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January 27, 2003
1/27/04
Good Morning! What a better day already for me! I was knocked to the ground with the flu and today is the first day I feel somewhat normal. I still don't have much of a voice and can't hear very well or breath, but I am craving food and it TASTES GOOD! WHen I get sick, food tastes awful, just adding to my misery. I need to watch how much i take in since I am trying very hard to lose some unwanted baby fat from 4boys. I have joined Curves to help with that and to relieve some stress. Tomorrow is my second day!
Anyway, on to Sean.
As I pondered what I could possibly write about, many ideas flooded into my brain. I feel more freedom to write about Sean and the experiences I have had being his mom. Both good and bad. The things I have learned about-the easy and hard ways. The joys and sorrows. There are just so many things and thank goodness I can span them out over time, if I don't forget!
So I thought I would write about what is going on currently in Sean's life or rather my life because of Sean. Just a nightmare if you have a special needs child who requires tons of Drs and specialists, Medications, equipment and surgeries.
That sums up Sean, despite he looks rather normal on the outside. It is those darn x-rays, MRI's and Barium studies that reveal who the REAL Sean is on the inside.
How does a person pay for all these things!?!?!??! INSURANCE! After the appeals and court appearances.(Just a side note-Sean's first hospital stay after he was born was 10wks in the NICU at the tune of $3M. Yes you read right!) So you can see why insurance is so important.
We had always had private insurance through my DH work. However, the ecomony was/is poor and DH lost jobs to cuts and whatever excuse they could find. SO with a severely chronic ill child, we sought out State/Federal Insurance for all of us. We needed it very badly. We applied, we were given it. Great. THey paid for everything even at times when they didn't want to. That was fine. They paid the bills. DH found a job-no health coverage at all, but we still had coverage because it was just under the cap. Fine. July of 2003 came. DH was given a raise. We were over and reported it. It was renewal time anyway. We were honest. WE lost full coverage, but had to do a share of costs each month more than DH earned. WHAT!?!?! That did't work, but found another State insurance for low income families and applied. They accepted us and the Nightmare began! All of a sudden they refused to pay for anything of Sean's because of a "Pre-existing Condition" and they didn't take "those kinds". All this is happening as Sean's health is failing. He is losing weight because no more nutritional supplement. We can't afford the $4, 000 a month just in supplement. We did have people offer to pay part of it for one month, but that was one month. They refused to pay for his reflux medications. He had pneumonia due aspiration of it into his already reflux damaged lungs. We fight and fight and file complaints.
Come around November as we are considering what to do for Sean, we are told we have "No Cost" medi-cal again. SO we try to find out what is going on. A computer program found we still qualified. Great! Let's switch programs, so Sean can get the help he needs. The state program refuses to let us out of their program despite hiring an attorney. THey won't the federal program take over. Oh, Because of Sean's birth defects/medical issues, he is suppose to already have no cost medi-cal for life! How come we were NEVER Told that?)!?! So update Sean is out of the State program and still not in the federal program. Because of his brothers and how we applied, they are in the same boat. What is done for one child, it is done for all siblings. Wild thing. Supposedly by today things will be fixed. Not counting on it.,
I am not sure if families with ADD/ADHD children or autism have the same problems with insurance issues-being state, federal or through an employer. More and more children with chronic illnesses/birth defects like Sean's are being denied or put through hoops for coverage. I know their main issues are the school districts. I have problems with them as well. He looks normal and acts normal under normal and controlled settings, but underneath the skin and blue eyes with the long eyelashes, it is hard to believe he is so messed up! People are shocked when they find out. He doesn't "look" special needs, so it is hard to imagine his being such. He gets sick just as easily as a Down Syndrome child. He has protential more retardation because of the failure to thrive or if he stops breathing due to reflux. His spine is not as stable as ours are. HE tires very easily.
Enough of my soapbox today. I just needed to vent and to give a glimpse of what is going on. We live on the phone to insurance people as well as Drs. We are Sean's best advocates. Too bad no one is listening or thinks we are capable of knowing what is going on in Sean's life or his care. I dislike resident drs because of that-but another time!
Good news! Sean had his g-tube pulled yesterday and a mickey button put in. we open it up, hook up a special tube which hooks up to the feeding pump. He wasn't too sure about losing the "Tube" as Sean calls it. He loves his tube and has accepted it as part of his body. SO he didn't want to part with it. He is happy about the button. it isn't in the way and he doesn't have to have it covered at preschool. He has more freedom! No one at school can pull on his tube! If were to pop open, nothing will happen as it is a one way valve-I forgot to tell his teachers this. I hope they don't panic if something were to happen.
Time to go. Pick up time for Sean and then my teenager, Paul who is doing finals and has half days this week.
Have a wonderful day and remember to take time to hug your children and let them know how special they are to you!
Shelly and Sean
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