Wednesday, April 29, 2009

More Swine Flu, Cancellations and Ice Cream

The swine flu forced break from school this week continues with daily reports of closures and increases in numbers of people who have or had it.

Our school district now has 5 confirmed cases. Today, the UIL announced the cancellation of all sporting and academic events until at least May 11th.

We also found out today that the Special Olympics track and field competition Josh was supposed to participate in this Saturday is off. (So, we have a day free this weekend to go fishing)

There are 2 more school districts in our area closing due to the swine flu (or H1N1 flu virus). New Braunfels and Comal ISD are closed until May 11th at least.

Churches are closing, parks are closed, many stores and restaurants in our area are nearly empty.

There was one exception tonight... the Baskin Robbins at the Forum was hopping tonight as they celebrated 31 cent scoop night to benefit firefighters.

Josh and I dropped by and picked up ice cream and looked at the fire trucks after we went to eat dinner at Cici's Pizza - where Steffany started working recently. She does a pretty good job greeting customers and ringing them up and sending them on through the line.

I still think Steffany probably had the flu.. maybe even swine flu, since she had her illness (which was pretty bad) about the same time (Apr 7th-11th)as the other kids in her school who had confirmed cases of swine flu. But luckily, she got over it and has been nice and healthy ever since.

Josh had a bad stomach bug the end of March, but he has been relatively healthy ever since.

We heard today that the hospital where Joshua goes pretty frequently to see his pulmonologist and get some bloodwork done has one confirmed case of swine flu in a child they are treating there. That makes me a bit worried about taking Josh anywhere near there. I know they take so many precations, etc. but I just don't want to think of chancing it.

And I'm worrying about how things will be as we get nearer to June - when Josh is supposed to have surgery for his pacemakers in Houston. I'm praying this flu business is a mere memory by then.

Until next time, remember to wash your hands often so you too can stay healthy!

Sunday, April 26, 2009

Swine Flu Frenzy

Our world today seems to be a little crazier than usual due to something called the Swine Flu.

A couple of 16 year old boys in our local high school came down with the illness and have recovered... a third was sick with it this past week. He too is recovering.

But because they all went to the same school.....

and because thousands of people were sickened from this flu in Mexico - 80 of them died of it...

our state's health department is taking some serious precautions.

First it was announced Saturday that Steele High School would be closed until further notice - at least a week.

That had me wondering if we'd have church today or not. Our pastor decided to go ahead and have services, but to announce that if anyone felt sick, they should stay home. Anyone else could decide for themselves whether or not to attend.

After church, there was a news reporter from a San Antonio tv news station at our church, wanting to interview our pastor about why he chose to have services.

On our way to lunch, we noticed that every park we passed was closed with signs posted from the health department - closed until further notice.

Then this afternoon, we got a recorded message from the school superintendent that they had decided to close down ALL the schools in our district for a minimum of a week.

And I just got three phone calls from different people in my church telling me that AWANA tonight at our church was being canceled. The AWANA comander says he made the decision after hearing three or four people in our AWANA program was sick - some with flu like symptoms.
So far, nobody in our family is sick at all. And we are praying that we remain healthy. But this is getting really worrisome.
Here is a link to some news articles about the swine flu in our area:

Sunday, April 19, 2009

AWANA Games and more fishing

We have AWANA at our church and this weekend was AWANA Games... something our kids prepare for all year during club on Sunday nights at church.

AWANA games are kind of like the Olympics for them... only the games are a bit different. There are a few games played with bean bags, others are relay races, a three-legged race and a 4-way tug-of-war.

Joshua participated in a few of the events with his team... one of his events was a relay race. He was the lead runner. His team won 1st place in this race!!!

Joshua was on his ventilator most of the time when he was not doing a race. He was pretty sweatty and his CO2 was high a bit - especially early on in the day. But as his numbers got better, and he loosened up a bit, he was able to stay off the vent for bigger stretches of time without his symptoms being so bad.

We were there for about four hours... because his team did so well (placed first on their circle) that they went on to the finals. Out of the twelve churches represented at AWANA games, our kids got 4th place. That is the best I think I've ever seen them do ~ and I'm so very proud of the kids. They were real team players and acted very well behaved.

After AWANA Games, we decided to go out to the lake and do a little fishing. Last weekend when we went, I had no luck at all - not even a bite. The guys both caught fish (not many, though) last week, so I thought it was my turn this time. And sure enough, I had better luck this week. I caught a nice bass - not quite long enough to keep, I don't think. And I think it was full of eggs - so I wanted to make sure and let it go have more fish for us to catch someday.

And Josh caught a perch, so he was happy, too.... although he was sure hoping to catch a big catfish or bass, too.

James and Josh were sure hoping to get back out to the lake again this afternoon to do some more fishing (especially since James didn't get to catch any fish this weekend - he kept getting hung up on rocks) but we have AWANA tonight at church and don't have quite enough time to go fishing and get back in time for club.

Friday, April 17, 2009

Doctor visits, Easter, Special Olympics practice

It's been a busy week of doctor appointments.
I guess I haven't eaten enough apples lately....
you know, an apple a day keeps the doctor away.

Monday, the lady I take care of, Mrs. Weaver had a doctor visit at her home.

Tuesday, I drove Mrs. Weaver and her daughter to another doctor appointment - an ear, nose and throat specialist.

Wednesday, it was my son, Joshua's turn.
He went across San Antonio to see his Endocrinologist.

The news there was that Joshua had gained 6 pounds since his last appointment there 3 months ago. Joshua is finally officially 5 feet tall. His body mass index came down slightly, but is still way too high. So, we are working on reducing his caloric intake as much as possible. We are also trying to get in a little more activity where we can.

The problem is exertion causes Joshua's CO2 to rise - sometimes dangerously high. That is because Josh is used to breathing pretty shallowly and his body doesn't tell him to breathe bigger as his CO2 rises like a normal person's body does.

The doctor decided to have us increase the amount of his growth hormone dosage to 3.0 mL (that is up from 2.85 mL) 6 nights a week. And he ordered bloodwork to check and see if he needs an increase in his thyroid pill. We have not yet heard any results on that.

Thursday, Joshua, Nurse Jenny and I hit the road for Houston to go see the surgeon who will implant Joshua's phrenic nerve pacemakers (those of the diaphragmatic or breathing pacemakers).

We officially set the date for that surgery - June 17th, 2009. We learned that we can expect Joshua to be in the hospital about a week following surgery. And the surgeon said the pacers would need up to six months to fuse themselves inside his body before he could turn them on and use them instead of his ventilator.

At that point, Joshua would use the pacers for a set length of time and build up the tolerance of his diaphragm to the pacers. But all of that will be discussed further with his pulmonologist who will be monitoring everything after the surgery is complete. So, we will plan on keeping everything the same as far as nursing, school, etc. until further notice. But there is hope at least that one day, Joshua may not need his ventilator any more!
Looking out the window of the surgeon's office
We were so lucky (or blessed - or both) during the trip. We had the best weather for making the drive to Houston and back home. We had heard reports that storms were expected. It was cloudy and breezy, about 65 degrees when we left home around 8:45 Thursday morning. But the rain held off. We just had mostly cloudy skies the majority of the drive. Temperatures were only up to about 78 degrees for the high. Even on the way home, all we had were cloudy skies with breezy conditions. On that route today, just one day later, there are severe thunderstorms and even tornado warnings!

Looking out the front window of our van as we
drove through Houston

Traffic wasn't too bad either, with a couple of exceptions. We did experience a little taste of relatively heavy Houston traffic. But we left the hospital around 3:30 - well before the nasty rush time. We made it home around 6:45.

We would have been home a bit sooner but we stopped to check Joshua's post office box. Unfortunately, he didn't receive any mail, but maybe he'll get a little bit more as his surgery draws near.

I've tried to guage Joshua's feelings about the surgery and getting the pacemakers. I've told him as much as I know about them - that they would have to make cuts into him to place them and then sew up the cuts. He would hurt after surgery for a while and have to stay in the hospital for a while. But we will be there with him. The pacers - we hear - when you use them should feel like something is vibrating inside you, but at least one person we heard from says that feels good, like getting a massage. And of course we all hope they will work so well that Josh may not have to keep his trach and vent forever. I think Josh is taking it all in good stride and is about as brave a patient as I've ever seen.

Meanwhile, Josh has several activities to keep him busy.

He is still playing his bells - and had a solo contest at school Wednesday evening. We can't wait to hear his score.

He has AWANA games to go to tomorrow (Saturday). He participates in the bean bag toss race for that and cheers on his team-mates for most of the other races.

Josh will be in the Special Olympics track and field coming up the first Saturday in May. He will be doing a 50 yard run and a softball throw. He has practices each Monday evening until the big day.

Josh at Special Olympics

And we are gearing up for another big TAKS testing day April 30th - for Science.

How about the rest of the family???

Steffany is still playing violin at church and at school. She went on a field trip earlier this week to perform for several other schools - including Joshua's. And she is teaching a little boy from our church to play violin Thursday evenings at our home.

She is engrossed with watching tv shows like Bones (a murder investigation show) and House (about a doctor with an addiction of his own). She was reading the book and watching the movie Twilight (about a human who falls in love with a vampire, she tells me) and it made Josh want to watch and read the story, too. So, he is carrying around the book and reading it at his appointments and during our drives - even though it is beyond his reading level, so I'm not sure how much he understands about it.

My husband, James has been working alot, as usual, and trying to find opportunities to go fishing. His dad, who has terminal cancer, had some fairly good days recently and even got to do some fishing of his own last weekend. We are praising God that He has allowed Tom (James' dad) to feel well enough to do something he loves so much. Tom's doctors thought his cancer would kill him within about three months - but that was about 7 months ago. So, doctors don't always have the answers - thank God! We are still hoping and praying for a miracle cure for Tom.

James talks to Tom on the phone as often as he can. Most days that happens around lunchtime when James usually comes to eat with me at the Weavers' house. But with so many doctor's visits this week, I haven't been available as much as usual.

And we still have our house on the market, waiting for the right person to come along and offer to buy it. It has been on the market for about 6 weeks now, and we have had 5 showings. Maybe that will pick up as summer approaches. We are all working to keep the house in good condition in case someone wants to show it.

Below are some pictures from Easter
(egg hunt and then fishing)

Saturday, April 11, 2009

Easter and Fishing

Happy Easter everyone!

We - like many others all over our country - are celebrating Easter with some colored Easter eggs. We dyed ours last night.

Josh - even though he is 12 years old now - believes in the Easter bunny and that we need to get eggs ready for the bunny to come and hide for him. That is sweet. But of course it's not really the true meaning of Easter. I am so glad that he knows that. In fact, last week we watched the story retold again at our church through a musical performance called "The I Am."

It shows Jesus performing miracles and being loved and praised by some. Then, being betrayed, beaten, crucified. His followers were scared for their own lives, His mother and others mourned His death.

Then, he rock at His grave rolled away... and "then came the morning! night turned into day! the stone was rolled away!" Jesus was resurrected, praise God! And because Jesus overcame death and provided us the one and only way to heaven, we can overcome death as well. So, Happy Easter everyone. I pray that each of you knows Jesus as your saviour!

This Easter holiday weekend, besides planning an egg hunt for Joshua (Steffany says she is too old to hunt for eggs. She might help hide some, but she's not hunting for any.) We are planning to do a little fishing.

We have been trying to find a time when the weather would be nice and we didn't have too many other things keeping us from it, to drive over to the lake and put our poles in the water. Today seems like the perfect opportunity.

But before we go, I wanted to let everyone know Josh seems to be doing very well. His temperature was normal this morning and he got up and is getting ready to go fishing. We are still planning to see his Endocrinologist this coming week and then we'll travel to Houston on Thursday to see the pediatric surgeon who will implant diaphragmatic (breathing) pacemakers in him. That surgery will not happen until school is out though. This will be a question and answer session as well as a time when we get the paperwork off to the insurance company(ies) so it can be officially approved and paid for.

And.. another note.. our house is still on the market. We have had 5 showings so far. The last was yesterday (Good Friday) afternoon. We have heard no feedback on that one so far. We are still leaving the sale of our house and purchase of a new one in the Lord's hands.

My husband just came in and says everything's ready to head to the lake, so I'll sign off now.

Wednesday, April 8, 2009

My Heart Breaks for Baby Kaylee

Last night, one of Joshua's nurses told me she'd seen on the news a very disturbing story of a baby named Kaylee Wallace.

photo courtesy Global TV

This 2 month old baby who lives in Canada was on the news because her parents, Jason Wallace and Crystal Vitelli want to donate Kaylee's heart to another sick child. Watch the news story below:

What is so disturbing to us is that in the story, doctors called baby Kaylee terminal. But in the stories I've read, it was reported that Baby Kaylee just cannot breathe on her own when she sleeps. That is the same problem children with CCHS and even some children with ROHHAD have. Baby Kaylee's medical condition is called Joubert Syndrome.

Joshua's nurse is convinced Baby Kaylee is a viable child who can live a good long life if she is given the chance to be ventilated properly when she sleeps. But she is afraid the parents of this sweet baby girl do not have all the facts they need to make that decision.

I pray that if Kaylee can live a good life just by being on a ventilator when she sleeps - like Josh does right now - that somehow the Lord will intervene and lead her parents to the information they need before it is too late for Kaylee.

Here is a link for more information about Joubert Syndrome.

Here is a link to a website for the CCHS Family Foundation.

What do you think?

Friday, April 3, 2009

Pacer News, House Showings, and a Ferrari too

Josh Pacemakers

We finally got a call from someone with the surgeon in Houston who will perform the operation to implant diaphragmatic (breathing) pacemakers into Joshua. He wants to see us in his office for a pre-surgery meeting.

We need to fill out all the necessary forms and he has to do his official screening so that insurance will pay for the devices as well as the surgery. They explained to us that this device - unlike most that are implanted into someone - must be paid for before the operation. They cost $65,000 from the manufacturer. The hospital cannot get them until insurance (or we) pay for them in full. Then, of course, insurance would have to pay for the surgery itself - but that is not the unusual part. Anyway, it could take a month or more just to get approval for the payment.

They want to do the surgery(ies) as soon as possible after school is out for the summer. That means we need to get into their office ASAP. This doctor only sees patient in-clinic on Thursdays. So, we set the appointment for Thursday, April 16th.

I still need to call Medicaid Transportation to get assistance with traveling expenses. But, Joshua's afternoon nurse has agreed to go with us, since it is a day-trip. That is great because on our last trip, Joshua's ventilator was giving me problems and I could not look at it because I was caught in Houston traffic - not a good combination.

I got the chance this morning to talk to the mother of a CCHS child who has had her pacers for about 5 years now. She talked to me about her decision to have her daughter paced and how difficult the surgery was on her - well, actually the harder part was the month long recovery from surgery. But she says it was all well worth it in the end because of the quality of life her daughter has since being freed of her trach and ventilator. She also did not understand why any doctor would say Josh would still need his trach or vent after getting the pacers up and running, or why they would think you have to build up into using them for certain numbers of hours. She said that was never an issue with her daughter. She had so much other good advice to share. We talked for over an hour on the phone. It was great stuff to help me come up with questions for the doctor when we go April 16th.

House Showings

Our house has been on the market here now for about a month. And before this week, we had only had one showing ~ and no feedback on it. But then, there was a showing yesterday, another one was set up for today, so Josh and I had to leave as soon as he got home from school. And now, there is another showing scheduled for Sunday morning. That is encouraging to finally have a bit more interest showing in the house. Josh is excited and hopes the house sells quickly. He has his eye on one house in particular that is near his Aunt Amanda's. The formal dining room in that house looked to him to be the perfect place to put a pool table - not that we have one or anything :)

Busy Day today

We had a very busy day today. After school, since there was a showing scheduled, Joshua's afternoon nurse invited us to come hang out at her house.

We rented Marley and Me and took it over there to watch it. Then we came home and got ready to go watch a musical play at our church called "I Am."

It's a dramatic re-enactment of some of the miracles of Jesus along with his death burial and resurrection. It was very moving. Afterwards, we went out to eat at a great Bar-B-Cue place called Harmon's where a Christian Band was playing, so we got to listen to some great music, too. By the time we got home, it was about 9:30. Josh sacked out quickly on the couch soon afterwards. I had a time getting him to wake up for his growth hormone shot and to get ready for bed.

A particularly stupid Ferrari owner

I have to end this blog by sharing an incredible story I heard tonight about a drunk guy driving a 2000 model Ferrari who ended up stuck on some train tracks.... take a listen:

Stupid 911 Call as Train Hits Ferrari - Watch more Funny Videos

Discovery Documentary - Life or Death : Battling to Breathe