Monday, December 31, 2007

A Recap of 2007, Now With Pictures!

Jan 2007-, I swear I must be stuck in like Groundhog Day because you know what I was complaining about last Jan? Seizures, Little Man's foulness during the Christmas vacation and Little Man's weight loss. The year is ending as it began. This year, instead of JJ's seizures though, we are back to dealing with the boy's seizures again. Here is hoping that 2008 takes care of the seizure thing and the weight thing! The behavior, well, you can't have everything.
My Pea of course is sprinkled here and there!


Feb- The biggest news was my dreadful case of anemia. I have been such a good girl the last 10 months with my iron, and it hasn't been a problem since! Little Man weighs the same now has he did then. Lots of appreciation for my beloved Bald Man in Feb. I read a couple of dreams I had that I would NOT have remembered if I hadn't blogged them. I am really glad I did. I received a happy package from Bombadee as a prize for winning a contest!


March- Had Little Man scaring the crap out of us by getting his little self lost at the park on my watch no less! For me there was a new haircut and the surprise arrival of Pygmy Child for the wedding prep!

April- Was all about the wedding of course!!

Also a trip to Doolittleville and my cherry popping trip to Washington D.C. It was great! Don't forget to check out the Peep Show Redzils, Eliza and I made while I was there!

May- Had us anxiously awaiting the arrival of spring

and our new grand daughter!

We adopted Fluffy, the Kitten Formerly Known as Justin and enjoyed the antics of Meeko and kitten.

June- was a BIG month, with the arrival of our sweet, sweet, June Bug!

I also did some blogging for LBGT families and my poor lil van got smushed up in the parking lot! Tangled Me got rated R for the excessive use of the word "poop". Who knew? My life is R rated!

July- Our June Bug grew in body and spirit

Princess won a singing contest and I got the most comments ever when I blogged about the vileness of my daily life.


I got to meet the ever adorable and thinks she is so bad-butt, Cupcake in a fast trip to Doolittleville. I LURVE me some Cupcake, she rocks the house. In spite of her foul mouth on her blog, she is actually so incredibly sweet and tenderhearted.

August-brought a trip to the Rez in South Dakota. Much happy times! Family get togethers, introductions, laughter, geneology, traditions and BUFFALO, much to Brown Boy's delight!


It was wonderful. I still get all warm and fuzzy when I think about how much fun we all had. August was also Bald Man and my 27th wedding anniversary. Crazy!

Sept- Little Man really struggled with the re-start of school and I took a class at the Local University. We had many dr appointments and most of them were pretty good news. No bleeding disorder, no bad flat feet, but instead the "good" kind of flat feet. I found my mojo to start exercising, lest I be left for dead on the hills in San Francisco in Nov. June Bug was blessed at her other grandparent's church.


And we didn't know at the time, but we also ended up permanently adopting Jack the dog!
As Bald Man calls him, he is the best dog we never wanted. He is a welcome addition to our family.

Oct- brought more doctor's appts and visits to our house from a behaviorist for the Little Man. Meeko outgrew her wing clipping and we decided to let her be fully flighted.

The Pea and I went in search of Mountain Monday and I took my best picture, ever! I am so proud of it!


Super Mommy came and stayed a week and we had so much fun. Even if she is a size two now, after 9 kids. Humphf.
Throughout Sept and Oct, I was dedicated to my walking exercise and did it four times a week! Good for me! By the end of the month I had met and vanquished my nemisis, The Hill of Pain!


Nov- I signed up for NabloPoMo and went to San Franciso on my class trip at the same time! I survived the hills and no one called 911 for the old dead woman on the hills. Had a great time, although I was really sad I missed meeting L and Granny.
I got a henna tattoo


And played with self heating food

I was successful at accomplishing Nablopomo in spite of all my life craziness! Go me!

Dec-saw the beautiful


and the ugly
We had surgery, PICC lines and Christmas, pee flakes and break ups. Christmas was wonderful, in spite of all the ER visits and lack of time on my part.
One of my favorite things this Dec was watching both Little Man and the Pea bloom in their understanding of Christmas.

For those of you who have stuck through this long, rambling post, here is your reward! The last Monday of 2007!

The best news of this this last day of the year? It looks like my niece is in labor with her daughter. I am waiting on pins and needles for the news.
Happy New Year to all of you and I hope that 2008 brings all of us joy, laughter, love and some dreams come true.

Saturday, December 29, 2007

Awww, You Guys Are So Sweet

I just want you all to know how very much I appreciate the helpful ideas. I wish we could implement some of them. We can not change Little Man's formula in any way, shape or form. The GI clinic at the Large City Sick Kids Hospital actually GAVE us some of the very expensive, elemental formula, EO 28 that he did so well on. But darn the stupid people, they changed the packaging. That, was the end of that. I have it stockpiled for when he gets his tube, (the 15th of Jan) and he gets NO say on what goes in that little tummy. Bwaaahaaahaaa!! But if we changed the taste, texture, or even dared change the box in any form, of the Boost Breeze he drinks, um yeah, that would be the end. This child's food refusal is so beyond normal, he even flunked eating therapy. I have no idea why he never gets hungry, or even how he has survived the last five years taking his only calories for the day, in the morning, in the shower. But he has. Not well, but he has. The whole shower thing before our 14days are up is also a big no go. Because of his last infection with the first implant, they are being VERY careful with the incision. We were not even allowed to give him sponge baths for the first 7 days. I am just praying that he hasn't given up on the formula all together by the time he gets his showers back next week. He did get a sitting bathy kind of thing today, just in a couple of inches of water. Well, because, um. He was kind of playing in his poop today. That, is a first and it had better be a last, because I was royally pissed. Even for his emotional/cognitive age, he is TOO old to be pulling that kind of stunt. I tackled the boy and Bald Man did the bedroom carpet. What did we do before Oxiclean and Febreeze and Mr. Clean Magic erasers?? You do realize I was forced to raise my other children without the benefits of these life saving and necessary products. Like asking a parent to breathe without using any air. Jan 15th will be here before we know it and all this worry will be over. (Not the worry about the skin infections, no, that one will just be starting, but hey, who has everything?) Lurve all of you, thanks for thinking of us. We are hanging tough. Tough and poopy.

Holiday Goodness

Forgive me, I meant to do this before Christmas, but the Holidays are not over and I have had a request, so hopefully this recipe will still come in handy. Christmas is not Christmas at Casa De Tangled without!!!

Jo's World Famous, Better than Brown and Haley's Almond Roca!

1 cup butter
1 1/3 cups sugar
1 tablespoon light corn syrup
3 tablespoons water
1 cup coarsely chopped, toasted almonds,
1 bag milk chocolate chips
1 cup finely chopped, toasted almonds

Melt butter in a large saucepan. Add sugar, corn syrup, and water. Cook over medium heat, stirring now and then, to hard-crack stage (290 F on your candy thermometer) - (Don’t let it scorch!) watch carefully after temperature reaches 280 F. Quickly stir in coarsely chopped nuts; spread in well-greased 13x9 inch pan. Let the candy sit until barely firm, just a minute or two. Spread ½ bag of milk chocolate chips on the top, cover the candy with aluminum foil to keep the heat in. When the chocolate chips are shiny, spread with the back of tablespoon, (don’t lick it yet, you need it for the other side!) Sprinkle ½ cup of finely chopped almonds, press in. Turn out on waxed paper;(you might need to pry it out with a knife, it will still be flexible) spread top with the other half the chocolate chips; Cover with the pan to keep the heat in, when the chips are shiny, spread with the spoon, (when you are done with this part, you may now lick the spoon!) sprinkle with ½ cup of the finely chopped nuts. If necessary, chill to firm chocolate. Break into pieces.

Makes 1, 13x9 pan

Serves: 1 (but it is nice to share)

I am assuming some of you will still be attending parties and needing some goodness to share. This recipe is sure to impress. Enjoy!

Friday, December 28, 2007

You'll Dig Your Eye Out!

I told my husband the other day that this surgery thing with Little Man is like digging your own eye out with a spoon, without the benefit of anesthesia. The best part of all??? I get to do it again with the remaining eye in a just a wee bit over two weeks. I don't think I shall have recovered by then. At the same time, I wish it were tomorrow. You see, our world is crumbling, our son is rapidly losing weight, why you ask? Because Little Man can not take a shower.
I am sure you are wondering what in the world that phrase means. Is it some sort of puzzle, or koan? No, it is just a statement of fact, but behind those simple words lie an entire line of dominoes, cascading down into a tumble of chaos and fear.
I am going to have to back this truck up, for those of you who don't know the WHOLE story. Little Man has eating issues. Always has. For reasons unexplained and/or unexplainable. When he was a wee babe, and not gaining weight, the doctor had us add an extra scoop of formula to every bottle. He did well after that. He weighed 31 lbs when he was three years old. The next two years were not good for him. I kept telling his pediatrician that I thought he looked very thin, but the doc kept telling me he was fine, just fine. I got tired of it by the time Little Man was five. He weighed 32 1/2 lbs. Just 1 1/2 lbs more than when he was three. I took it upon myself to make an appointment with the GI doc. They were ready right then and there to admit him and put a g-tube in. Oh, but my mother's heart just railed against the idea. It is hard to explain, but when you have a child who already has so many things "wrong" with him, it is just heartbreaking to contemplate "making" something else be wrong with him. I begged them to let us try get him to drink the formula instead of getting a g tube. At that point, Little Man woke up every morning very, very thirsty. One of the medications he is on makes people thirsty. He drank water and juice. We never were able to get him to eat much once he was past the very finely pureed baby foods. We were hoping we could find something juice-like he would be willing to drink. I wish I knew why it started in the shower, but for the life of me I can't remember. But for some reason, that is what we did. Gave him the juice-formula (it had to be non soy, non dairy and the only one that is like that is the more expensive than gold elemental formula) in the shower. Fast forward a few years and here we are. He can not take a shower for two weeks, and he will not drink his formula, (which, because of his insurance and now his own oddity isn't the expensive stuff) outside of the shower. He is down five pounds. We are worried. And now, now I wish I were digging my other eye out with a spoon, it would be so much easier than watching him NOT eat. Less than 300 calories a day right now. It is killing me.

Wednesday, December 26, 2007

Happy Holidays!

I did it! I ran around like a crazy person on Christmas Eve and I found out my MACC point. (minimal amount of Christmas cheer). I found out we can get our tree two days before Christmas, and it still smells so wonderfully piney and the littles had a grand time decorating it. I found out I can NOT bake dozens and dozens of cookies and homemade candy and everyone was fine, just fine. Surprisingly, the world did not stop spinning and no one from the Church came by to revoke my Molly Mormon pin either. Who'd a thunk it? My minimal amount of Christmas cooking besides Christmas Dinner includes just one pan of Jo's Almond Roca. My kids really associate that with Christmas. I had asked the kids if they would forgo their stockings, but there was loud outcry against that heresy, so I dropped the idea, and instead just streamlined what went in them. The kids were all grateful and got along wonderfully.
The best part? Of course it was the Littles. The Pea was just so excited that Santa was coming and Little Man? He really, really got it this year. I took him to the Dollar Store and he got a present for everyone. The part he was most excited about was wrapping them. It was really wonderful to have him very slowly have me spell everyone's names while he wrote them on the tags. He has come such a long way. Of course I had to keep reminding him that the sticky side of the tape goes down. Down on the present dear...He woke up Christmas Morning and for the first time realized Santa had been here and that there were presents for him. It was really neat. June Bug mostly just enjoyed chewing on the paper.

I am trying a new option for doing slide shows, I hope it works well. It is from

And now, a Pea story. If you ask Pea who Grandma's stinker is, she points to herself and declares loudly, "Pea is!" Oh yes she is!

Check this picture out. We have English Christmas Crackers with our Christmas dinner every year and the Pea thinks they are neat. Check out where the arrow is pointing to though. A dish of butter.


I was finishing up dinner, making gravy and I went to put some butter on the veggies and I looked at the table, and I could NOT find the butter. Ah! I called to Princess and we both realized, SOMEONE had absconded with it! We went looking.
Lo and behold:


Sitting at her little table set, was the Pea, looking quite pleased with herself I might add.



She likes butter, what can I say??? And she is her mother's daughter, without a doubt.
Happy Holidays to all of you. Little Man is recovering well as far as we can tell. If he would eat something, we would be happier, but ah well, we can't have everything, can we?

Saturday, December 22, 2007

Watch Out!

Christmas shopping, here I come!! The boy had a very uneventful night, he slept til past 9 this morning, but of course he didn't get to sleep until past 11 last night. The home health care nurse came this morning and pulled his PICC line! Whoo hoo! One less thing to worry about. Not only does he NOT have a temp this morning, I thought our thermometer was broken, because it kept reading 97.1. Nope, the nurse took it too, and that is what it is. His chest is no more swollen than it was last night, no fever, and no redness. Crisis averted. He has respite today, so Bald Man and I will spend some time together and then I hit the stores to finish up Christmas for one spouse, six kids and two grand children. Watch out, I have money and I am NOT afraid to spend it!

Friday, December 21, 2007

Yes, Yes and Yes

The doctor says these things:
Yes, your son's surgical site is swollen
Yes, your son has a low grade fever
Yes, your son's incision site is red

Come back if they get any worse. Anyone besides me find that irritating? I waited 6 hours in the ER with my autistic and poorly behaved child to hear all that. The reassuring part is that his labs look great. White blood cells not high, platelets and hematocrit normal. Good stuff to know. Praying he doesn't have an infection brewing, that now he is off the Vanco will flare. As I said before, after the last time, I just don't trust my judgement in this. Not sure if I am over, under or normally reacting.
I shall conquer the rest of my Christmas shopping tomorrow!


In spite of the slight fever, his bloodwork looks fine, so they are sending us home to watch him. I hope with all my heart they are right. I am still worried but I dont trust my own judgment anymore.

Deeper Sigh

Here we sit, still. No one is happy with the state of the boy. He is running a low grade fever, swelling is getting worse. They are talking surgery, I am waiting to hear what they want to do. KJ feel free to swear on our behalf, prayers and good thoughts gratefully accepted.

Deep Sigh

The swelling in Little Man's chest is definitely worse according to the Home Health Care nurse. They didn't pull the PICC line, just in case. I am on my way to take him to the Large City Sick Kids Hospital ER. This could be nothing but a precaution, and they could just send us home.Or this could be what happened last time, which was a deep infection, another surgery, and 3 months of a PICC line. I just needed the nurse to tell me I wasn't imagining the swelling getting worse. The last time this happened, there was no doubt, cause my kid grew a left breast overnight. This time, it is a slower swelling, so it leaves me unable to really gauge if I am over reacting or under reacting. I am taking all my stuff with me. I noticed if I pack to stay, I rarely stay. If I don't pack, (remember? I was coming home last time!) I inevitably end up staying. Thanks for all your good thoughts and humor and kindess, they help me through this tough time.
You do realize I am not done with Christmas shopping yet?? If we stay, Christmas is blown to heck and gone. If not, I have all day tomorrow to finish it up.

Thursday, December 20, 2007

Where Heaven?

Today started off WONDERFUL. I went to sleep right after I finished up his night time dose, about 11:15 or so. And my sweet Bald Man got up at 5 to pull the Vanco out of the fridge to warm up. And oh dear, I overslept an hour. Oh shucks. I slept right through my alarm. One hour once is is not a big deal and I got to sleep 8 hours! I feel reborn!
Then the day quickly went downhill. Little Man's chest is swollen, I am keeping an eye on it, if it keeps it up, we will be off the ER, again... and I have no idea what after that. Last time this happened. (yes, last time, it has happened before) it was MUCH more swollen and he had to go into surgery again to have a VERY large hematoma (blood clot) removed. I have my fingers in my ears right now, la, la, la, I can't hear you!!! Pretending very much that NOTHING is wrong, move away folks, nothing to see here.
Part of what is bad about today is that beloved Peter passed away this morning.
He was at the end of his life span for a rat, but he was such a sweetie. We will miss him. I haven't told Little Man, I will just wait til he notices that Peter's cage is empty. I really think he will be just too upset if he saw the dead rat. Although I wasn't that lucky with the Pea, she saw him. Wanted to know what happened.
Pea: Peter asweep?
Me: No, Peter is dead.
Pea: Me killed him?
Me: No, Peter was sick.
Pea after she saw Unca Oldest Son take the trash out
Pea: Where Peter go?
Me: (not wanting to tell her that we threw him away) Peter went to go live with Jesus.
Pea: Where Jee-us live?
Me: In Heaven
Pea: In de oven?
Me: No, Heaven
Pea: Where Heaven Bam-ma?
Me: Far, far away above the sky.
Pea: Me want to see Heaven!
She then insisted I lift her up into the air, where she stared at the ceiling for a bit and then declared she had seen Heaven.
So much for the plan of not telling Little Man, he just noticed. Asked where the rat died, I told him in his cage. Little Man looked up at me, (I was waiting for the tears) and said, "let's get a new rat" Hmm, not quite as broken up as I expected.
I am off to stare at his chest and pretend everything is just fine, fine, just fine.
***Updated at 1:30 pm*** The home health nurse came over to assess the swelling. Definitely a bit swollen, no infection, (praises for Vanco!) and we will wait and see. In spite of Peter dying and the swelling, today is so much better than yesterday, I am less tired, Little Man is way less agitated and isn't fussing with his PICC line like he was yesterday. He has actually played quietly by himself and let me blog and read in peace. Deep breaths.

Wednesday, December 19, 2007

What a Day!

Remember how I was whining last night about going to bed at 11:15? Oh yeah, now that time seems like heaven after last night. If I get to bed at 11:15 tonight, I will consider myself blessed.
I took a bunch of pictures so I can explain this whole set up.
First, the medical supplies:


Our whole kitchen table filled up with this boys stuff!

Next, the Vanco came in gravity fed IV bags. They look like this:


You hang the bag up on an IV pole and then open that white round dial thingy to let just a certain amount out at a time. The nurse who came out told us we could put it all the way to open if it was taking too long. Take note of that browny-clear cylinder thingy. If you have never seen one before, the medicine drips from the bag into the cylinder and then runs down the tubing into Little Man's arm.

We spent hours last night watching for those stupid drips!!! It took too long, much too long. Hours and hours. I was up til 2 in the morning watching that stupid thing. Up at six to start his next dose, three hours later, it was still dripping, dripping, very slowly. I called the Pharmacy for home health and told them they were ruining my life and to please, please help me. They sent these instead:


I call them med balls. The one on the right is empty, the one on the left is full. There is a balloon inside the outer "skin". The balloon is filled with the right amount of medicine and the pressure from the balloon forces the medicine out at the correct rate. Problem solved. The Vanco delivered in one hour. Had no idea how grateful I would be for that today.

Little Man will NOT leave his PICC alone, he keeps picking, (ha, ha, the pun is unintentional) at it and unwrapping it and fidgeting with it until I was going crazy. I kept wrapping it with the stuff they sent and tape and layers and layers and he still kept at it. He was playing a computer game and I went to my bedroom. Just a minute later the boy is standing near my door saying, "it's okay mom, I fixed it" I was flying across the room to see what he had in his hand.
This my friends, is the end of his PICC line. A tube that runs all the way to his heart. He fiddled with it so much he broke it. Breaking a PICC line is much like cutting an artery, it bleeds without stopping and you can run the risk of actually bleeding out or exsangunating. He had put a wad of toilet paper on the end that was bleeding and was saying, "there, I fixed it, I did". I grabbed it and held it until I could find the clamp and close it off. Bald Man thank goodness was just a few minutes from home and we sat tight so he could drive to the ER with us. I didn't dare do it by myself, and run the risk of him bleeding even more. I really thought there would be no way to fix it and that we would be totally screwed. They were able to replace the end, but the IV team was fairly sure it would be too clotted to save too. Guess what? It wasn't. Whew. The best part of it? I have never, ever been in and out of an ER so dang fast. Time is of the essence with PICC line stuff, so they couldn't leave us waiting. We were in and out in under half an hour. I was in shock!
Now we are home again. We have the last dose of the night running right now and then I am off to bed at the now relatively EARLY hour of 11 or so.
And to answer the questions posed, well, yes, I could change the hours that he is getting his Vanco, he just needs it every 8 hours. I could do it from 11 to 12 and then not do it until 7 but that is even later than from 10 to 11. If I move up the dose to 9, then I have to be up at the unholy hour of 4 to get his Vanco out the fridge so it is warm by 5. That is really a bad idea. I can't escape the fact that it takes two hours plus change to do his med dose. I am just so grateful tomorrow is the last day. Just a bit after 11 pm tomorrow, after his last dose is done, homecare will be over to remove his line.
And yes, Yondalla, I have Bald Man do a dose, but the problem with that is research shows that the more caretakers involved in line care, the more likely you are to run into problems. The clean up is minimal, what eats the time up after the dose is finished is unhooking, flushing his line with saline and then flushing again with heperin to stop the blood in the line from clotting up. The whole while I am doing that, being hyperaware this has to be a pretty sterile procedure, with me being careful not to touch anything that shouldn't be touched and being paranoid that I did anyway. Just one more day, one more day. I can do it. Compared to the 3 months he had his last PICC line, two days is a breeze, right?

Tuesday, December 18, 2007

We Are Home

Home and well, sort of sound. It is really, really crazy here. 9:30, and Little Man is still awake and sadly, so am I. I just wish I wasn't already so tired, it is kind of a bad way to have to finish out what is going to be happening here. Home Health delivered all the goods, I will have to show you a picture later, and the nurse came by to give me the teaching I needed for his Vanco treatments for the next two days. At first I thought the dosing schedule wouldn't be too bad, with a dose at 10 and another one at six and then 2. That is eight hours inbetween doses, right??? Um, yeah, whatever. I have to START the dose at 10 pm. It takes an hour to infuse, so the very earliest I will be in bed will be at about 15 minutes or so past 11, if I do a quick job with flushing his line with saline and heperin. And the six part in the morning? I have to be up a MINIMUM of half an hour early to get the Vanco out of the fridge to warm up. So I get to sleep from 11:15 to 5:30. You will note this isn't even close to eight hours and in my book that miss is as good as a mile. I am praying for naps, because otherwise, I will be totally loony by Thursday.
Thank you, thank you for all your kind comments, they were very nice and distracting when I really needed some good loving.


He went to surgery at almost 1 and I finally got a Mountain Dew and my breakfast/lunch. No way to eat or drink in front of a kid who is nothing by mouth before surgery, I would feel too guilty.
They are already done with the generator and are placing, guess what? The PICC line. I guess Neurosurgery won this round. The good part of that is we will most likely be home today! Yippee! And only a couple of days of Vanco by way of PICC line , so things should be pretty back to normal by the weekend, which is good, because this mama is tired! So far so good. They took him off to surgery, kicking and screaming, literally.
I will keep you updated on the recovery. Thanks for everything, really, you have no idea how much it means.


I wasn't dressed but I did have a robe on and was sitting in a chair when the doctors rounded this morning. For those of you who have no idea about, be grateful. Sleep is a precious and rare commodity when you are inpatient. I always end up in Little Man's bed, he can't bear to have me more than a skin's width apart from him. But that means I am generally asleep when the docs come to check on their patients. For some reason it is always an entourage that arrives bedside at some unholy hour. I wouldn't be surprised to find out that they recruit kids from the local highschools to round with the docs, because the majority of them look to young to even drink, much less to be done with med school.
So there you are, half asleep, braless, tired from being woke up every two hours all night, hoping beyond all hope that nothing unmentionable is showing, while this qroup of young, mostly male doctors stand over you, discussing your kid in doctor speak. Today, thanks to Little Mans overflowing bladder and pullup, I was not only awake but sitting in a chair with a robe on. Ha! Their evil plot was foiled!
Last night was thankfully, uneventful. Little Man slept as well as he ever does, the IV was well behaved, he had no bad reaction to the Vanco and he is either first or second on the surgery schedule. So far things are looking up. Please keep the comments coming, right now, I live for them! Pitiful, but true.

Monday, December 17, 2007

Do You Remember?

Do you remember how giddy I was at the thought of going home tonight and then coming back tomorrow? Yeah, well, whatever. Little Man has really lost it in a big way and I can NOT leave his eyesight without him screaming and crying. So guess who is spending the night here and was NOT packed? No toothbrush, no clean undies, no deoderant? Um, yeah, that would be me. Guess who made not ONE but two, hour long each way trips back and forth to the Large Cities Sick Kids Hospital? That would be my sweet Bald Man. Guess who FINALLY got all his night time meds and fell asleep like 2 hours past his bedtime? That would be my sweet boy. He has been so very foul and really, I have been very, very patient, because it breaks my heart that he is being pushed over the edge. It is now almost 11, I am just now getting to eat something that wasn't my breakfast so very many hours ago. Infectious Disease and Neurosurgery are duking out over the PICC line thing. Yes, no, yes, no, yes, no. They will do what they do and I don't even know what to think about it. On one hand, I feel like going home with a PICC line is a better idea, because I would rather he was antibotics for a week or two. The other part of me would much rather just do our three day sentence here at Club Med and be DONE with it. But that part of me worries that my boy will wake up after we get sent home and have a raging infection like last time. So I just don't know what to think. Either way, we will survive it. He is either first or second for surgery in the morning and I am just glad I am not having to drive in for same day surgery. Thanks.


My poor boy, he is having a rough time both physically and emotionally. He lost his ever loving mind after his first IV failed just an hour after they put it in. He just lost it. There has been much screaming and violence. (on his part, not mine). They absolutely cannot get his meds straight, which is just hard on all of us. He had an instant allergic reaction to his stand by antibiotic, Naphacillin. (I like the way that sounds so mild, cause it involved screaming it burns, it burns and clawing wildly at his arm in a manner reminiscent of Gollum reacting to the Elven rope.) Because he is VERY allergic to the other med they want to use, we are switching to Vanco. Yikes! The adventure continues.

Mountains in December

We are in. No PICC line, thank goodness,just a regular IV. Not that that was easy. A couple of people got hit and someone (me) got scratched and choked. AND they just came in and said they are going to have to draw more labs. Sigh. Poor lil guy. He is having a tough time. ***

I thought these pictures were so beautiful with the clouds just half way up the mountains.

Photo Sharing and Video Hosting at Photobucket

Photo Sharing and Video Hosting at Photobucket

And so, the next event begins. I couldn't sleep last night, and it was after 3 in the morning before I was finally able to do so. I didn't feel particularly worried, but obviously I am.
We are off the Big City Sick Kids Hospital for most of the week. His actual surgery is tomorrow, but they start antibotics today. When they called this morning, they were talking PICC line again, so I am once more at a loss to what is actually happening. I am scared and worried. I need to get my stuff together. The good part is that Bald Man is taking the night shift tonight so I will be back in my own bed tonight. The usual routine is for me to spend one night and then for Bald Man to take a spell the next. That way neither of us get too tired. Well actually that way I don't get too tired. After a few nights of no sleep I turn into something really scary and depressed.
If you are one of my local bloggy friends and want to stop in or call, please email me and I will give you the info you need to do so. Any and all prayers, good thoughts, burning joss and of course blog comments, will be accepted gratefully. I guess I should get off the computer, Bald Man is hustling around packing and I need to stop avoiding the inevitable and just do it.
Here is some more Holiday Cheer for ya!

Sunday, December 16, 2007

Holiday Disgustingness Cheer

This post is not for the faint of heart or stomach. But I know some of my bloggy posse appreciates the gross and reality, so for you, darlings, this is for you!

Jo's Winter Wonderland

I'm dreaming of a yellow Christmas,
just like the ones I rather not know
where the yellow is the color of the snow
Where the bathroom glistens

like this
and this
and the smell of urine fills the air!!!!

I'm dreaming of a yellow Christmas!!!
May your days be merry and bright, and
may all your Christmases not be like

Why oh why does he have to do this??? Why can he not just take it off, (of course I had offered just a tad earlier, but he wanted to watch Ben 10 and was too busy to be undiapered) and just throw it away, or even just leave it laying on the floor?
Did you know that the poly thingys in diapers, once laden with a liquid, (such as urine) are really kind of rolly and hard to get up off the ground? And if you sweep them up, they get stuck in your broom and even if it is Sunday and you are pretty good Mormon and don't usually go to the store on Sunday, you will today because you need to buy a new broom, because you will never, ever, use that broom again???
Pee flakes. May all of my bloggy dears spend their whole lives and never, ever see one. Except on my blog.

Saturday, December 15, 2007

A Little Christmas Cheer

This is one of those posts that if you are not wearing a high CPF (cuteness protection factor), your life is in serious danger. I will wait a moment while you gob on thick layers or just raise your shields, because I love you and want you to survive to read my blog another day.
First, the explanation. We all know pictures are worth 1000 words.

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You may wonder about this picture. But it is all true. No, the child is impossible to keep in clothes, so no, she is rarely seen in them.
Yes, her mommy lets her play with "pretties", in this case some Avon lip gloss that the kid just went nuts for.

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But dang, she is so cute. And she has a crush on a fat man in a red suit.

In an effort to capture her in more appropriate seasonal dress, here is another attempt.

While she is more dressed in the second one, and the sound effect is of course, beyond cute, I have to admit the first take is my favorite, messy faced and naked. Gotta love that ho ho ho! She sure brings lots of Christmas cheer to our home.

Wednesday, December 12, 2007

Coming Home

Watch this video before you read the rest of my blog post. It is ten minutes long, so give yourself enough time to watch it.

I am hoping that viewing this video will give you a better idea about myself, my culture and my beliefs.
This video touched me in ways that are hard to explain. I was filled with joy, with a sense of belonging. Some of you, I think, will find my feelings strange and foreign, (but perhaps not). There is just such a sense of deep connection between my people, the land and the creatures who inhabit this world with us.
The concept is called "mitakuye oyasin." This Lakota word means "we are all related." Kinship with all creatures above, below, and in the water is a living principle that gives the Lakota a feeling of safety in the world, as well as a feeling of reverence for all life, a sense of purpose for all things in the scheme of existence with equal importance to all, and an abiding love. This concept of life and its relations fills the Lakota with the joy and mystery of life. As Standing Bear puts it, "The Lakota could despise no creature, for all were of one blood, made by the same hand, and filled with the essence of the Great Mystery."
Lakota Beliefs
My mom sent me this youtube video, knowing that I would rejoice with her over the return of our brothers and sisters to their home. I am hoping you will be able to rejoice with all of us, in the rightness of this action. What a great time of year to celebrate the concept of HOME!

Tuesday, December 11, 2007

Unexpected Storms

I know I mentioned a tornado a few weeks ago. This one though, bloggy dears, caught me so off guard, I am just reeling from the shock.

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Oldest Son, Girlfriend and our beloved little June Bug.
It looks like the wedding we had planned for October and all the dreams of what was to be with this sweet little family are over. I have been crying and crying over the break up. It doesn't look like there is any fixing this relationship this time and I am going to miss Girlfriend more than I can say. It isn't that we aren't speaking, she will always be the mother of my grand daughter and I love her more than I can say, but it won't be the three of them together. Some things just can't be patched up and as far as I can see, there isn't any kind of glue in the world to put these broken pieces back together. My heart either. Our whole family is grieving and there were many, many tears shed yesterday. We are clinging to each other through this storm and sorrow has become an unwelcome guest in our home. It will get better in time, but for now, it just hurts.

Little Man update. Argh! We FINALLY saw Infectious Disease yesterday. No PICC line. Yay for that! Boo for the fact that instead, we will be spending A LOT more time in patient. A day early and three or four post surgery. VNS surgery rescheduled for the 18th, (are they trying to make me crazy?), we will be in on the 17th to start the antibiotics and then staying til, like the 21st. Crap. Then, we get to lather, rinse, repeat in early Jan for the g-tube. Crap, again.
In the meantime, we are giving Little Man hibiclens baths every day and putting some nice Bactroban up his nose twice a day. Infectious Disease took a culture and if anything nasty shows up, the whole game plan blows up and changes. So far, all of his bouts of cellulitis have been just run of the mill Staph Aur, but I suppose the doc is worried about MRSA. I can't worry about it, I just don't have it in me. I suppose that is rather nice, I really don't have the extra mental/emotional energy to worry any more than I am. My plate is full and I am overwhelmed.
I am sad.
I am stressed.
I just want/need to run far away.
Sorry for the downer of a post, but this is real life in Casa Tangled right now. Thanks.

Friday, December 07, 2007

Making Christmas Meaningful

Sue, over at Naval Gazing had a contest about Christmas traditions. Two reasons why I didn't do the contest. One was because I knew if she chose me, there would be all kinds of allegations about unfairness and stuff, because she loves me so much. (ha!) And two, really, I just forgot to do it in time.
It certainly got me thinking about the stuff I did with my kids when they were small, to make Christmas more meaningful.
One of things we did every year, is the kids were asked to go shopping for another child, and we would wrap the gifts with tags saying what they were and take them down to the homeless shelter. It isn't that we were so rich, (with six kids, who is?) but I wanted my kids to KNOW, no matter how little we had, there were always others who had much less, and we always had more than enough. Enough to share. The kids always seemed to enjoy doing that. Besides the gift from each child, we also gave the shelter things like razors and soap too. Just our family's way of giving back.
When my kids were very small, I wanted them to have hands on experiences with Christmas. For that reason, I made this for the kids when they were very young:

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I sewed it out of one of those panels of fabric you get at the fabric store. It is soft and I wanted to have a Nativity scene that my kids could play with and hopefully act out the Christmas story. Now we get to my favorite part of what we did. The little manger had nothing in it. Baby Jesus didn't come to our house until Christmas morning. Next to the manger was a container with yarn, (pretend straws) in it. Every time any of the children did something kind, they were able to put a "straw" in the manger. The premise of this tradition was that the Baby Jesus would arrive on Christmas morning to be laid in a bed filled with kindness of the children's actions. The kids would really get into it and find ways to share and to do extra chores and to be patient with each other to "earn" straws. The nicer the kids were, the softer Baby Jesus' bed was. I have sweet memories of the children saying, "mom, I did such and such, can I put a straw in manger?"
I wanted my kids to have fun with Christmas, so we do the Santa thing, but being Christians it is important for us to celebrate the reason for the season. We have lots of good Christmas books and we always read the book of Luke out of the bible on Christmas Eve.
There is a lovely story that we read every year, that I think does a wonderful job of tying the Santa thing to the real meaning of Christmas. Here is a link for that story. Santa's symbols of Christmas
I would be very interested in any of your favorite Holiday traditions if you care to share.

Thursday, December 06, 2007

Mathematical Perfection

I love this time of year! I take every opportunity to rattle off the kid's ages!
26, 24, 22, 20, 18 and 10. Perfect. Perfectly spaced. In case you didn't know, Mormon women who know have their children every two years. Little Man is a outlier because he is adopted. I am sure if we had decided to continue on in the biological creation of offspring, my ovaries would have obeyed what I thought was a strict commandment, "thou shalt have thy children every two years". But my sanity at that point thought five bio kids was plenty, and we figured we could always adopt if we chose to add to our family again. (Don't ask me what we were thinking, the kids were young and cute and it seemed like a good idea at the time!) But in the strictest mathmatical sense, because JJ's birthday is in Nov and Princess' is in Dec, the children are perfectly aligned for only 6 weeks. By Saturday, it will 26,25,22,20,18 and 10. And then in March, Oldest Son seriously messes it up and it will look like this: 26,25,23,20,18 and 10. So I give up after Dec 8th, because it is all over by then. The mathmatical perfection will be marred by the entrance of months into the age line up. And in case you were wondering, this is the month breakdown age space.
16 months between Pygmy Child and the Princess. (I know, I know, but she was the MOST perfect baby and we figured we were such great parents, so why not? Duh. We learned) 27 months between the Princess and Oldest son, 26 months between Oldest son and Tank, 30 months to the DAY between Tank and JJ. (another feat of mathmatical biological perfection that I am very fond of) 7 years, 8 months between JJ and Little Man. I suppose if I had known how fond I would be of their perfectly spaced ages, I would have tried harder for a stricter 2 year age break. Ah well, hind sight is 20/20. I have until Saturday to enjoy this interlude of perfection.

Tuesday, December 04, 2007

Reality Bites

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I was sitting today, admiring my grand daughter's hands. I LOVE baby hands. The roundness, the sweet dimples on the knuckles, the soft, soft, skin, how very small they are, all tucked into mine. I brought her hands up to my mouth and softly kissed the backs of her hands.
Then I screamed, dropped her hands, and wiped off my mouth, screaming, "oh gross, oh my gosh, that is so disgusting, oh my gosh, that is so gross!"
Uh, yeah. She had boogers on the back of her hand. Long sticky yellow ones. I got snot on my mouth.
So much for how sweet toddlers are. Reality really stinks.

Monday, December 03, 2007

The Mountains in Winter

It snowed, really snowed this weekend! Like 8 inches. The mountains look soooo very pretty. Here ya go!

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And because it is my blog and there are other beautiful and or cute things around here, here is some more!

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Along with the snow, it has gotten much colder. Our poor little Jackie boy has been shivering when he goes for his walks. We needed to take care of that, much to Jack's dismay.

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The Pea was posing:

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I saved the cutest for last!

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Anyone who knows me well knows THIS is my favorite baby trick in the whole world!!!

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I love it when babies do that and I love it even more when it is my June Bug!