
> and flus".
>
> After a while, we learned that the only people, who can give my son
> strength, confidence, faith, and joy for life, are we, his
parents. If
> he doesn't receive this from us, our work has failed. Since then,
our
> life is normal, yes, as you hear, normal. We take everything
related to
> CF as something normal, this is our life, we brush our teeth every
> morning without thinking about it, and we also give him all pills
and
> stuff like that without questioning "Why us?" "Why him?" All that
> questioning is crap that affects my son's confidence and ability to
> success in life!!!
>
> Help Dylan's mother, but ultimately, help Dylan. He deserves the
best
> in his life, he might be a brilliant person one day, may be the
next big
> hero in US history, may be Senator, may be the doctor who finds the
cure
> for CF. He has the rights to have a normal life. Help him to go
for
> it!!!
>
> Sincerely.
>
> Lucas.
> Father of Santiago 2 y.o. w/ CF.
> From Argentina.
> Actually at Williamsburg, VA.
>
>
> -----Mensaje original-----
> De: cysticfibrosissupport@yahoogroups.com
> [mailto:cysticfibrosissupport@yahoogroups.com]
> Enviado el: Monday, March 31, 2003 6:39 PM
> Para: cysticfibrosissupport@yahoogroups.com
> Asunto: [Cystic Fibrosis Support] Digest Number 91
>
>
> To unsubscribe from this group, send an email to:
> cysticfibrosissupport-unsubscribe@yahoogroups.com
>
>
> --------------------------------------------------------------------
----
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
> 1. New to this group
> From: "Bethany Minor" <bethmcd70@y...>
> 2. Re: New to this group
> From: LadyRook2@a...
>
>
>
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>
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>
> Message: 1
> Date: Mon, 31 Mar 2003 05:24:34 -0000
> From: "Bethany Minor" <bethmcd70@y...>
> Subject: New to this group
>
> Hello,
>
> I have joined this group because I just found out my 9 month old
> nephew "most likely" has CF. He goes for his sweat test in two
> weeks. He was born premature and has had "colds and flus"
basically
> since birth. In February this year he got bronchitus very badly
and
> he always seemed "congested." I even thought it sounded as though
he
> had rails. So finally last week his mother brought him to a
> pulmonologist in Syracuse (we live in NY). The pulmonologist told
> her she was almost positive he had CF. She gave her a bunch of new
> inhalation drugs to give him and gave her an appointment for the
> sweat test.
>
> I am a former EMT and have a large amount of medical knowledge
> because of my own heart/lung problems. As soon as Stacy told me CF
I
> was devistated as she was. The "funny" (ironic?) thing is that
> anytime he was with me I would clap his back because he always
> sounded so terrible. Stacy didn't understand why I did this and
> thought that I was nuts. She now knows about clapping and
> understands why I did what I did.
>
> I've read a lot of the posts in this forum and know that you guys
> will be able to help and support me. Dylan is a special little guy
> and I'm so sad that he has to go through this.
>
> I was wondering also if any of the Mothers out there went through
> depression or anything like that after learning of the dx and if so
> what did you do to get through it. I'm very very worried about
Stacy
> because about 2 weeks ago Stacy's boyfriend (and father of Dylan)
> left her and has only seen Dylan like twice since he left. She is
> extremely depressed, doesn't eat, doesn't sleep and crys all the
> time. I'm afraid that she is not going to be able to care for
> Dylan. Dylan's father is my husband's brother and he hasn't called
> us in weeks. He doesn't even know his son is "this sick", I mean
he
> knew he had bronchitus but that's it and he doesn't seem to care.
> It's a very bad situation. My husband is afraid for Dylan also and
> has considered telling Stacy that if she didn't get some help then
we
> would call Child Protective Services on her. We are foster parents
> and are legally obligated to report abuse or neglect of a child.
> About a month ago Dylan came to stay with us for about 4 days
because
> not only was Dylan sick, but his half sister, half brother, and
Stacy
> were all sick also. His half sister went into the hospital and
Stacy
> asked us to watch him. When my husband went to pick him up Stacy
was
> so weak she couldn't even lift the baby to give him to my husband.
>
> This is just a crazy situation and we're not sure how to deal with
> it. Stacy and Dylan both have doctor appointments tomorrow and I
> asked Stacy to consider going into the hospital while we cared for
> Dylan.
>
> Any advice or suggestions would be appreciated.
>
> -Beth :)
>
>
>
>
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>
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>
> Message: 2
> Date: Mon, 31 Mar 2003 10:02:47 EST
> From: LadyRook2@a...
> Subject: Re: New to this group
>
> I wish I had some good advice for you, It is extremely hard to deal
with
> but
> you have too for your child you need to put your faith in God and he
> will
> help you I promise you it will get a whole lot better my son was
> diagnosed
> when he was 2 weeks old he is now 5 and getting ready to play tee
ball
> and
> every time he goes to the hospital I get scared but I know God is
there
> to
> help him. Please trust in God and he will help you.
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
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