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.
Saturday, September 6, 2008
Oh, dedicated readers...
Y'all weren't waiting for an update were you?
Tater's been dealing with a snotty nose and has needed a little oxygen boost while asleep lately but he's seems fine other than that. We're not suctioning him a ton so it's just really weird. We're keeping an eye on it and will update if the snot turns into anything more. In other news, I've seem to have developed allergies in my old age. Allergies are for the birds. Who knows what I'm allergic to but man it's a doozy.
Tater's nurse has been in Italy for the last 2 weeks and returns on the 15th. Her father passed away unexpectedly and she had to rush home. Poor Pat. She's so caring and loving of Tater and we hate that she's having to go through this. Although, the last 2 weeks have given me a greater appreciation of how much she helps us. I've enjoyed having the boys to myself but nothing has gotten done around the house and I know Mr. Awesome is getting tired of stopping by the store on his way home from work. We are in desperate need of a full-on grocery run around here.
Of course since Pat has been gone, work has ramped up for Mr. Awesome and he's super stressed. He's probably going to be working next weekend so I was thinking about heading to the beach with Coco and Papa to see Manny and Hunter but it looks like a hurricane may be headed that way so we're exploring vacation options away from storms. Manny and I are pushing for a place with a masseuse. Manny is preggers and could use one so I will be her ally in the cause for purely unselfish reasons.
Toser is loving his new school. I put him in one that came highly recommended and is a bit closer to our house than his old one. Turns out that Mr. Awesome and his sisters went to the exact same preschool. How funny is that? He's in 2 days a week but would love to go 5. He seems so happy lately and he isn't being too much of a 3 year-old.
We've had a ton of visitors lately. Leeda and her crew were here the 2nd week in August. Kajja came later that week and she, Leeda and Mr. Awesome did the triathlon. I did the bike portion as part of a relay team with some of my Mountain Mamas. As I've told some people, my greatest accomplishment was wearing spandex in public. We all finished (some only a little faster than others) and we had a blast. While everyone was here, we celebrated Rockstar's first birthday with family friends. Then Kajja came back this week for a business trip and Gigi came for a couple of days. Toser and Tater have been spoiled rotten and have loved every minute.
Tater is scooting everywhere now. See video below.... He was getting permanent rug burn on his bottom from the scooting but keeping him in pants (not shorts) is helping that. He's starting to do a little more in therapy with pushing up on his arms while on all-fours and he's bearing a little more weight on his legs while "standing." He's still a booger and won't do anything he perceives he can't do but he seems to want to do a little more lately so we're very happy.
Toser playing in the rain (he loves this):
Tater's been dealing with a snotty nose and has needed a little oxygen boost while asleep lately but he's seems fine other than that. We're not suctioning him a ton so it's just really weird. We're keeping an eye on it and will update if the snot turns into anything more. In other news, I've seem to have developed allergies in my old age. Allergies are for the birds. Who knows what I'm allergic to but man it's a doozy.
Tater's nurse has been in Italy for the last 2 weeks and returns on the 15th. Her father passed away unexpectedly and she had to rush home. Poor Pat. She's so caring and loving of Tater and we hate that she's having to go through this. Although, the last 2 weeks have given me a greater appreciation of how much she helps us. I've enjoyed having the boys to myself but nothing has gotten done around the house and I know Mr. Awesome is getting tired of stopping by the store on his way home from work. We are in desperate need of a full-on grocery run around here.
Of course since Pat has been gone, work has ramped up for Mr. Awesome and he's super stressed. He's probably going to be working next weekend so I was thinking about heading to the beach with Coco and Papa to see Manny and Hunter but it looks like a hurricane may be headed that way so we're exploring vacation options away from storms. Manny and I are pushing for a place with a masseuse. Manny is preggers and could use one so I will be her ally in the cause for purely unselfish reasons.
Toser is loving his new school. I put him in one that came highly recommended and is a bit closer to our house than his old one. Turns out that Mr. Awesome and his sisters went to the exact same preschool. How funny is that? He's in 2 days a week but would love to go 5. He seems so happy lately and he isn't being too much of a 3 year-old.
We've had a ton of visitors lately. Leeda and her crew were here the 2nd week in August. Kajja came later that week and she, Leeda and Mr. Awesome did the triathlon. I did the bike portion as part of a relay team with some of my Mountain Mamas. As I've told some people, my greatest accomplishment was wearing spandex in public. We all finished (some only a little faster than others) and we had a blast. While everyone was here, we celebrated Rockstar's first birthday with family friends. Then Kajja came back this week for a business trip and Gigi came for a couple of days. Toser and Tater have been spoiled rotten and have loved every minute.
Tater is scooting everywhere now. See video below.... He was getting permanent rug burn on his bottom from the scooting but keeping him in pants (not shorts) is helping that. He's starting to do a little more in therapy with pushing up on his arms while on all-fours and he's bearing a little more weight on his legs while "standing." He's still a booger and won't do anything he perceives he can't do but he seems to want to do a little more lately so we're very happy.
Toser playing in the rain (he loves this):
Video of Tater scooting (sorry the lighting is so bad):
and dancing to The Lost Trailers new CD Holler Back:
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