Family Fitness Fun

Joshua was one of a select few invited to attend a Family Fitness Event today at the AT&T Center in San Antonio. Here is his invitation:

According the the San Antonio Spurs Website, Bruce Bowen
"in the spring of 2004 launched GET FIT with Bruce and Buddy, a comprehensive program aimed toward fighting child obesity in San Antonio … teamed up with H-E-B and the Spurs Foundation to promote healthy living through fitness and nutrition … during the 2004-05 season over 2,000 boys and girls participated in the program"

Registration started at 8AM and the "race" began at 9AM... so we had to get up and get there EARLY for a Saturday morning.



After we arrived, we got to stand around out in the cold (44 degrees) and wind for at least half an hour before much was happening.



Then a couple of girls from a local fitness center were on hand to help warm everybody up with some stretches and lots of jumping jacks. Even the Spurs Coyote and HEB'S Buddy did their stretches... The last stretch was the Coyote's special eyeball stretch where he took his eyes off his face and turned them about. That had everyone in stitches!

Then, the Spurs #12 Bruce Bowen arrived in a special Get Fit green shirt and his knit tobaggon hat (because it was cold out there). He stepped on stage to welcome everyone for coming out.







Then, he, Coyote and HEBuddy went to get into place to walk/run with the kids and families...... and we were off!



After the race, all the kids were treated to fresh fruit from HEB, medals and certificates for completing the race. Then, they drew names for special prizes. Josh's name was not drawn. And he didn't get the chance to actually shake Bruce Bowen's hand, have his picture taken with him or even speak to him, but Bruce did see us as we crossed the finish line, pushing Joshua's ventilator cart. Instead of mentioning anything to do with the ventilator or tubes connecting Joshua to it, he mentioned Josh's dad's hat - a Dallas Cowboy's football hat.



Bruce talked about San Antonio hosting the Cowboy's for training camp. Josh - after hearing that - decided he should have worn his own Dallas Cowboy's hat. We told him that was okay. What was important is that we all went out together and exercised and had fun.

If you'd like to read more about Bruce Bowen, the Spurs and the Family Get Fit event, click here.

It's hazy and drizzly out this Thursday morning. The roses are loving it, though and are blooming like crazy. My front porch looks and sounds like a sanctuary to get away from it all.



Joshua seems to be getting better and better each day this week. On Monday, his temperature on waking was over 100. He was so sweatty and pale and said his throat hurt. His oxygen and CO2 numbers were not so great - especially when he would be off his ventilator for any amount of time.

His temperature comes down a fraction of a degree each morning when he wakes. And we have noticed his CO2 is lower even when turning down his ventilator - more so each day. Last night, his nurse was able to turn his ventilator down to the lowest setting and keep him there all night and his oxygen and CO2 numbers were great. He woke up with a slightly elevated temperature, but much better than every other day this week. And he was not sweatty this morning.




We also had some GREAT news from school this week. Joshua took the reading portion of the TAKS test before spring break. We were all worried (because he has been so far below grade level in reading and math) that he might not pass the TAKS. If he did not pass, it would take an ARD (admission, review & dismissal from special education) committee decision to pass him on to 6th grade next year. He would have up to three chances to pass each portion of the test. But on MOnday, we learned Joshua not only passed the reading TAKS, but if he had not changed a couple of his answers at the last minute, he would have had commended results. That is so awesome, we were all jumping for joy!!!! He still must pass the Math and Science portions, and math has been pretty difficult for him so we'll keep our fingers crossed. But since he passed the reading portion, he does not have to keep doing these special assignments called RRJ (reading response journals). They were something that had his nurses and me working overtime to help him with. We are SO GLAD to say goodbye to the RRJs!



We do have a new challenge on the horizon. We have learned that the company that has provided Joshua with his two ventilators, oxygen concentrator and most of his medical supplies is going out of the ventilator business and will be transferring his care to another company. That means we must turn in his ventilators and O2 concentrator and get different ones from another company. Anytime you have to switch out equipment that you've had all hooked up as intricately as we have with his tubes, wires, carts, etc. it can be an ordeal. So, hopefully the new company will be able to provide the exact same kind of ventilators (or maybe better, smaller ones - but I doubt that).

Diaphragmatic Pacemaker

And we are still waiting to hear back from the doctors in Houston as to the next step in preparing for the surgeries for the diaphragmatic pacemakers. We know they wanted to get started on them soon after school is out for the summer. The last day of school here is June 4th

Spring Break is Over

We are all heading back to school and work today after Spring Break.

Josh

Before the break, Josh had been out sick from school some. His doctor put him on antibiotics. Josh finished them up while we were out of town. He says he feels better and his nose isn't running like it was before, but he is still running fevers - especially in the mornings. One morning it was up to 101.3 degrees - the highest he's had in months (maybe years). And he is very sweatty - especially in the mornings. Last night, after Josh got ready for bed and I hooked up his oxygen monitor (before connecting him to the ventilator again) his O2 monitor was alarming. It showed he was down to 83 percent! And his face looked pale. So, I tend to believe his oxygen was low. But, after just a couple of minutes back on the ventilator and with his cuff inflated, his oxygen went back up to 99 percent and stayed up near that all night long. Still, I worry about him. His temp this morning was 100.2 degrees when he woke up.

His school nurse, Maria, is recovering from her surgery on her upper back/neck area done just before Spring Break. She is in a neck brace and looks pretty uncomfortable. But she reports that her pain in her arm is gone. Still, between her aches and pains and her trying to take care of Josh, I worry about her too.

My back pain is a little worse than before Spring Break started. In fact, last night it hurt bad enough for me to take a muscle relaxer pill again. It hurts near my tailbone and all down the back of my right leg. I think I'm gonna have to give up and call my doctor again and set up an MRI. I was hoping I could avoid it, but I sure don't want this getting worse. I'm a bit worried about how bad it will be as I go back to pushing Mrs. Weaver up in bed and getting her positioned on her Barton lift chair. I'll be wearing my back brace, so hopefully it won't be too bad.

So, here (below) are more pictures from over Spring Break (remember, I posted some from our visit with my Grandma Day in the last post). These below are mainly of my nephews and neices, but there are a few of the floor James (and his brother and nephew) put in for his dad and even one of Tom with his brother that Josh took right before we left Odessa on Saturday. Tom's doctors told us 6 months or so ago that they didn't think he would live more than 3 months or so. And here he still is. He has lost alot of weight and is in pain almost constantly, but he doesn't let it keep him from getting up and moving around and visiting with everybody. And he even tried to help the guys as they worked on the floor. We kept telling him to go sit down and let them get it, though.