Good Evening Everyone. I hope everyone is doing well, and is happy and
healthy.
I have a prayer request. Some of you may remember me writing about
Valerie's friend, Charlie Walker. He is the same age as Valerie, 13, and has
CF, too.
He had surgery to get his feeding tube about 6 months ago and has done
great, gaining weight very well. I believe Vicky told me Charlie weighs 74
pounds
now.
I talked to Charlie and his Mom, Vicky, earlier today. She sounded a little
worried about Charlie. Then I talked to Charlie for a long time. We
discussed lots of things, but we mostly talked about his lack of exercise.
Charlie went into the hospital last Monday and will probably be there at
least another week, if not longer. Valerie goes in on August 11th and we are
thinking Charlie may still be there then.
Charlie told me he gets out of the bed maybe 30 minutes a day. This is to
go to Physical Therapy. He said he also may go down to the cafeteria, if he
feels like it.
Last time Charlie was in the hospital, the doctors finally started talking
about lung transplant. They told Vicky they needed to start planning and
thinking about where he would go. They do transplants at UAB Adult Hospital
but
I don't think they do them on children as young as Charlie. Plus, there have
been several "issues" with the CF Center there. It is fairly new, maybe a
few years new, and things are not running as smooth as they could be, from
what I understand from other patients there. They are working hard to get
things going, and will have a wonderful CF Center one day. But, for now,
Charlie
needs a transplant, according to the doctors, and it was suggested they think
about either Pittsburg or St. Louis. Vicky does not like to talk about it
much so I don't know anything other than that the doctors told them to start
thinking about it. She had told me they were going to set up an appointment
but I don't know if that has been done or not. I did tell her I would go with
them, though, if she needed me to.
I am very concerned about Charlie and his lack of energy. Even though he
has gained 15 pounds since getting the feeding tube, he is still underweight
and does not have much energy. His PFT's this past Friday were 41. When he
was there 2 weeks ago they were 49.
Charlie loves video games and plays them all the time. He wanted to ask me
to get him a new game, but his mom wouldn't let him. This is because she
knows I will get him anything he wants. I would give this kid the world, if it
was in my power to do so. However, after talking to Vicky and thinking about
it some more, I wonder if he is able to stay in the bed so much because he
has the video games to keep him occupied. Based on that thought, I don't know
whether to buy the game or not. So, I made a deal with Charlie.
When Valerie goes in the hospital August 11th, if Charlie is still there, we
are going to have a race. I am old and he is sick and lazy - those are his
words. If he beats me, I buy the game. If he beats me, he buys me supper at
my favorite restaurant in Birmingham, The Purple Onion or Al's, which is
just like The Purple Onion, only better! Now, I don't know if I can outrun him
or not, but I told him he needed to start "training". He is supposed to tell
his Physical Therapist about the upcoming race so she can help get him in
shape. He sounded excited about it, but very doubtful that he can beat me. I
think he will, and I won't have to let him win on purpose. :)
Does anyone have any ideas of things he can do that are fun for a 13 year
old boy that don't require a lot of energy? I am putting together a "happy
box" to send him Monday and wanted to put things in there that will need to be
done out of the bed. I am sending a little bowling game, the kind for little
ones. I don't know what else to send but will look at the stores tomorrow to
see what I can come up with. Just thought I'd see if anyone knew of
anything off the top of their heads that might help. If anyone has any ideas,
please email me.
Also, if you don't mind, if you pray, please say a prayer for both Charlie
and his Mom, Vicky. In the past, several people have asked for his address so
they can send him a card. I am going to post that, too, just in case you
want to say hi. Remember, he is a 13 year old boy.

Charlie Walker, patient
Room 592
UAB Children's Hospital
1600 7th Avenue South
Birmingham, AL 35233

Thanks guys, for everything! I appreciate everything everyone does for us
and in this case, Charlie and his Mom. They are just going through a rough
patch and need a boost. He is the sweetest little guy you would ever meet. I
have said before, he looks like Dennis the Menace with the wire glasses and
blond hair. Those big eyes he has get me every time! I love this kid as if
he were my own. It just makes me angry that he is so sick. It is just not
fair.

LOVE AND HUGS,
Sue Pettit -_ www.curecf4valerie.com_ (http://www.curecf4valerie.com)
_ spettit@..._ (mailto:spettit@...)
_ semp915@..._ (mailto:semp915@...)

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