Sunday, December 13, 2009

Dream Hunt

What a Weekend!

Dec 11th-13th: The weekend of Joshua's Dream Hunt trip.

We left Friday morning, December 11th heading through Uvalde and into Del Rio, which is near the border with Mexico. Just northwest of Del Rio, we were directed to look for Allen Ranch Road. That is where the private property is located where we were to go deer hunting for the tv show.

We arrived around 2:30 in the afternoon. We knew we were at the right place when we saw the pickup truck parked out front. It was plastered with camouflage and TNT Outdoor Adventures logos.

I had been worried a bit about our accomodations. Would we be sleeping in a tent or a small shack, or at somebody's house on the couch? I had no idea. My husband even asked me on our way if they'd told me for us to pack sleeping bags or something. "No," I said. But I did make sure we had pillows and blankets just in case.

Little did I know the spot they had arranged for the hunt was the 16,000 acre Texas Antlers Ranch. And we'd be staying at a practically brand new lodge that resembled a log cabin. The place is BEAUTIFUL. Below are some pictures I took:

We took our stuff inside and checked out our room. It was great. We had a nice big bed and Josh had bunkbeds of his own. The windows and bedspreads were white with little deer on them. We also had a large bathroom with 2 showers and double sinks. It was stocked with toiletries and even a hair dryer.

Outside our room was the great room with a living area... which had a rock wall fireplace (kind of like our old house in Odessa had - I sure miss our old fireplace), a big kitchen and dining tables. And we would have our very own chef! She already had snacks available for us if we'd like - homemade chocolate chip cookies, fruit, and chips!

The guys had to hurry and get changed. It was time for Josh to do some practice shots with the gun they had for him to use. Then it was off to the deer blind.
There was only room in the blind for four people. Josh, his guide, the photographer and one other person could go. Josh really wanted me in there with him, but I talked him into letting his dad go - it would really make James' day to see Josh get a deer. And I could always see it later. So, Josh agreed and they set off to hunt, while I stayed back at the lodge.

James and Josh were super excited at the opportunity to go on this guided deer hunt. While they were out, they saw lots of deer and even spotted the one buck they were hoping Josh could shoot. But the deer never gave them a clear shot. So, they came back empty handed the first night. Not to worry, though. They would have a second chance Saturday morning. And for dinner.... big, juicy, thick steaks with all the fixings!

We also spent the evening taking a few more pictures of the lodge:

We awoke Saturday around 4:30AM so the guys would be ready to leave for the blind by 5:45AM. Our chef promised to get up and fix cinamon rolls for us, then a bigger sit-down breakfast for after the hunt.
Again, I hung out at the lodge and visited with the show host, Todd Cast and our chef, Donna Wimberly. I also watched a little TV, and took a nice warm shower.
After a while, as I wondered how things were going out at the blind, the ranch owner, Johnny Allen poked his head in saying they were asking for more feed out near the blind. He asked if the guys in the lodge (Todd Cast and Tommy Wimberly (Donna's husband and a manager at the ranch) if they'd like to ride along. I asked if there was room for me, too. I had not had a chance to see where this blind was and figured it would be nice to get a look. They said "sure" and we headed out.
Even though it was kind of chilly outside, it was nice in the vehicle we were riding in, so I didn't take my jacket. I figured we'd be back shortly. But I was wrong.
After we got into the field approaching the blind, but still a good ways off, we got a message from the guide telling us to stop. That usually means a deer is presenting that could be in position to shoot and we don't want to spook it. A few minutes later, we got the all-clear. So, we proceeded on. That happened a couple of times before we got to the blind. But both times we got the go-ahead to come on.
We turned the corner in front of the blind and I waved to the guys as we passed. We pulled up a ways down the road in front and released corn onto the dirt road along the way. Then, we stopped and the owner hopped out and grabbed a bag of something the guys referred to as "protein" and he ran out in front of the vehicle and poured some out. He put the half-full bag back into the back of the truck and got in, and started it. We drove away slowly and started back for the lodge.

We didn't get too far, when we got another message saying "stop." We were especially surprised because we figured we'd probably scared off any deer in the area and it would take awhile for them to come in to eat after we left. But not long afterwards we got the message that the deer was down! Josh had shot his first deer and it was down!
It was going to be a quite some time now before any of us was going back to the lodge. And in fact, we were all going to be out in the chilly air checking out that deer of Joshua's. Luckily, James lent me his jacket. He had on more layers of clothing than I did, so he was kind of hot anyway.

Well, unlike most hunts, Josh couldn't go over to his kill right away. This one was for a tv show and was being filmed. The photographer had to shoot some things several times from different directions. So, it took awhile.

We were all there when he finally did get to go over and see his deer for the first time. And yes, the camera caught his reaction. For that, you'll have to wait for the show to air (which is supposed to take a few months).

But I did get some still pictures to share:

While we were still out in the field on our way back to the lodge, the ranch owner made some phone calls. By the time we got back near the lodge and barn (where the deer would be taken to be cleaned), quite a crowd had gathered. There was a newspaper reporter, one of the men who lease part of the ranch, other hunters and several people who work the ranch.
Joshua's prize deer was unloaded and setup by the lodge, so that the name of the ranch could be seen in some more pictures. Below are some of those pictures:

Before we finished taking pictures there, the rancher's wife and children showed up with the taxidermist. They had some gifts for Josh and told us they were going to have Joshua's deer mounted for us for FREE! (We later found out that work usually costs several hundred dollars) And they would even have the mounting finished and sent to us by Christmas - which is super fast!
Soon, everyone (but me) was headed for the barn with the deer to clean it and have it officially weighed and scored. And they tell me they even smeared deer blood on Joshua's face to Christen him to the sport. Although that sounds a bit gross to me. Anyway, the blood was wiped off by the time he came back to the lodge for our very late breakfast/brunch meal.
After we ate, we got another surprise. The folks at the ranch had talked with the show crew and decided since we still had so much hunt time left, and they were feeling so generous, they would take Josh's dad - James out and let him try for a deer, too! Not much could have made James more happy that afternoon!
Before the evening hunt, even the Val Verde County Sheriff dropped by to visit Josh and give him a little gift.
Josh decided to come back to the lodge with me and rest while his dad got his shot at hunting. He busied himself watching the deer that come to feed just outside the lodge. He even took a few pictures. But after just a little while, the "limo" (a camo covered suburban) was summoned to come out and pick up the hunter, guide and tv show photographer as James had made his kill!
Everyone in the lodge jumped in for the ride this time. We were so excited to see what size deer James had got. But the sun was dropping fast, so we had to get there in a hurry! And there were so many deer all over the place, I was afraid we were going to run over one (or more) on the way!
Here's what we found when we got out to the deer blind this time:

Sunday morning, we were told we'd made the front page of the Del Rio newspaper! They said there was only one mistake in it. They had written that we are from Uvalde. (not sure why they would have thought that). We stopped at the HEB in Del Rio on our way back home and picked up a few copies of the paper so we could have a look and to share with others. Here's what was on the front page:

And here is the story inside:

Below are some links to websites for more information about the TV show, the ranch where we hunted, the taxidermist preparing Josh's and James' deer and the place where the deer meat is being processed:

The show is Cast of Dreams on TNT Outdoors Explosion.

Here is their website:

Texas Antlers is the ranch with the great lodge where we stayed.

Here is their website:

The taxidermist mounting the deer is Carmen Cantu of RC Taxidermy Wildlife Studio in Del Rio.

Here is her website:

And the meat processing place is Uvalde Meat Market and Processing run by the Jackowski family.

Here is their website:

Wednesday, December 9, 2009

Wind, Dream Hunt and Christmas stuff

Wicked West Texas Winds
Winds of more than 60 miles per hour whipped through parts of West Texas yesterday, Tuesday, December 8th, doing damage to structures and even the community's 50 foot tall Christmas tree at Starbright Village.

I first learned of the winds when my mother, who is learning to text on her cell phone, sent me a message stating her neighbor's barn had blown over the fence into her back yard. The story to air on CBS7 News at 10pm.

She said she called the tv station after she saw it happen and they came to film and interviewed her. (She thought to do that because I used to work at CBS 7 news for a long time).
Here's my mom, Mary Ashley:

Here are pictures of the damage from the station's website:

Here is the written version of the story from the station's website:
Wicked Winds Wreak Havoc on Permian Basin 12/8/09

Beau Berman CBS 7 News
December 8, 2009

Midland, Texas -

Trees and power lines fell victim to fierce winds that took hold of the Permian Basin today, affecting travel on Interstate 20 and tearing down nearly everything in their path.

Whether you were driving the Interstate or cruising through the city, 60 mph winds made their mark on the roadways.

"In December you don't expect it. In March, maybe. But this time of year you don't usually expect that kind of wind", said West Odessan, Terri Bomar.

Drivers on I-20 didn't know what to expect, facing tumbleweeds left and right, evidence of the vicious wind rifling across the highway.
In West Odessa, the wind wreaked havoc on a horse barn.

"I first saw the roof flying up and folding over and in a little while, puff again and another part of it blew over", said neighbor, Mary Ashley.

The wind ripped the three-wall metal structure out of the ground and over the fence as its inhabitants looked on.

"We would have lost seven horses", said the owner, Mrs. Bomar.

She came home to find her barn upside down, a $25,000 financial blow.

"If it would have gone the other way it would have been a tragedy", she said.

In Odessa’s “Starbright Village”, the holidays took a hit.

The metal cords holding up the city’s Christmas tree were no match for the wind today off I-20 where even the Starbright Village Christmas Tree came tumbling down.

"I heard that it was supposed to be pretty bad. I didn't know it was going to do this though", said Ashley.

High-powered gusts took down power lines in Midland, just another sign indicating the ferocity of these winds.

CBS 7's own signal tower found itself in the middle of the windstorm.

For Terri, the wind signaled the downfall of her barn, but she’s not blowing it out of proportion.

"Ohh... I can't tell you how thankful. God's watching over us today. That's for sure", said Bomar.

The heavy wind gusts have blown their way out of the Basin for now but Starbright Village is closed until further notice from the city of Odessa.

Joshua's Dream Hunt coming up
We have BIG plans for this upcoming weekend. Joshua has been asked to be featured on another TV show. He gets to go on a Dream Hunt for a deer in Del Rio, Texas. He has never done anything like this before.
Josh has some mixed feelings about it. He's excited to be going to shoot a gun with his dad. But not sure he will want to get near a dead animal.

His dad is super excited for him, though, and can't wait to see the big buck the scouts have been watching and tracking for us.

I'm just glad Josh has his pacers so he can maneuver into the deer blind easier and still breathe big enough.

If you want to learn more about the non-profit agency responsible for the hunt and the tv show, check out their website:

Right now, it looks like we should have some nice weather for the hunt in Del Rio. Here's the forecast:

Below are some pictures I took last weekend when we went to let Josh practice shooting a friend's gun in preparation for the hunt.

I feel cruddy
I'm starting to feel like I'm coming down with a bad cold or flu (hope not though - especially with the big plans over the weekend coming up). I started feeling pretty achy around my neck yesterday and a little feverish though I haven't seen my temperature go up really. I've had a little congestion. I'm taking lots of vitamins and some medicine and trying to get lots of rest and drink lots of liquids. Hopefully I'll kick this thing soon so I'll be ready to go.
Christmas Gifts
Josh received a box this week from a very special Christmas elf. Inside was a beautiful stocking with his name on it and several small gifts. They are wrapped but the paper is tearing so I told him to leave them in the box for now and I'll tape them up while he's at school and then we can put them under the tree.

I was so glad he received some gifts because we just can't afford to buy Christmas gifts this year. We are having to save every penny we can to pay the taxes on our house.

One of Josh's nurses went with him yesterday and helped him buy gifts to give to us. That was SO SWEET of her. Josh was ear to ear smiles as they told us not to peak and wrapped the gifts.

Christmas Plans
We hope we may have visitors for Christmas since it does not look like we'll be able to go see our family in Odessa like we had hoped this year. My parents will have to make arrangements for my dad to get his dialysis done here and have oxygen available for him. And hopefully we can talk James' mother into coming along, too. Josh really wanted to have Christmas at home, anyway. And Steffany will be too far along in her pregnancy to travel outside of the San Antonio area, so maybe we'll get to spend the day with her, too. James and I will have to work right up to Christmas Eve anyway.

Merry Christmas Video
Below is a video I put together a couple of years ago at Christmas time. I really love the Christmas songs and enjoyed putting pictures to it. I hope you like it, too.

reminder.... I've still got lots of Stethoscope Covers to sell (or give for a donation) if you'd like one, let me know. Drop me a line at

Check them out at my recent blog post :

Thursday, December 3, 2009

Pacer Update and Fun Stuff

Josh Medical Stuff / Pacers & Vent Update

When we saw Joshua's pulmonologist last time, when we started the pacers in October, he told us Joshua could use them as tolerated. He suggested maybe like 15 minutes to an hour long three or four times a day to start. So, those were the orders he wrote (the 15 min-1Hour 3 or 4 x a day). But he failed to write that could increase as tolerated in the orders, so school and home nurses weren't able to let Joshua use them as much as he'd like.

At first, yes, Josh needed more breaks from the pacers because when you get shocked in a nerve causing muscles to contract really big when you've never had that happen before is going to cause you to fatigue quickly. Josh also had to get used to trying to eat, drink and talk around the times the breaths came on suddenly. And we had to watch and get used to increasing and decreasing the number of breaths the pacers gave per minute.

But as Joshua got stronger and more used to the big breaths and his muscle doing more work, he could tolerate the pacers longer and longer. On weekends, when no nurse was on duty, he would put on the pacers about mid-morning and leave them on all day - until a nurse would come at night and he had to get ready for bed. And he did great with them.

So, we were due for another doctor visit December 1st (with the pulmonologist). When we last saw a doctor (endocrinologist Oct 16th) Joshua weighed 86 kilos (about 189 pounds). December 1st, though, he dropped to 83.2 kilos (about 183 pounds). He lost 6 pounds - and that's even over the Thanksgiving holiday when we all ate more than we usually do! And Josh has grown a little and is just over 5 ft 1 inch tall now.

I really think the pacers are worth their weight in gold! Not only is Josh getting a workout by taking this big breaths all day, but he is also able to move about a whole lot more (not being connected to a ventilator all the time). And when Josh is on the ventilator, his nurses are noting that his tidal volumes (how big his breaths are) are much larger than they used to be. They are amazed.

Josh did come down with a cold though over the weekend prior to going to the doctor this time. His nose was pretty plugged up and lots of drainage. So, we let him stay home after his doctor's appointment and get some rest. And the doctor recommended Sudafed (or the generic kind). We picked that up and also gave him some Afrin Sinus No Drip nosespray. They have really helped and he's feeling much better today (December 3rd).

Dr. Smith (pulmo doc) also wrote orders this time saying:

"amplitude to right 4.5 and left 5.5. If needs adjusting, call Dr. Smith for adjustment values. Rate 7-14 breaths per minute. Hourly checks for CO2 levels while awake. Keep CO2 in 30-45 range. If CO2 <29>

Josh is to use his ventilator when not on the pacers (unless his CO2 is less than 29 and he's needing that to increase).
Here are his ventilator settings:

Ventilator: LTV 950
PEEP set at average of 5
Mode: SimV/CPAP, Pressure Control 24, backup volume 425
Breath Rate ladder for night 12-24. Pressure support at night 14 cmH20,
ETCO2 30-50. Inflate cuff at night.
Rate ladder for daytime set @ 12-18 cmH20 (Do rate ladder last),
Pressure Support ladder daytime 12-25 cmH20 (do Pressure Support first). Deflate cuff while awake.

And these are Joshua's medications:

Bacroban ointment 2%, apply to trach at night
Cortef 5 mg, 1 tablet in the morning
Cortef 5 mg, extra tablet if running fever >99.8
DDAVP Nasal 10 Mcg/inh, 2 sprays each nostril twice daily
Norditropin Cartridge 5 Mg/1.5 Ml, 3 mg subq 6 days a week
Synthroid 0.75 Mg, 1 every morning
Calcium 333 mg, Magnesium 133 mg, zinc 5 mg, 1 each morning
B Complex, 1 each morning
Acetyl L-Carnitine 400 mg, Alpha Lipoic Acid 200 mg, 1 each morning
Flovent 44 mcg 2 puffs twice daily
Pataday allergy eye drops, 1 drop each eye every morning
Ibuprofin 400 mg daily as needed for pain or fevers
Albuterol HFA, 2 puffs inhaled as needed (THIS ONE IS NEW and due to school nurse request - has not been used yet)

I wrote all these specifics that may be hard to understand for the normal person who isn't taking all these medicines or on a ventilator, etc. because I wanted anyone out there who might have a child with this disorder to have it. Since Joshua has been pretty stable with these settings and medicines/vitamins, maybe it can help someone else too.
If anyone reading this is interested in what we use to help keep Joshua's pacemaker antennas in place, we have found this works best for us so far:

Gold's Gym Waist Trimmer Belt from Walmart. It costs $5.00 and made of soft rubber foam material. It is designed to make you sweat off pounds. But we turn it inside out and I've added a little extra velcro to help hold the end of the strap in place. But you can tighten it as much as necessary to hold the antennas in place and it doesn't roll up or bunch up as badly as Ace bandages, etc. Josh simply can't use the tape or bandaids recommended to hold each antenna. The adhesive breaks down his skin too badly.

Oh, and instead of using the belt that came with the pacer box (look at the picture up top and you'll see the boy wearing the box at his waist) we have purchased a small black backpack and placed the pacer transmitter box in it. It keeps the wires from the antennas up high so they don't get in the way when Josh needs to go to the bathroom, etc. Josh likes the backpack MUCH better.

Okay, now on to some fun (well some of it's fun). I work at a daycare that requires me to be fingerprinted. I had an appointment to go do that yesterday (Wednesday). The place I went to for it is right in front of a Big Lots store and a Family Dollar in New Braunfels. While I waited to be fingerprinted, I was in the waiting room looking out the window at those stores. They weren't too busy at that time of the morning, so I thought I'd sneak in there after I was done and see what I could find for the kids. I can't really afford to be doing this (since we are struggling so and really need to come up with our tax money for our house very soon plus I had to shell out 45 bucks for the fingerprinting!) but I just couldn't resist doing a little something for the kids.
This is what I found:

They are supposed to be ornaments for a Christmas tree - little stockings of different kinds. They are so cute. And I found glitter glue stick pens so I could write the kids' names on them. I also found some cheap plastic ball ornaments that were very bright and shiny the kids would love. So I got those to hang from the ceiling in the classroom.

The kids' eyes lit up (not to mention some of the other workers' eyes) when I got to work with my goodies. I'm still working on getting them all put up. I'll do some more of that today when I go in to work.

After work last night, my sister insisted she treat us to the movie, A Christmas Carol in 3D. She even invited my daughter, Steffany (who is about 6 weeks from her due date). We left for the movie after getting my hubby off to work for the night. We dropped by and picked up Steff at her apartment and headed for the IMAX theater on the NorthWest side of San Antonio.

The special effects were great - it is in 3D. But the story itself has been told and retold so many times, it was a bit old to me. Josh really enjoyed it though. He recognized the story from other shows. He was afraid he wouldn't like the 3D part - because he didn't particularly like water or air being blown at him, etc. during past 4D movie experiences. But once we assured him nothing like that would happen, he calmed down and enjoyed the show. Here's a clip from the movie:

And pictures of Josh and Steff from the movie theater:

One more fun thing I'd like to share is a video my sister showed me last night, then we heard mentioned on the Craig Ferguson show, too. It is called Surprised Kitty
I hope you all enjoy it as much as we do!

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!

Discovery Documentary - Life or Death : Battling to Breathe