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March 10, 2003
3.10.04-Update
Insurance
After many calls and complaints filed, Sean's insurance coverage was back to normal Saturday morning. Now to get the medications and appts for everything.
Appointments
Sean's ECHO on his heart is scheduled for the 24th. I will let you know what they find out. I am very anxious to know. Ken is going to take the afternoon off to be there.
The CT of his lungs is still be tossed between Sean's two insurances. He does have to be sedated, which is why no one wants to pay for it. ARRGGHHH! Ken is going to do some phone calls today to see what he can do. We are ready to file a malpractice suit against either insurance if they don't get their acts together. I was thinking about this cyst. It could be maligant and this waiting is making it grow. I hope it isn't, but we need to look at every possibility of what it could be.
Sick again
Just as we thought Sean was ready to go back to school, he came down with horrible case of intestinal flu. 105 fever that would only go down to 101. He could not keep anything down for several days. Diarrhea for a week. Each time he would have either, he would have an anxiety attack and it would take all of our energy to calm down. Today-he is doing wonderful! Still a bit high strung, but a marked improvement over last night. YEAH!!!! WHile he was sick, his g-tube was a blessing! We were able to hydrate him through it and avoided a trip to the ER for IV fluids, which is what was going if he couldn't keep things down and the fever under control. Thankfully by Sunday the fever was gone as was the vomiting. He lost about 8lbs and is as skinny as when he had the g-tube placed at Christmas.
Kindergarten
Yesterday was Kindergarten registration. Thank you to Ken, who took the day off to do this. I had to take Sean to a Dr appt for his g-tube.
We filled out tons of papers just for normal kindergarten kids. Since Sean's surgeon and Pediatrician feel he can not attend a full day of school due to his health and lungs, we get to fill out more papers as do the Drs. Sean will be in a normal general ed class 3 days a week. 2 days a week, a tutor will come to our home and work with Sean. The school district is complaining about this, but the law says he can go to school in the least restrictive enviroment. We also have a Special Education attorney. The school district wants him in a Special Day Class. His special education teacher is on our side and says he is developementally at his age level and more. He has physically limitations in his hands and because he has Chronic Lung Disease on top of Asthma, he can't do much of the physical things as well. things like PE or vigorous activities.
The joys of having a special child! we love them so much, but others see them as a hinderance. Too bad. They miss out of on some of the greatest joys these chlidren bring.
Not much else is happening in Sean's life today. It could change tonight or tomorrow or evern next week.
Oh, Sean did have his mickey button changed. The hook up valve went bad a month early. Oh well. The nurse was suprised we didn't change it ourselves. Not this time, but next. I wanted to make sure the opening was healed enough before I tried to do it. It is healed very nicely, so I am ready for next time.
I am off, Sean wants to do some painting and I do too!
Have a wonderful week!
Shelly and Sean
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