I have long thought that the story of my son, Joshua was interesting - even news worthy. He does have something that is quite rare - so much so that even few doctors have heard of it or know what to expect for him. So, I emailed our local news media to see if they agreed with me.

Soon after, I heard from a reporter with the San Antonio Express News, Melissa Fletcher Stoeltje. She writes for the Life Section of the paper and was quite interested in telling Joshua's story.

Stoeltje scheduled an interview with us and came to the house. She tape recorded a lengthy conversation between us, watched a video a friend of mine put together for me, and got a first hand look at Joshua's bedroom which has become his hospital room. She and I spoke several times over the phone since then and she sent a photographer who took many pictures of Josh.

Melissa called me several days ago to tell me the story would be running in today's paper. I looked it up, read it and was very impressed. I would love to share it with you, too. Please pick up a copy of the paper, if you can - or - you can see most of it on my MySpace page.

I heard from the reporter from the San Antonio Express Newspaper this week. She told me that the article she wrote about Joshua and his medical condition would appear in the Life Section of this coming Sunday's newspaper (July 30). I thought I'd pass that along to everyone so you could look for a copy and check out the article along with us. We are so excited!

Some not so great news - we found out that Joshua's bloodwork earlier this week showed he had elevated levels of sodium again and we need to follow up with his glandular specialist doctor. They may increase some medication that helps him retain fluids. Right now he is taking two of those pills at bedtime. They make him look all swelled up. But we continue to have trouble keeping him from becoming dehydrated. It seems like the only way to keep him hydrated is to get him all puffed up with the fluids. It's a viscious cycle.

Anyway, thanks to all for thinking of us and praying for us!

Love,

Vanessa

More pictures from our trip to Orlando:

Below are just a few of the many, many pictures we took on our Magical Trip to Orlando's Walt Disney World, Universal Studios & Sea World Parks:










I'll post more pictures - so keep an eye out for them!

~It's drawing nearer ~

We visited with the representative of Make A Wish today and received our "departure package" which included our itenerary and a backpack full of goodies for Josh. Inside the bag were Walt Disney World books, an airport adventure coloring book (this will be both the kids' first ride on a commercial plane), a disposable camera, colors, sunscreen, Make-A-Wish T-shirts for each of us, and much more.

Today's meeting was also held at Chuck E. Cheese's - which is fast becoming Joshua's favorite place around here. He played games, hugged Chuck E. Cheese and stuffed his face with pizza and soda. It was a good day and we look forward to our *Magical* trip to Orlando.

We still have so much to do in the days ahead to prepare for the trip. Tomorrow, Joshua visits his pulmonologist so she can have one last check on his health. He did have a bit of trouble this morning with sore, tight muscles - which I think has some connection to his getting dehydrated - because once we give him more pedialyte drinks, he seems to feel much better. And if he drinks the pedialyte on a regular basis, he doesn't seem to experience the sore, tight muscle problem at all.

I'm a little concerned with dealing with the dehydration problem and the question of what all medical equipment we are going to lug around to all the Disney parks with us on the trip - but I am sure we'll face those issues ok. Of course the best bet is to ask everyone to keep us in your prayers especially through this trip.

And we will take lots of pictures of our trip so we can post some of them here for everyone to enjoy!

We got some news this morning that we've been waiting for .. for many months.

Rush Hospital in Chicago finally called with dates for when they will see Joshua to evaluate his condition - in hopes that he will be a good candidate (in their eyes) for a diaphragmatic pacemaker. Josh wants this very much so he can get rid of his trache.

We are scheduled to admit Josh to Rush Hospital on Sunday September 24th by 5pm and he will remain there through Thursday September 28th till 3 or so in the afternoon. There will not be room in the room for me to stay and sleep there - but they have efficiency apartments connected to the hospital that I can rent. That way I can stay with Josh till after he falls asleep, then head off to my room and get some quiet rest. There are even little kitchenettes in there so I can bring food there and fix it - to save some money. I asked about the Ronald McDonald House. There is one in Chicago - but not close by - and a taxi ride there and back each day would cost approximately 70 dollars! So it sounds like the efficiency apartments are my best bet.

Between now and September, we will be very busy. The doctor at Rush wants every piece of medical & learning difficulty records on Josh from every source out there - which I have to contact to get those records. They also want Josh to be seen by an Endocrinologist and his ENT doctor again before we go there. The Endocrinologist because Josh dehydrates so easily. The ENT (ear, nose & throat) doc to check and make sure Josh doesn't need a different size trache - they don't want too much air lost when he is on the ventilator.

I need to arrange for a plane trip for Josh and me roundtrip - but to make sure the tickets are NOT non-refundable - just in case they have to change the dates. And I need to book the efficiency apartment at the hospital. And of course - I need to raise a lot of money soon so we can pay for all this - yikes!

With all that said, please keep us in your prayers and let's all watch for God's hand in this!