Tater is loving the scooting. His therapists aren't so crazy about it because as far as developmental milestones go, scooting isn't really one of them. They're extremely happy he is moving but scooting doesn't develop any other skills (other than we can treat nasty rug burn and knock it out in a day-shouldn't that count?). Right now, he's scooting back and forth between a toy and the front door. He will sit at the front door and wave at people who are walking by. We and the neighbors think it's pretty much the cutest thing.
Toser is not loving life right now. We got really lax about bedtimes this summer and it had gotten out of hand (um, 10:00pm?!) so we're doing bedtime boot camp this week. No naps means he's actually tired at a decent hour but means the afternoons have been hell for everyone. I hope after this week we can start naps again and still get to bed on time. He was upstairs just now and was too quiet so I went to check. He was in bed, lights out, asleep. My poor child is having to sneak naps. Meanwhile, I'm sneaking wine.
CC and LJ came over today so CC could learn Tater's care and vent settings (it helps that she's a RN with many degrees and is very quick in the picking up of medical things). She insists someone else should know, just in case. Isn't she smart and pretty? And I got to hold LJ so I get 2 bonuses out of the teaching.
We're all good here. Tater's off oxygen this week but that could change. Mr. Awesome's work has calmed down and he isn't so preoccupied all the time. I had a breakdown yesterday about something very inconsequential but a good dinner with great friends was what I needed. I laughed so hard (KWu, you're hilarious) and was refreshed today. Everything seems to be even keel this week other than the naps. I hope it lasts!
Thursday, September 25, 2008
Thursday, September 18, 2008
Adventure on the High Seas
What a trip. We ended up going to the beach and had a blast with Manny and Hunter. The boys especially since they were spoiled rotten with attention and play-dough. Well, we watched Ike and when it headed to TX, we decided to go on to the beach for a couple of days. We didn't think the weather would be that bad so far away from the hurricane. Wrong. We got to the beach house on Fort Morgan Friday night after dark. The storm surge was covering the road and we couldn't find the driveway in the water so we parked in the road. Everyone was looking to me to make the decision on staying so I said sure, let's have an adventure. Well, the adventurous part was wading in water with all of Tater's vent supplies. I thought I was going to lose my mind watchingHunter carrying the Cough Assist through the water. The power kept flashing and stuff kept alarming but we made it through the night with no catastrophes. I was a bit of a nervous wreck. Yes, looking back, I was pretty stupid for deciding to stay not knowing what could happen.
BUT! We woke up Saturday morning with an old shipwreck on the beach in front of us! The winds blew most of the sand off of it during the night and no one really knows how long it had been buried. It's a 150ft steam ship that was burned to the hull. It's so cool. We heard numerous stories about its origin- my favorite is that it was a Rum Runner from the Prohibition. A couple of the local news stations covered it and we watched hundreds of people come see it.
BUT! We woke up Saturday morning with an old shipwreck on the beach in front of us! The winds blew most of the sand off of it during the night and no one really knows how long it had been buried. It's a 150ft steam ship that was burned to the hull. It's so cool. We heard numerous stories about its origin- my favorite is that it was a Rum Runner from the Prohibition. A couple of the local news stations covered it and we watched hundreds of people come see it.
Wednesday, September 10, 2008
Rhapsody on a Theme of Medical Insurance
Parents of medically fragile children can not catch a break. But, you say, there are resources out there for ill children and their families. Yes, there are resources but you have to do a song and a dance and sell your first born and fight and cry and piss people off and prove you need the help before anything even begins to happen. I am so sick of dealing with this myself (but knowing that somehow we'll make it) and then hearing about someone who probably won't make it through the process to get help before they have to file for bankruptcy or worse, lose their child.
I just got off the phone with a therapist who has seen Tater a couple of times. She was asking for guidance FROM ME. One of her clients' family is having a horrible time getting nursing help for their very, very sick child. They have to be with their child 24/7 and can't leave her side at all. The mom can't go grocery shopping, she can't sleep, she's exhausted and is at her wits end. Medicaid won't pay for nursing because the child is less than 1 year old. How in the world is that justification for no nursing?! Why should this mom go insane because her daughter hasn't become one yet? Her daughter is sick, she needs a break, but because someone somewhere decided this should be a criteria to getting care, she can't get the help she needs and deserves.
I have been on the phone all day with various entities on a theme of Medicaid. I should compose a song. I'm trying to figure out a medical bill that we shouldn't have gotten but it looks like we may have to pay all the same. It's not chump change that I'm arguing about either. It makes me sick to think that we could be paying all of Tater's medical bills out of pocket in the not too distant future.
You see, our private insurance has a Major Medical cap that Tater will be getting close to sooner than we can fathom. It's very likely that he will not qualify for another private insurance and so our only recourse for him will be Medicaid. He currently has Medicaid because of a loophole in a Federal program to-not-be-named. The Medicaid he is on is only in effect for a year from the date of his discharge from the hospital in April 08. We went through this particular song and dance thinking that we could get Tater on Medicaid through a Waiver program before April 09. We have to go through a waiver program because Medicaid is essentially an income-based program and Tater doesn't qualify based on Mr. Awesome's income. Each state has a waiver program (sometimes called a Katie Beckett Waiver) for elderly and disabled residents that isn't based on income but as you can imagine, the wait list for the waiver programs is crazy long and the wait can be up to 6 years in some states before a person on the list gets to the top and receives a slot for Medicaid. Tater is currently on 2 waiting lists and neither one can tell me when he may get moved to the top. It could happen that Tater loses his current Medicaid at the same time he loses our private insurance.
And it's not only kids who are affected by the mess that is America's health care. A close family friend has had to continue to work throughout chemo and radiation treatments so that she can have insurance to pay for the chemo and radiation treatments. She's working hard, she's supporting herself and she still can't get any kind of help. That's just not fair or humane. Can you imagine having to work through the nausea of chemo? The sad truth is that many of you probably do.
Whatever your political beliefs are, it remains a very true fact that the health care system in this country sucks at best. The mess the health care system has become is not the fault of any one group but every group involved in the health care process -politicians, insurance companies, doctors, patients, etc., - should feel a responsibility to the health of themselves and their loved ones and try to fix it.
I just got off the phone with a therapist who has seen Tater a couple of times. She was asking for guidance FROM ME. One of her clients' family is having a horrible time getting nursing help for their very, very sick child. They have to be with their child 24/7 and can't leave her side at all. The mom can't go grocery shopping, she can't sleep, she's exhausted and is at her wits end. Medicaid won't pay for nursing because the child is less than 1 year old. How in the world is that justification for no nursing?! Why should this mom go insane because her daughter hasn't become one yet? Her daughter is sick, she needs a break, but because someone somewhere decided this should be a criteria to getting care, she can't get the help she needs and deserves.
I have been on the phone all day with various entities on a theme of Medicaid. I should compose a song. I'm trying to figure out a medical bill that we shouldn't have gotten but it looks like we may have to pay all the same. It's not chump change that I'm arguing about either. It makes me sick to think that we could be paying all of Tater's medical bills out of pocket in the not too distant future.
You see, our private insurance has a Major Medical cap that Tater will be getting close to sooner than we can fathom. It's very likely that he will not qualify for another private insurance and so our only recourse for him will be Medicaid. He currently has Medicaid because of a loophole in a Federal program to-not-be-named. The Medicaid he is on is only in effect for a year from the date of his discharge from the hospital in April 08. We went through this particular song and dance thinking that we could get Tater on Medicaid through a Waiver program before April 09. We have to go through a waiver program because Medicaid is essentially an income-based program and Tater doesn't qualify based on Mr. Awesome's income. Each state has a waiver program (sometimes called a Katie Beckett Waiver) for elderly and disabled residents that isn't based on income but as you can imagine, the wait list for the waiver programs is crazy long and the wait can be up to 6 years in some states before a person on the list gets to the top and receives a slot for Medicaid. Tater is currently on 2 waiting lists and neither one can tell me when he may get moved to the top. It could happen that Tater loses his current Medicaid at the same time he loses our private insurance.
And it's not only kids who are affected by the mess that is America's health care. A close family friend has had to continue to work throughout chemo and radiation treatments so that she can have insurance to pay for the chemo and radiation treatments. She's working hard, she's supporting herself and she still can't get any kind of help. That's just not fair or humane. Can you imagine having to work through the nausea of chemo? The sad truth is that many of you probably do.
Whatever your political beliefs are, it remains a very true fact that the health care system in this country sucks at best. The mess the health care system has become is not the fault of any one group but every group involved in the health care process -politicians, insurance companies, doctors, patients, etc., - should feel a responsibility to the health of themselves and their loved ones and try to fix it.
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