Okay, here we go. Again. Khaki is fired up about something and you can all ignore her. Um, ignore me. I've been on Facebook too much.
There is a BBC show that dared to hire [gasp] a woman missing a part of her arm to host a children's show. Can you believe it?! Can you believe that they think it is important enough to expose children to all kinds of different-looking people? Can you believe they think it may be a good idea to start this kind of enlightenment at an early age?! Sarcasm over... Can you believe there are parents writing into the show saying they're afraid the host will "frighten the children?"
I cannot express enough how this sickens me. Or how stupid the British press is for referring to this woman as "one armed." She very obviously has both of her arms, it's just that one of those arms doesn't have a hand. It would be more appropriate to say this woman is lacking one of her hands.
Why are they concerned with this? They being the press, the parents, whomever. I've never seen this show. It may very well be the worst children's show ever. But to degrade it because the host only has one hand?! Let's go after those really bad children's' shows like Lazy Town and Yo! Gabba! Gabba! Those shows are horrid in that they are just dumb. Those shows should be raising the parental ire, not a show trying to expose children to different abilities.
I tell you what. Let these people who are afraid a woman with one hand will frighten children come to my house. I'll let them see my child hooked up to wires and tubes and with a stupid HOLE IN HIS NECK. And Tater looks normal compared to many other children who are depedent on medical technology to keep them alive. My God. People can be so stupid.
Thursday, February 26, 2009
Monday, February 23, 2009
Passive Logistics
Apparently, I need a life...
We live next to a State Park on a Mountain (1600ft is considered a Mountain in Alabama), as in the State Park is less than 100 feet from our back deck. We love it here. Will not ever move if we have anything to do with it. LOVE IT!
There used to be 2 roads to get to the park but now there's only one because the other is eroding into the mountainside and a lot of people have very heated opinions about whether that road should be reopened or not. I have no huge opinion about reopening the road because I can see pros and cons to both sides (yes, I see how a lack of opinion on my part is surprising to you). Today, though, I hate that there's only one road because they're doing drainage work on that road and State Park traffic is being rerouted down our street for 30 days.
These people (let's call them lowlanders) are not good drivers. They're too fast, they drive stinky cars and they are making my quiet little street not-so-quiet. You know I was on the phone first thing this morning. My reputation must have preceded me because I was transferred and put on hold and finally got someone's voicemail. Mr. A called and was put straight through to the appropriate person.
I don't know what we're trying to accomplish but we don't like the idea of all this fast traffic and our little boys who like to ride their tricycles on walks. If they can't put in temporary speed bumps to slow these people down, I have a plan: I'm parking our old car that we've been needing to sell in the street. People will have to slow down to go around the car and if someone happens to hit it, they get to buy it from us, 2 birds with one stone and all that jazz! I'm such a good problem solver! I think I'll hire myself out as a Passive Logistics Consultant. If you don't want to directly handle an issue you have, I can come up with the most convoluted plan and maybe you'll get extra benefits. Call me.
We live next to a State Park on a Mountain (1600ft is considered a Mountain in Alabama), as in the State Park is less than 100 feet from our back deck. We love it here. Will not ever move if we have anything to do with it. LOVE IT!
There used to be 2 roads to get to the park but now there's only one because the other is eroding into the mountainside and a lot of people have very heated opinions about whether that road should be reopened or not. I have no huge opinion about reopening the road because I can see pros and cons to both sides (yes, I see how a lack of opinion on my part is surprising to you). Today, though, I hate that there's only one road because they're doing drainage work on that road and State Park traffic is being rerouted down our street for 30 days.
These people (let's call them lowlanders) are not good drivers. They're too fast, they drive stinky cars and they are making my quiet little street not-so-quiet. You know I was on the phone first thing this morning. My reputation must have preceded me because I was transferred and put on hold and finally got someone's voicemail. Mr. A called and was put straight through to the appropriate person.
I don't know what we're trying to accomplish but we don't like the idea of all this fast traffic and our little boys who like to ride their tricycles on walks. If they can't put in temporary speed bumps to slow these people down, I have a plan: I'm parking our old car that we've been needing to sell in the street. People will have to slow down to go around the car and if someone happens to hit it, they get to buy it from us, 2 birds with one stone and all that jazz! I'm such a good problem solver! I think I'll hire myself out as a Passive Logistics Consultant. If you don't want to directly handle an issue you have, I can come up with the most convoluted plan and maybe you'll get extra benefits. Call me.
Thursday, February 19, 2009
Nothing for Free (or The "What Else is New, Please Get a New Bone, Woman" Rant)
I have discovered that the price for receiving government services, federal, state, local, paid, free or otherwise, is the sanity of those who must deal with the government agency providing those services. My God. The paperwork. The details. The hoops. The flame-breathing dragons. They will zap your energy and kill your soul. And that's just been this morning. Y'all it has been a MORNING.
And funnily, not even related to this morning: Yesterday, we got a fancy, glossy flyer saying I should call and thank my Congressman who "fought to provide 11 million children with health care coverage through the Children's Health Insurance Program (CHIP)." Each state runs its own CHIP. As it does its own Medicaid Program. Do I need to tell you how Alabama has messed up Medicaid? It has taken Tater a year to get Medicaid through Alabama's Elderly and Disabled Waiver program and he is considered to be a technology dependent child. Can you imagine how hard it will be for a normal child to get insurance?! From Alabama's CHIP, All Kids', website: "Eligibility for ALL Kids is determined, in part, by family size and income." Okay, THAT tells me a lot.
Do you think I am calling my Congressman to thank him for this program? Hell no. I am writing him a lengthy letter thanking him for helping out a lot of children, sure, but also telling him about the number of small, middle class families who are either left out of such programs or made to jump through such hoops to get them that it would be easier to just outright lose their jobs so they qualify for Medicaid based on income. I swear it shouldn’t be this hard to get health coverage for our children. I say this again and again and I know I’m a broken record, but! I have a college degree, I have taken graduate business classes in a fairly difficult program, I am considered to be well read and quick on the uptake, and if I am having a hard time dealing with this crap, then how in the world is someone less fortunate than I am going to be able to it deal with it?!
Tater now has real Medicaid (as opposed to loophole Medicaid) as secondary insurance to his private insurance, on which he is quickly approaching the lifetime cap for benefits. If Tater continues to do as well as he has been and is able to get rid of his trach, he could lose Medicaid because he no longer qualifies based on medical necessity. What happens then? I don’t know many families who can afford to pay outright for medical insurance. We’re already cutting out many of our humble luxuries to make ends meet now. We save and we don’t live extravagantly. We pay our taxes and we’re good people. And yet. Our wonderful, booger of a son may very well be left without medical insurance if current policies aren’t changed. I’m still trying to figure out what my role will be in making sure this doesn’t happen to him or the many other children in his place. You can bet there will be a fight. And that I'm taking freshman comp over so I stop writing in run-on sentences.
And funnily, not even related to this morning: Yesterday, we got a fancy, glossy flyer saying I should call and thank my Congressman who "fought to provide 11 million children with health care coverage through the Children's Health Insurance Program (CHIP)." Each state runs its own CHIP. As it does its own Medicaid Program. Do I need to tell you how Alabama has messed up Medicaid? It has taken Tater a year to get Medicaid through Alabama's Elderly and Disabled Waiver program and he is considered to be a technology dependent child. Can you imagine how hard it will be for a normal child to get insurance?! From Alabama's CHIP, All Kids', website: "Eligibility for ALL Kids is determined, in part, by family size and income." Okay, THAT tells me a lot.
Do you think I am calling my Congressman to thank him for this program? Hell no. I am writing him a lengthy letter thanking him for helping out a lot of children, sure, but also telling him about the number of small, middle class families who are either left out of such programs or made to jump through such hoops to get them that it would be easier to just outright lose their jobs so they qualify for Medicaid based on income. I swear it shouldn’t be this hard to get health coverage for our children. I say this again and again and I know I’m a broken record, but! I have a college degree, I have taken graduate business classes in a fairly difficult program, I am considered to be well read and quick on the uptake, and if I am having a hard time dealing with this crap, then how in the world is someone less fortunate than I am going to be able to it deal with it?!
Tater now has real Medicaid (as opposed to loophole Medicaid) as secondary insurance to his private insurance, on which he is quickly approaching the lifetime cap for benefits. If Tater continues to do as well as he has been and is able to get rid of his trach, he could lose Medicaid because he no longer qualifies based on medical necessity. What happens then? I don’t know many families who can afford to pay outright for medical insurance. We’re already cutting out many of our humble luxuries to make ends meet now. We save and we don’t live extravagantly. We pay our taxes and we’re good people. And yet. Our wonderful, booger of a son may very well be left without medical insurance if current policies aren’t changed. I’m still trying to figure out what my role will be in making sure this doesn’t happen to him or the many other children in his place. You can bet there will be a fight. And that I'm taking freshman comp over so I stop writing in run-on sentences.
Monday, February 16, 2009
One less piece of equipment
It's a big one and we actually still have to have it around at all times but at least Tater doesn't have to be hooked up to it....
Tater has been cleared to stay off the vent during waking hours! He only has to use the vent when he's asleep or sick! WOOHOO!!!! YIPPEEE!! He had Vent Clinc last week and the doc said Tater was doing so well, to go for it. And he switched Tater to an inhaled steroid instead of the steroid we were giving him through a nebulizer and bedtime is super easy and quick, well easier and quicker than it was. Everyone was pleasantly surprised at how big he's gotten and this is the first doctor's visit ever where his weight wasn't a concern and his feeds weren't changed. The kid who was labeled "failure to thrive" when he was an infant is now taller than 90% of boys his age and weighs more than 50% of kids his age. The child is big. He's actually taller than Toser was at this age-weighs a bit less, but he's taller. We thought Toser was huge. We grow 'em big here on the Mountain.
Never have we left an appointment feeling hopeful and giddy. We are definitely feeling guardedly hopeful. I just can't let that little bit of guard down but at least there's hope attached to it now.
Monday, February 9, 2009
Tater Crawling!!
He's trying!
And please excuse the lack of clothing on the Toser. He's currently on sabbatical from wearing garments other than undies.
Tuesday, February 3, 2009
Crawling
Tater is crawling! At 22 months, the child decided to crawl. All by himself. We had moved on to working on walking so weren't focusing much on him being in the "quad position," or hands and knees. Two weeks ago he started getting on all fours and rocking back and forth. Last week decided to coordinate arms and legs and go! Of course he won't do it when I try to record him. It's a very slow, determined crawl and he doesn't make it very far when he does go but this is a great milestone for him. We never expected him to crawl because the tone in his arms is so low. His legs are a little better off so the doctors were always more optimistic about walking and said crawling could be skipped. Tater decided otherwise.
Tater's underlying condition, the one that is caused by some unknown disorder and is the cause for many of his other, secondary issues, is low muscle tone, or hypotonia. He has all of muscles and can use them normally, but for whatever reason, there is a disconnect between his brain signals and those muscles. A normal muscle will retract when an outside force (gravity, another person) pulls against it. Tater's muscles don't retract immediately, if at all. He's very floppy. He looks like any other kid but if you hold him, you can tell he's not right. It's kind of like the opposite of someone having very toned arms. If they're toned, arm muscles are always engaged even if they're not doing an activity. Tater's muscles are hardly ever engaged. He's gotten stronger these last few months but strength doesn't matter much when the muscles aren't working properly in the first place.
All that to say any milestone like crawling is more than HUGE. I'm very proud of the little booger. The little booger who is constantly getting in trouble for hitting Toser. I guess you can't get one normal without getting them all.
And about the vague surgery coming up. We'll schedule that in April and it will probably happen in May so we have time to prepare. I'm grateful his doctor was willing to wait until RSV and flu season are over to do the surgery.
In addition to the crawling, we're all doing well here. Sicknesses are abating and we seem to be in a somewhat normal place. Of course, now that I said that, some ball is going to drop. We'll just enjoy life until it does.
Tater's underlying condition, the one that is caused by some unknown disorder and is the cause for many of his other, secondary issues, is low muscle tone, or hypotonia. He has all of muscles and can use them normally, but for whatever reason, there is a disconnect between his brain signals and those muscles. A normal muscle will retract when an outside force (gravity, another person) pulls against it. Tater's muscles don't retract immediately, if at all. He's very floppy. He looks like any other kid but if you hold him, you can tell he's not right. It's kind of like the opposite of someone having very toned arms. If they're toned, arm muscles are always engaged even if they're not doing an activity. Tater's muscles are hardly ever engaged. He's gotten stronger these last few months but strength doesn't matter much when the muscles aren't working properly in the first place.
All that to say any milestone like crawling is more than HUGE. I'm very proud of the little booger. The little booger who is constantly getting in trouble for hitting Toser. I guess you can't get one normal without getting them all.
And about the vague surgery coming up. We'll schedule that in April and it will probably happen in May so we have time to prepare. I'm grateful his doctor was willing to wait until RSV and flu season are over to do the surgery.
In addition to the crawling, we're all doing well here. Sicknesses are abating and we seem to be in a somewhat normal place. Of course, now that I said that, some ball is going to drop. We'll just enjoy life until it does.
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