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


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There are 2 messages in this issue.

Topics in this digest:

1. New to this group
From: "Bethany Minor" <bethmcd70@...>
2. Re: New to this group
From: LadyRook2@...


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Message: 1
Date: Mon, 31 Mar 2003 05:24:34 -0000
From: "Bethany Minor" <bethmcd70@...>
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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Message: 2
Date: Mon, 31 Mar 2003 10:02:47 EST
From: LadyRook2@...
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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