Find out how a rare breathing disorder has changed the life of my young son and my family.

Sunday, February 04, 2007

Sunday, February 04, 2007

Great News! Great News!
Current mood: jubilant

At church today, Josh told me he wanted to be baptized.
I told him he needed to go tell the preacher about it.
So after church, he walked over to the preacher
and waited patiently as others greeted
the preacher and left.. waiting for his turn
to talk alone with him. When finally it came time,
Josh did tell the preacher of his wish to be baptized.
The preacher asked him
if he had placed his faith in Jesus as his saviour
and Joshua told him "yes" he had done that.
So the preacher told us he would come visit us this week.
He also asked Josh when he wanted to be baptized -
they could do it next week. And Josh said yeah, next week.

Then we returned home to learn that my father-in-law,
at his church today (our hometown church in Odessa)
had also made a decision. He walked the aisle today
and made his profession of faith known
as well his desire to follow the Lord in baptism!

What's more is that neither grandfather nor grandson
had any idea they were both making those decisions
at precisely the same time in two different cities
and churches.... WOW!!

GOD is good.. all the time!!!


Wednesday, January 31, 2007

Medicaid Update

Current mood: distressed
Category: Life

Well, I've just learned a bit more about how
this Medicaid Waiver thing works.....
Apparently, Josh does NOT get a
Medicaid number nor a card
until 30 days past the date
he was admitted (overnight)
into the nursing home.
I have no idea why that is - but apparently
even the case worker at
the Department of Aging and Disability
handling our case did not know that until today.
So, all the mounting bills are still piled on top of us
and still no help from Medicaid as of yet -
-not with the growth hormone shots
(our co-pay is $150 every month for those),
- not for the hospital bills

(our part of the bill from Rush Hospital
is well over $5,000),

- not for the many, many bills
from when Josh has to have bloodwork
(like today - each one costs us about $50).

And we have set aside money in a flexible spending account
so that what we DO pay in medical costs will be tax-free.
But that means the money comes out of the paycheck
and there is less for us to budget for things
like groceries, gas, mortgage, utilities, etc.
So, anyway you slice it - we are BROKE!!!
It feels awful to be broke.

Please GOD, help us to get out
from under all this debt -

Please everyone, keep us in your prayers -
and pray that Josh's bloodwork that he is about
to have done shortly (this afternoon)
will have good results.


1:18 PM -


Friday, January 26, 2007

This one's about my daughter, Steffany

Category: Life

I just had to share these funny pictures with you.
They are of Steff - my 15 year old step-daughter.
She and my sister, Amanda decided it would be spa night

complete with chocolate facials!
Steff went first and here is the result:

I did NOT join the girls in this one

but they assure me it made
their skin feel much smoother
I'll take their word for it

Josh Update on my Birthday

Current mood: thankful
Category: Life

I am having a very nice birthday so far.
Thanks to all of you who have sent me greetings.
How very nice to hear from you all!!!

Josh is doing quite well these past few days and now.
His Oxygen saturation levels and CO2 levels have been doing good.
We have even let him take brief periods off his ventilator
during the day without his levels getting too bad.
We don't let him stay off too long, just in case.

Today, I took Josh to his school so he could participate
in his class pictures. He was so excited to get to see everybody
and get to be in the picture with his class!
We worked on his hair this morning and got it all spiked
just the way he likes it! For the picture, we tried to get his cart
with his ventilator just outside the picture.
Of course, he was still hooked to it with the hoses to the vent -
but hopefully they won't be too noticeable.

How things are coming on the Discovery Channel
piece on Josh?? It seems to be coming together nicely.
I have had several emails back and forth
and talks on the phone with the folks from the
production company in London.
And yesterday, we FedEx'ed them a package
of medical records and a disc with pictures on it
to help with the project. The latest word
is that they will be casting actors next week
for dramatizations and they plan to
come to the states the week of Valentine's Day
to film interviews with us and some doctors.
I'll keep you posted as I hear more so stay tuned!!

Pray for "Air Force" Josh

I do want to ask you all to pray for a neighbor of ours -
another Josh. He is near my age and in the Air Force.
He had a brain tumor removed last year.
This "Air Force" Josh (as we call him) had been doing
much better with chemo and radiation.
We just heard yesterday that he had another
seizure (his first seizure is how he learned
of the tumor to begin with all those months ago).
He reported he also broke his toe in three places
(I believe during this seizure). I do not know how
he is doing now (he didn't answer when
we went to check on him yesterday and
it did not appear he was home when we passed by
about an hour ago on our way home.
We are worried about him but know
with God all things are possible.

I'll leave you all today with this picture I just took
of my Josh with his hair all spiked for picture day!

And check out how much Josh has changed
since these other pictures (below)
we just came across from the SUMMER of 2004 -
a few months before he first got so sick.

Thanks again everybody for
helping to make my birthday
such a nice one!!!!!!


Monday, January 22, 2007

Current mood: hungry

One of the things the doctor recommended for Joshua
was for him to see a dietician. We plan to do that once he has
his Medicaid card in hand. Until then, his nurse shared
with us a diet given to her by a cardiologist. It's supposed to be
a sure fire way to lose weight fairly quickly – to help patients
who need to lose weight before heart surgery. My sister, Josh and I
decided to give it a try – at least on a short-term basis
and see how it goes.

Here's the diet:

It looks pretty simple and didn't sound too bad.
So, we've been trying it out.
But, we have also found ourselves
watching more Food Network on TV. Seeing all that
yummy food has us wanting to stray from our diets.

Josh keeps asking is that on our diet? Is that?
How about that? The answer 9 times out of 10
(or so it seems) is NO. So we've decided
on many things we want to indulge in
once our diet time is over. And my sister
has already decided that Tuesday, once we should
have lost 5 pounds, we will go off the diet for the day
and have fudge brownie sundaes. So, we'll probably
have to diet for 2 weeks to lose the weight we put on
in one day! Oh, and we have to "fudge" again
on our diets on Friday because it will be
my birthday! Oh well.


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