Thursday, November 12, 2009

Special Olympics, Veterans Day Concerts & Fundraising Project

It's been a busy time the last few days... heck the last few weeks!

Josh had two different band concerts to perform in one day (for Veterans Day - a day early) and he's been practicing for weeks for Special Olympics Bowling. That big competition finally came yesterday (Nov 11th - which is actually Veterans Day and there was no school that day so James and I took off work to take him. We wanted to anyway to see him compete).

I've got lots of pictures and videos from those events and will show them off at the end of this post... but first... as promised, it's time to tell you all about my fundraising effort.


As you may recall, I had to quit working full time outside our home when Josh first was diagnosed with ROHHAD and put on a ventilator. His medical needs were so complicated, he really needed me with him full time. We've finally got a good staff of nurses in place to help take care of him. So, I am capable of working again. But I am finding that it is nearly impossible to find a fulltime position anywhere... or a job that pays much.

In fact, all I could find - which I am still truly grateful for - is a job making minimum wage, part time at a nearby daycare facility.

So in my spare time, at the encouragement of one of my son's nurses, I am making stethoscope covers. I plan to give them to anyone who wants one (or more) who can give us a donation. I've made nearly 100 of them so far. Much of the fabric was donated by said nurse. She also loaned me the sewing machine to use.



If you would like a stethoscope cover....

1. message or email me... let me know which fabric you'd like
(I've got all kinds - sports, animals, Christmas patterns, etc)
My email is

2. give me your address, so I know where to send it

3. mail or deposit a donation (any amount appreciated - but please... be generous.. I make these by hand, buy the material, thread, etc. and have to pay for postage to get them to you)

to mail:
PO BOX 598, Cibolo, TX 78108-0598

to make deposit:
Randolph Brooks Federal Credit Union
Account # 558742-5

Below are the videos and pictures from Josh's band concerts and Special Olympics Bowling... He won a silver medal for that!

Monday, November 2, 2009

Halloween and Pacer Update

Josh's latest school picture

You'll notice his trach tube in his neck, but it's capped.
That is because he's not connected to his ventilator.
He is now using his diaphragmatic (breathing) pacemakers
several hours every day.

(see earlier posts to learn what the breathing pacemakers
look like and how they work)

Josh is enjoying being freed from the ventilator more and more!

We periodically check Josh's CO2 level
by placing a connector to his trach (after we remove the cap)
and have him breathe through it a few minutes.
If his CO2 numbers are within normal ranges (30s to mid 40s)
he is good to go. If the numbers are higher,
he must reconnect to the ventilator.
What an End Tidal CO2 monitor looks like:

We also check his blood oxygen level
with a monitor that goes on his finger.
He has mostly stayed in the upper 90's there, so that is great!
What a finger pulsoximeter monitor looks like:

We have noticed that when he does get back on his ventilator
(he's always on it when he sleeps)
that his volumes are getting bigger and bigger.
We think that is because his diaphgram muscles are building
and helping him get bigger breaths. That is great!

We still have to monitor Josh's temperature
and encourage him to drink alot
to keep him from becoming dehydrated
(he is also still taking his DDAVP nosespray
to help him retain some fluids overnight
and early in the morning).

And we continue to give him growth hormone shots
6 nights a week.
He had labs drawn at his last endocrinology visit.
They showed most everything normal.
However, his testosterone level is pretty low.
We are supposed to talk more about the possibility
of having to give Josh monthly testosterone shots
as he nears his 14th birthday...
so almost another year till we worry about those.

I also still give Josh supplements of calcium, magnesium,
zinc, b-complex and Acetyl L Carnitine
(which is suppsed to boost memory -
and it sure has seemed to help Josh).

Halloween Photos

Me - I've got a cold

Josh dressed as a Ninja

See the white cords
from his pacer antennas
under his black shirt?

the white cords go to
his diaphragmatic pacemaker transmitter,
which he carries
in that small black backpack - cool, huh?

We went to our church's annual Fall Festival.

Josh played lots of games,
we did the cake walk,
and we enjoyed some yummy hamburgers, hotdogs, nachos
and home baked desserts (most of which my sister made)

One of Josh's nurses,
Jenny Judy... and her family
went to Fall Fest.
Weren't they cute!

Oh, Here is my sister,
Amanda (the angel)
in my kitchen,
baking up all sorts of goodies

some of what she baked for Fall Fest:
(Mississippi Mud cake and Peaches n cream pie!)

I've been working on a fund raising project... involving stethoscope covers.
I'll show off some of them and give you all the details in a post coming soon!

Discovery Documentary - Life or Death : Battling to Breathe