I was forwarded a news story
about a little girl with
the same diagnosis with Josh.
I very much want to get in touch
with this family so I can visit
with them and share our
children's experiences.

The story begins.....

It's not every day that an 8-year-old travels
to Capitol Hill to advocate for Medicaid funding.

But Drew Szandrocha is on a mission. He has already
saved his sister's life once, and now he wants to do it again.

In December, Drew woke up in the middle of the night
because Jenna, 4, who slept in the same room with him,
was in a seizure and having difficulty breathing.
He immediately ran to get his parents. Jenna was rushed
to Connecticut Children's Medical Center in Hartford,
where she spent four months in the intensive care unit
and was diagnosed with a rare disease called
late-onset central hypoventilation syndrome
with hypothalamic involvement.
People with the disease cannot breathe spontaneously,
especially at night, and often need a ventilator to survive.


Here is the website for that article: http://www.courant.com/news/local/nb/hc-soumedicaid0614.artjun14,0,1105186.story


And on a sadder note - I also found a case study tonight
on another child who had the same diagnosis. As I read,
I would have thought it was Josh they were talking about
if not for the years.

It includes:

The patient had been a healthy child whose
medical problems surfaced in 1999
(just prior to his ninth birthday)
when his mother noticed a weight gain.
Throughout the year, the boy had experienced
excessive weight gain, night time snoring,
and increased daytime somnolence.

Josh's medical problems also surfaced
just before his ninth birthday.
But the child in this article died.

You can read the article at this website:

http://www.msufame.msu.edu/
researchforum/admin/submission/
printAbstract.php?ID=365

My heart breaks when reading about that -
but I pray Josh's outcome is better -
much better!

Please God, help Josh!!!!!

Joshua had some new symptoms begin Friday (June 23rd).



He woke up and had rolled out of his bed. I heard his ventilator machine alarm because his rolling off the bed made the ventilator tube pop loose from his trach. Since he was awake, I turned off the vent and tried to help him sit up on the floor. But he groaned and said he couldn't sit up, he was hurting. I asked him where he was hurt and he indicated his back, legs and arms hurt. He had also wet the bed (which is something he doesn't seem to be able to control much either lately) so I was trying to get him up to get him changed out of his wet clothes.

I got him up on his feet and a moment or two later, groaning, he fell over onto his bed. His muscles were really giving him trouble. I felt of them and they were really tight. I got him cleaned up and in new clothes and all and was trying to massage his arms and legs, which didn't seem to help too much.

We tried rubbing him down with Ben Gay ointment, but he continued to hobble around and complain. He seemed to be darker than normal under his eyes, so I thought maybe he was becoming dehydrated. I gave him a generic pedialyte - about three small glasses full, and he started to act like he was feeling better after a few hours.

The next day, Saturday, Josh didn't seem to feel so tight. He did try to take it a little easy that day like he was worried he'd start to hurt again. Then Sunday morning, he woke up wet and sore again and he started asking for the Ben Gay again. He didn't seem as sore Sunday (today) as he did on Friday, but both days he also complained that his stomache wasn't feeling too great either.

We have not yet talked to his doctor about these symptoms. We wanted to see if they were something that would pass quickly or something that seemed to be recurring first.

Reminder - Josh was diagnosed with a rare & serious breathing disorder, Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction, last fall. He showed the most serious symptoms of this illness in March of 2005, before doctors realized what they were dealing with. At that time, Josh's oxygen saturation level had dropped dangerously low (50 percent). He was quickly hospitalized and went into respiratory arrest the next morning.

Doctors had an extremely difficult time reviving him and getting a tube into his throat where they needed it to hook him to a ventilator. (at that time, he didn't have a trach). He had pneumonia and swelling in his brain, lost the feeling and control of his left arm and leg, and suffered a seizure during the 2 weeks he spent in ICU in March 2005. Doctors at the time, thought he might have had an auto-immunde disorder and treated him with powerful steroids until he seemed strong enough to come off the ventilator and began getting feeling and strength back in his left arm and leg.

Joshua received out-patient physical and occupational therapy follow-ups and a visit or two to the neurologist after his hospitalization. They all thought he was getting back to normal, when he went back to school in the fall and his oxygen saturation levels showed another big drop. He was hospitalized again - but transfered to another hospital - Methodist Children Hospital in San Antonio. He remained there - on a ventilator - for six weeks. He emerged with a trach and the new diagnosis. He has been carefully monitored by a pulmonologist, a glandular specialist and ear, nose & throat specialist since being released from the hospital this time.

Joshua only takes Potassium on a regular basis - no other drugs. He does have trouble fairly often with his sodium level - he becomes dehydrated very frequently.

Also - please remember I share some of these embarrassing (for Josh) details and all because I hope it will help Josh and/or others who may have something similar - hoping we can find answers to these problems.

We have sure had a busy week.

Steff went to Odessa to visit everybody there.

James has been working 12-13 hours a night each night this week.

Josh and I have been doing the following:

9-Noon Soccer Camp (see him in the picture below - he's wearing a jersey with the number 92 on it -he's standing to the right side of the picture)



12:30-4:45pm Caring for an elderly couple in their home. The wife is not able to get up on her own. I help her transition from her hospital type bed to a wheelchair and back again. I help get them lunch and do a little cleaning, help with bedpans - that kind of thing.

4:45-5:45pm We head home to get James coffee and make sure he's awake, getting ready for work. We fix some dinner, eat right quick and head for:

6-9PM Vacation Bible School. The theme is:



Be cool! Be courageous! Follow Jesus!



Josh is in a group known as Da Bears (1st through 3rd graders). I have been working in the arts & crafts. We had been entering and exiting through an igloo made of milk jugs and such but we had a particularly windy day and the igloo is now toast - or mush - or experienced an avalanche. It's in a big pile over to the side of the entrance. And the church has a "snow" machine that blows bubbles out on you as you leave. It's a big hit with the kids.

Today is COOKIE FRIDAY at the soccer camp and PARENTS NIGHT at VBS. Then it will all be done and over - kind of a relief.

Josh has really enjoyed all of this - except for the heat and dust at soccer camp. That has just about taken its toll on both of us. We have had a cooler and folding chairs we've taken with us out there each day and made sure to take lots of time sitting in the shade and drinking.. and drinking.. and drinking some more. We can't afford for Josh to get any more dehydrated and end up back in the hospital!

Well, it's getting late and I've got much more to do to be ready for all of today's activity so I'd better run. God bless!

Check out Josh sitting in a Mustang Shelby









We went with some of our friends to a car show this weekend.

As you can see, Josh had a great time as he got close up with these hot rods.

See more pictures of a couple more of the hot wheels below:

This entry is not about Joshua or his medical condition.
We had a tragedy in our family this past weekend and
I wanted to take a few moments and ask for your prayers
for my cousin, Toby Day and his in-laws, the Blands.

Toby's wife, Karyn D. Day, was travelling with her parents
in a car from Georgia back to their hometown of Pearland,
South of Houston, when along I-10 in Louisiana about 7:30AM Sunday,
June 4th, they were involved in a terrible wreck.
It claimed Karyn's life. She was pronounced dead at the scene.
Her mother, who was driving the car, was very badly injured
and airlifted to a nearby hospital. Her father was also injured
badly and taken to the same hospital. At last report, both of
Karyn's parents were in very critical condition.

At the time of the accident, I am told that Toby had been ill
and his lung had collapsed and he was in the hospital himself.
Doctors permitted him to leave the hospital so he could travel
with his older brother to claim his wife's body. A coroner
told Toby that Karyn did not appear to have suffered any
external injuries, and an autopsy was being performed
early this (Monday) morning.

There is no word yet on funeral arrangements, etc.
but as you can see, this family is in dire need
of your prayers and support.

Toby and Karyn did not have any children,
but had been married for about 6 years.
Karyn, 28 years old, was a school teacher.

To read more about the wreck, you can go to this website: http://www.2theadvocate.com/news/2928546.html

Pardon me while I cry



When I think about what Josh is going through and I put myself in his place, I feel like he should be so upset, angry and confused. Right now he is dealing again with being dehydrated and having doctors order for him to drink constantly all day. Then he retains water and is so puffed up, it seems his body can barely hold all the fluids. He has got to feel upset about that when he looks at his reflection in the mirror. And when I think about how he must feel, but he wont say anything, it tears me up inside.

And everytime he gets tired watching a movie or sitting in a meeting or in church and starts to nod off, instead of just letting him rest. I have to force him to stay awake because he is not hooked to his ventilator and he will stop breathing enough to keep enough oxygen in his blood. He gets so frustrated with us pestering him to stay awake. And I wish more than anything that I could just let him fall asleep for just a short nap. But I get so scared about what will happen.

And when someone talks about going swimming or to a waterpark, I know Josh has to feel so bad because he wishes he could go too, but he cant risk any water getting in his trach it could drown him so quickly. I even had a terrible nightmare that he fell into a pool of water and drowned before we could get him out.

Josh almost never talks about his feelings about all that is happening with him or what his future might be like. I am a bit worried to ask him, too. I dont want to say the wrong thing and add to his worries or get him depressed. I just keep thinking about how I see myself in the mirror and get a little down from time to time then I just imagine especially when his whole body has changed so much what he must be thinking or feeling but wont let it show.

I just pray to God that He blesses Josh in some special way for how he has dealt with all these horrible things going on with his body.

We have been working on the beginning stages of a benefit effort to raise money for when we will go to Chicago for Josh to be evaluated for a diaphragmatic pacemaker. We are hoping that will help him be able to do without the trach someday. All of these money issues have also gotten me down. I hate to ask people for money. I hate to say we are a cause that deserves someones money. I know we have been blessed to live in a good home and we have running vehicles and internet, cable tv and cell phones. I also know we are scraping to get by to pay for those things much less the trips and all the other expenses and medical bills coming our way. I just hate to feel so undeserving of anybodys help.

We have talked about selling our house and moving, but we believe that God has a reason to keep us where we are. The school district has been the best one weve seen in all the help they have given us. Our church family has also been tremendous throughout the past year and a half while weve struggles through hospital stays and mounting bills, etc. And housing prices around here have skyrocketed over the last couple of years. I doubt we could find a house even half as nice as what we have for what we owe on this one. I cant see us saving enough money in the selling of this house and purchasing another especially when you add moving costs, etc.

I sure dont have the answers to any of these questions, concerns or worries. I have put my faith in God for all of this, but I am only human. I have my moments like this now when I break down and take inventory, of sorts, of my feelings and emotions. I know God has promised not to give us more than we can handle but he has sure given me my share. And I am trying my best to carry it all. Pray for me for all of us. Thanks!