Needsleep259’s Weblog

Please help us fund a transplant!

My husband is once again in need of a transplant – this time he is in end stage renal failure, caused by the anti-rejection medication they gave him for his first transplant in 2003, when he went into liver failure quite suddenly.  He has been on the wait list now for a year, and may have to wait another year, or two, until a donor is found. He goes to dialysis three times a week for four hours a day. And we wait, while we struggle.

Things are much different for us now. We have Gianna, our 6 year old special needs child we adopted at age 2, when we had no idea what was coming. We don’t have the insurance coverage that provided everything, even lodging and travel expenses.  And we know now how hard it was the first time. We’re older, more tired, with less income.

We both have Medicare because of our disabilities.  Being in the state of Georgia, the insurance companies aren’t required to offer gap insurance for those under 62. So many people, like us,  end up with only eighty percent coverage, unable to afford another option. What’s scary is how fast the bills add up. Dialysis is $67,000 a month, with a $900 copay. Yes, it really cost that to go three times a week.  Have a problem with a clot in the graft arm? That will be an ultrasound, and an angioplasty. A ten day hospitalization to have a central line put in for dialysis, a graft for future use,   labs, etc? Several thousand dollars in copays, and a bill every few days to remind you to pay. Not to mention the medications, protein shakes, and eating the healthiest of foods.  So we find that we have to ask for help. A lot of help. Let me tell you why…

My husband deserves to be in this world. My child needs her father and  I need my husband. My little girl has Fetal Alcohol Syndrome, ADHD, Sensory Processing Disorder, Reactive Attachment Disorder and Oppositional Defiant Disorder. She is hard to manage and is daddy’s girl.  I don’t think she would ever understand should something happen to him. Developmentally she is about 3 or4 now. We home school her, take tai chi as a family to help her regulate herself better, drive her to OT for her sensory work,  therapeutic horse riding, and spend every single day trying to avoid a meltdown, to give her a good childhood.  What we don’t do is go out to dinner, or the movies, or anything most people take for granted, because she cannot handle it, and because we can’t find someone understanding enough to watch her.  And that’s okay, because this child needs us.

So please help. Give what you can.  Any amount. Help me save my husband.  Save Gianna’s daddy.


I’m back

So much time has passed since I started this blog. So much has happened. My husband is in end stage renal failure, caused by the anti-rejection medication he was taking for his liver transplant.  The doctor called us Christmas Day to tell us, and the next day he was on the transplant unit. He is now on dialysis three times a week until a donor is found for transplant, which could be another year or longer. We had him on the wait list since we found out this would happen, and it’s been 300 days.

My daughter now has an alphabet soup of letters as a diagnosis for her issues. She has RAD, (reactive attachment disorder), FAS, (fetal alcohol syndrome), SPD, (sensory processing disorder), ODD/CD, (oppositional defiant disorder and conduct disorder, also known as disruptive behavior disorder), seriously, ADHD,  (attention deficit hyperactive disorder) and last, but oh so frustrating, encoparesis. She is six. Good grief.

I had my sixth surgery two months ago for a problem that never gets resolved. No more surgeries for me. The doctor recommends radiation therapy though I don’t have cancer. I don’t think so.

So my life is increasingly stressful. Good time to start blogging. At the very least, my family will make yours feel more normal. Hope you stick around.


Oops again: the tree part two
December 8, 2008, 8:57 pm
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Our tree trimming was put off by the cat getting caught in the garage door incident. Yes he was, and it was awful. I had gone out there to see if the door was down or not, and as soon as I opened the door I heard this terrible yowling. All I could see is the cats neck and head trapped by the door. As soon as I opened the garage door, he immediately began doing these strange gyrations and flips, before disappearing. We wanted to take him to the animal hospital, but catching him was not happening.

Now these doors are supposed to stop if someone enters when the door is engaged. We’ve tested it and I am not sure why it failed. The poor cat is so traumatized it won’t go near the garage. We weren’t really up for decorating after this, but we tried for Gia.

We wound about six strands of lights around the tree, only to forget to leave the plug handy. 🙂 Oops,  it was okay though because we managed to work it down to connect to our surge protector strip. Now it was time for the decoration, or the “ballies” as Gia calls them. I carefully unwrapped the large handblown blue favorite and went to put it high up, when my dear husband tells me to let him do it. Silly me, I hand it over and CRASH. Oops, he tells me , it slipped.

Why is it the ONE ornament out of so many to break is the most expensive? What are the odds? Anyway, we decided to save the rest of it for later. Much later. More to come……..we’ll get this tree trimmed yet.

oops, there goes the tree…
December 7, 2008, 12:32 am
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We got our  Christmas tree today. The first tree we saw was perfect- a six foot Frasier fir.  Not one to leave well enough alone, I had to go a bit bigger, so we grabbed another one, and drove home without mishap with it on our roof. My husband got out our tree stand, and as I dusted it off,  he went to get the tree. That’s when the trouble began….

We had cleared a corner of the living room next to the unused fireplace, which we won’t use till Gia is able to stay away from it, which may be years from now. We put the tree stand down and here he comes in with the tree, still in it’s netting, banging into every light fixture along the way. He then places it in the stand and steps back, telling me to just leave it for awhile.  Before I can say, “are you nuts, you didn’t tighten it “,  BAM, the tree starts to fall. And where does it go? It goes right for the mantel, taking out decorations and the fire implement stand, which all crash down on the wood floor, as we all jump back.

Damage? Oh yes! We had a nick in the floor, a broken globe from a stocking holder with water and glass everywhere, a headless marching soldier, and. worse of all, the wood trim around the bottom of the fireplace that the floor installers had put in ripped away. Yet not one tree needle was seen, so I would say the tree is a fresh one. You can tell by the sap on the drape where SOMEBODY leaned the tree after it fell.

After we cleaned up the mess, told our little one what had happened several times, because she always wants things defined, we set the tree up again AND TIGHTENED THE STAND.  That’s when Gia decided it needed a drink and proceeded to pour her orange juice on the tree. Oh Christmas tree……Tomorrow we decorate it. Let’s hope it goes better……….

Why we don’t eat out…
November 22, 2008, 4:01 pm
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We went to a new pizza place that bragged about ‘New York Style’ and sloshed our way out afterwards. No, we weren’t drunk, just soaking wet and humiliated – at least I was. At least the pizza was good for a change, this being the first place we found that earned their right to brag, with so many others  apparently never having tasted NY pizza before. But let me explain just why we don’t eat out.

We were on our way to the park and decided to eat in for a change. We usually stick to the kind of food you can have in the car, and pizza is difficult, so in we go. We were pleased to see other children there, which was a lapse with reality, because while the pizza may have been New Yorkish, the children were definitely raised up in the more genteel South, which meant they were well mannered. Our Gia can be well mannered too, though only when she is calm and well focused. Once we hit our seats, her brain got chaotic and we had our hands full. Not full of pizza either, since it took an unreal amount of time to make it to our booth.

First, Gia wanted to play the change parent game, which is the one where she sees how many times she can scoot across the table to get to the other parent. Strike one. Then there was the knock the fake ivy dangling behind Mommy around game, which was strike two. Strike three came up rapidly when she gave a blood curdling scream because we put a stop to the first two games. And this was just the warm-up for what was to come.

We finally get the pizza, ( for her we had ordered it to be lukewarm and cut up), with the promise that ours would be along soon. I swear my finger almost blistered from the burn that occurred when I touched a piece. When ours arrived, you would think the heat of them would melt the table. I then took a sip of soda and found it to be flat, so we asked for another. The server returns with it and Gia in her eagerness to get a drink, ignores the no, wait a minute instruction, and pushes the extra large glass over. All over Daddy, who is definitely not amused. A nice young man comes over and cleans it all up, brings a third drink, which daddy, in his eagerness to get it, pushes over. All over Mommy, who is so embarrassed at this point, and wondering if people will ever stop staring. No, they keep right on looking, with all their well behaved children, looking kind of smug if you ask me.

We take a few bites, while Gia knocks hers on the floor. At this point, we tip the server, the cleanup kid and leave, with every eye in the place on us. My pants are drenched, front, back and down the legs. My shirt and coat are also soaked. My husbands shirt,sweatshirt, and pants are wet. Amazing how far a glass or two of soda can spread. In all this we almost overlook how much Gia needs reassurance, which becomes apparent when she starts repeating over and over that it’s all her fault, which she most likely picked up from one of her beloved videos. We manage to calm her and make it seem that skipping the park was okay because Mommy and Daddy were too wet to go, then we head home. As we change our clothes, we remind ourselves that there are perfectly good reasons why we don’t eat out, and we cringe a little thinking about the upcoming holiday dinner we are celebrating elsewhere. Uh-oh. Well, there is one thing I have contol over – note to self: keep beverages out of reach of husband and child………..

An Ordinary Day
November 9, 2008, 12:45 am
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Today was a good day. It was a day not unlike others – ordinary, where we didn’t do much, but things seemed to flow so well. I got to sleep in until 6:45, which is late for Gia. We got into that, “I’m not wet” debate we have been having recently, then cranked up the heat as we went to fix her warm chocolate milk and Mommys’ hazelnut coffee. She ground the beans with my help and then we put a movie in, that she selected herself – Toy Story. Once settled as close as she could get to the tv without actually entering the set, she let me take her diaper off and put on “Fancy Pants”. In this case, fancy pants are Tinkerbell underwear. These were followed by Sesame Street underwear 25 minutes later, (oops), which were then followed by a Huggies pullup an hour after that, because today potty training wasn’t happening, even with the promise of a M&M reward.

At 8 I threw an apple strudel in the oven. Lest you think I’m that talented, this one came to us when a neighbor hit us up for a fundraiser. Maybe if it cost less I would have enjoyed it more, but it just didn”t live up to the ten dollar price tag. I was expecting so much more. Gia wouldn’t eat it at all.

Once dressed and outside, who do we see but Santa. For real!! There is a farm behind our house, and there was Santa, visible beyond the field. He was in a big, elaborate white carriage, being pulled by a humungous horse.  They made their way over to us, Santa and the driver, a Sam Elliot look alike, not that I  noticed though. 😉 And when did I start noticing older men? I guess the same time I realized the President elect was younger than me. But I digress, ahem…..

We made our way over for a carriage ride at their invite, only to find it cost $10. Of course we didn’t have any cash on us, so my dh drove off to the local ATM while we stayed and stared at Santa – at least Gia was. 🙂 So we eventually forked over the cash and and had our ride. Best of all, now that Santa lives behind us and will be giving carriage rides to kids, we have a great incentive for good behavior in this house, because after all, Santa just may be passing by and watching!

So what else did we do? Stopped off at a neighbors and Gia jumped on their trampoline. We kicked a ball around our yard. We went for a walk with Gia toddling ahead. We went to the supermarket where I saw my BIL frantically beckoning his wife to stop yakking and fly out of the store. Guess he spotted me. My BIL thinks we are totally crazy for adopting Gia and him and his wife totally cut us off. Their loss, but I have to admit I don’t miss them, and we got a kick out of the fact they avoided us. After we got home Gia and her daddy went to feed Wilbur the mule in Santas yard. Wilbur races over to the fence when he sees us, knowing we’re good for a carrot and the occasional apple.  I made taco pie while they were inside, then they came in and it was time for the next show, ‘The Wizard of Oz’, another favorite. Now don’t think the child watches tv constantly – she rarely sees the whole movie, having way too much to attend to. Like coloring and dragging every toy she owns into the living room, bathrooms, and kitchen. Or hiding her blue sneaker that has been AWOL for three days.

We finish eating and do the cleanup dance, followed by the bath ritual, and then it’s bundle up and go outdoors for the moon patrol, then read some stories, right before going online to see Andrea Bocelli sing  good night to Elmo. We clean up the worse of the Gia inspired messes before it’s time for bed. But first we do shadow creatures with a flashlight on the ceiling, and say our good nights. After dh and Gia fall sleep, I sneak out to the kitchen to make some popcorn, and then settle down to read the Sunday paper, which we always buy on Saturday. I read the whole thing, and then sit down here and type away, instead of getting some extra sleep, because I would rather have this me time, and be tired tomorrow, then get some rest, and feel like I have no time to myself. All in all, an ordinary day, where nothing really happened, except we all hung out and had fun. These are the good days, that we can’t take for granted. I’m going to go to sleep now. I hope tomorrow is another ordinary day. Good night!

The Leopard Princess and The Happy Hooker
November 6, 2008, 4:52 pm
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The major stores would have us think Christmas was immediately following Halloween, judging by the Christmas music playing as I passed the Halloween clearance sales. So if I’m a little late blogging about Halloween, blame it on being distracted by Santa. 🙂 We had a good Halloween here in Georgia – mostly treats.

My little one was dressed as the Leopard Princess. What, you say you never heard of that? Well, don’t tell Gia because she was a beauty in her little spotted one piece with puffy sleeves and tutu. She had a leopard headband we kept losing, with little cat ears. She had the “trick or treat” down pat and carried her little Elmo bucket, because Elmo is always her first love. We did offer her an Elmo costume, but you would have thought we were trying to give her a timeout from her reaction. Ok, no Elmo.

All day Gia eagerly awaited the moment to beg candy. At four we couldn’t hold her back anymore, so off we go with the wagon around the corner. She rings the first doorbell, then walks right in as if she owns the place. The trick was getting her to leave. We finally got her to go to meet her biological grandmother. Grandma had dressed for the occasion. Sorta. You could say she half dressed, showing up in a tight silk gown missing it’s top, or so one would think. She had a long blond wig and 3 inch stilettos. Umm, is it uncharitable of me to think trick, not treat? Sorry, but put her on a corner and she would be hauled off to jail. Still, she showed up and I’m not being nice.  Anyway, Grandma can move in those heels and her “girls” as she puts it, didn’t fall out hardly at all.

We found out no one goes out till dark for Halloween. We were done before the first round of kids hit our door. And kept on hitting it. All in all, we had over 60 kids come. I shut it down at 9, after getting some  kids that were old enough to drive themselves around. I learned Gia, at two, had better manners than half the kids that ran off without a thank you, which was a proud parent moment for me. Some parents let their young ones go out alone, which to me was scarier than anything I saw that night, with the exception of Grandma. I also learned that I still care what people think, embarrassed when we met our neighbors for the first time.  Next year Grandma can come with us again, but this time I’ll dress up. Think camouflage.