Saturday, March 28, 2009

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.

Thursday, March 26, 2009

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

Monday, March 23, 2009

Spring Break is Over

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


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.

Thursday, March 19, 2009

Quick Trip to Grandma Day's

We are in Odessa this week of Spring Break 2009 visiting with family. But since Odessa is MUCH closer to Spur (and Crosbyton) than San Antonio is, we decided it was the best chance we'd get to go see my Grandma Day and some family who live in that area.

James was still busy working at his parents' house and Steffany was making her rounds in Odessa, so Josh and I went and took my folks (after my dad got out of dialysis Wednesday).

We arrived in Spur about 7:30PM Wednesday, making a quick stop at the Dairy Queen there because my dad decided we needed a blizzard treat :)

Even though Grandma Day doesn't live in her house anymore (since she's moved into the nursing home) we went to stay at her house anyway.

Me and Josh at Grandma's house in Spur

Grandma Day's room looks so empty without her in it

pictures of My mom and Aunt Peggy from a LONG time ago hang in Grandma Day's house

Josh and Mama in Grandma Day's kitchen in Spur

the bed where Josh and I slept at Grandma's house this trip (you can see Josh's bedside ventilator in this shot)

Mama fixing up something for Daddy in Grandma Day's kitchen

the wall of Senior Pictures (of all us Grandkids) at Grandma Day's house in Spur

Grandma Day with her friends at the nursing home

Daddy, Mama and Josh at the nursing home visiting Grandma Day

Josh, Grandma Day and Mama

Mama, Grandma Day and me

We only stayed one night, but we got to see my Uncle Tommy, Aunt Peggy, cousin Amy, Amy's kids (Nia and Ian), cousin Becky's kids (Madison, Maci and Leo Tucker), and Uncle Junior. We didn't have the camera handy to get pictures of them all... but we had a wonderful visit with them anyway.

We weren't able to stay long enough to go track down the rest of the family. We wanted to make sure we got to see Grandma at the nursing home. We spent about an hour there with Grandma. Her memory wasn't too great (we knew it wouldn't be) but we had a nice time with her anyway. She showed us her room and we snacked on popcorn with her and her friends.

When we left, she sure did want to walk with us out to my van, but because of her memory issues, she wears an anklet to alert the staff if she tries to walk out the door. So they came and stayed with her as we left. She told us as we walked out to "make sure and come back often... every weekend, okay?" I sure wish we could!

Tuesday, March 10, 2009

Josh home sick from school today

We think Josh has a sinus infection. He stayed home sick from school Thursday of last week. I thought he had rested enough and was ready to return to school on Friday. He did make it through the day, but felt cruddy Friday evening. He wasn't much better Saturday or Sunday. He told me Sunday night he was NOT going to school Monday. But I worried about him missing too many days, and I sent him anyway.

Well, he was right. He came home Monday afternoon worse than he was Monday morning. His school nurse agreed he seemed worse. So, I called his doctor Monday afternoon. They told us to come over at 4pm. We did and they did a quick flu test. It was negative. But Josh's secretions are really increased, very thick and discolored - signs of either a nasty cold or a sinus infection. So, the doctor and I conferred about which antibiotic to try.

He suggested Omnicef. We got the generic, called Cefdinir. Both are supposed to treat mild to moderate infections like the one we believe Josh has. The doctor also got a sputum culture from Josh's trach, to see what bug might be growing in there.

Josh came home from the doctor's office, ate dinner and went to sleep on the couch. He slept four hours before I woke him to change, brush his teeth, take his Flovent inhaler puffs, get his growth hormone shot and go to bed. He got on his bedside ventilator and went right back off to sleep.

I got up just before 6AM to check on him to make the decision on whether or not to send him to school today. I took his temperature (which was okay) but he had a terribly snotty nose. I asked him if he felt up to going to school. Normally, Josh loves to go to school and see his friends. But today, he shook his head that he was not up to going. So, I didn't push him this time. I just let him go back to sleep and texted his school nurse.

I woke Josh around 8AM because his afternoon nurse had not yet responded to my text messages to her about coming in to watch him early. I decided to just take Josh with me to the Weavers' house. He could sit on their recliner and rest while I worked. His nurse finally returned my message about the time we got there, so she came on over fairly early to help keep an eye on him. Mostly, he just sat in that recliner and watched TV and/or slept.

He finally started to perk up a little late this afternoon. I think we MAY try to send him to school tomorrow (Wednesday). Then, Thursday, his regular school nurse will be out having surgery on her back. There will be a substitute nurse trying to learn Josh while his regular nurse is away. I hate to send him to school sick with someone who is not familiar with him trying to "learn" him during that time. Josh also has an appointment with his audiologist Thursday afternoon, so I'll have to pick him up from school early that day.

Meanwhile, I am starting to feel like I have some sinus issues as well. I've had a sinus headache almost all day and I feel pretty sluggish and tired. I could really use some sleep. Josh's night nurse will be arriving any minute, so maybe we'll get to bed soon!

OH.... The house has been officially on the market a week. We have not yet had any showings, BUT there WAS ONE SCHEDULED today. For some reason, they had to cancel it and said they would reschedule another day. We don't every get a reason why, but we were disappointed after the initial excitement had set in. Oh well, maybe the person God has intended to buy our house will be coming along soon. Spring break is just days away! And you should see all my rosebushes and trees. They are all putting on leaves and buds. They will soon be blooming all over! When they do, I'll take some pictures and post them here.

Tuesday, March 3, 2009

Finally Officially on the Market

It is official. Our house has a realtor and a MLS listing of it's own. If you'd like to see it click here or here.

The listing includes more than a dozen color pictures of the house. They do not show all the work we did on the house, but you can definitely see the new wood laminate floors through the living room, dining room, kitchen, bathroom and laundry room.

Discovery Documentary - Life or Death : Battling to Breathe