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)

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