Wednesday, September 27, 2006

More on the Mormon Thing

Last night? Not so great. First Little Man didn't go to sleep until after 10 and then for some reason escaped snoring Bald Man's grasp during the night, crept into bed with me and preceded not to let me sleep most of the night. I suppose I could have gotten up and found out what was going on, but honestly, I was just so dang tired, all I wanted to do was close my eyes and sleep for a few more minutes. Did that pretty much all night, inbetween being woken up.
When I was woken up this morning by the get readyings of the Little Man, I just wanted to go back to sleep, then I remembered, oh my gosh I have visiting teaching to do this morning.
I thought, oh my Bloggy friends have no idea what VT is! So here ya go, for your edification.
In our church, we have a women's organization, called Relief Society. Every woman over the age of 18 is part of it. Part of what they do is called visiting teaching. You are assigned a companion and you have a list of ladies you are supposed to visit each month. There is a lesson that should be taught when you go.
There really are some great things about visiting teaching, both teaching and being taught. Under a perfect system, it means every single woman in the Church is visited once a month. If she has any needs or concerns they can be passed on to those who can help, if you are unable to do it yourself.
This was said as an example by one of the ladies I visit taught today. A young mother, in a state where she had no family, was left by her husband with two small children while she was in nursing school. The ladies of the Ward stepped in and helped with child care so she was able to finish her schooling and then move closer to home. What a neat system! (Working well of course)
It really is great to have a place where you belong, immediately when you move to a new place. It helps me meet the ward members and helps me remember that I am not the only person on the planet struggling to get through day to day life. A chance for service when you are feeling whiny is a good way off the pity pot.
While I would never want the ladies to feel like I am checking them off my list as something to be done, at the same time, it feels so great to have it done! Yay! Hopefully my companion and I will be better about not waiting til the last few days of the month to get it done.
And guess what? I got a nap. Ah the blissful curiative powers of slumber, when you are so tired you should be shot and put out of your misery. Nothing else got done, but hey, I am feeling like I might live after all, so who cares???
Enjoy your little mini lessons on the interesting habits of the peoples called the Mormons.

Monday, September 25, 2006

The View from My Window

Do you want to know what happened while Little Man was in the hospital?
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Driving to the ER it was warm and getting warmer, I think it hit near 90 the day he was admitted. But while I was slowly going crazy in that hospital room, Autumn whumped itself, plunk! right in the middle of Utah. It SNOWED for heaven's sake! So now the days are cool, some days barely warming up to the mid 50's. Many days in the high 60's. Warm, sunny days with the crisp note of Fall playing as an undertone. The colors are changing in the mountains, (see the above pic) while down here in the valley, the cottonwoods are just beginning to yellow at the tops of the trees. But you can feel it, Autumn has arrived. And it did it while I wasn't/couldn't watch.
Update on the Funny Farm.
Little Man has caught a cold. But guess what? I gave him a Dayquil and sent him off to school anyway. He is just a little sniffly and man oh man do I need some time off!
Friday he had two doctor's appointments. He was sooo good at the first one. And sooooo awful at the second. I got myself choked, hit, bit, scratched, etc. I was not too happy driving home. I buckled him in his carseat and told him NOT to talk to me. Good move. I wasn't nearly as furious by the time our hour long drive was finished. The good news from his GI doctor is he is not losing weight at a furious pace. Even though he is continuing to refuse his formula, he is getting enough calories to either maintain or not lose weight really fast. Deep breath! Yay.
He is doing well in school and I am so relieved. It makes me wonder if that is what was going on with his violent outbursts? Now he has his routine back and he is getting on the bus so happily!
Sunday was church, and then I made lasagna for the ravening hordes that descend upon us on Sunday afternoons. I got some sweet Pea time and that made me happy. Her loves her gramma sooo much. Ditto.
Who said mondays stink? Mondays rock! Tank is off to his first day at his diesel machanics school, Bald Man has gone to work, Little Man is gone to school and blessed silence reigns in my home. I am working on a needle felted witch and perhaps I shall spend some time doing that today. Otherwise, just a couple of errands and the day is mine til this afternoon.
Hope the view from your window is as pretty as mine and your monday as full of some sweet time.

Wednesday, September 20, 2006

Where We are Today

Little Man continues to improve in his motor skills. Bald Man had forgotten to give him his benedryl the doctor has prescribed to help combat the chemical effects in his body. Well, no wondering if it was helping. Yup it is. More tremoring etc. We didn't forget today.
Little Man is pooping better and with less drama. Thank goodness!
The not so great stuff. Day number 11 with no formula. His calorie intake yesterday. Zero, yes, you heard me correctly, he ate NOTHING yesterday. Not a thing. Not so good. Today, he did better, a bit of breakfast,(8 waffle sticks) a bit of lunch, (a piece of pizza)and for dinner, 2 hot dogs. So today was good.
We have been here before. 4 years ago he nearly starved to death. You know how your mother always tells you not to cater to your kid's food whims, because your child won't starve themselves to death? Well, yeah, that only applies if you have a normal kid. What I found out is a neurologically abnormal kid, will and can starve. His daily calorie intake, sans formula was about 300 calories a day. Not enough to keep his body going.
I spoke with his GI doc today. We have to wait for one of two things. Either for him to become dehydrated or for Little Man to lose 10% of his body weight. Then it is NG tube time.
I was talking with my mom today about it, and here is the way I see it. Four years they wanted to do a g-tube. We have avoided it for four years. I am grateful for every year, every day we haven't had it. Although it is a scary, scary thought for us, with Little Man's undiagnosed immune problem, it is one of two choices when/if we get there. Certain death by starvation, or possible death by infection. While we don't have a lot of hope for avoiding this whole thing, he could suddenly begin drinking his formula again.
You want to know the irony of this whole thing? Really, truely I gave a laugh about it. His insurance has refused to pay for his formula (again!) because he dares to drink it. Ha, if he gets a tube, they have to! The irony is delicious. Really. Ha ha!
I took a header yesterday evening at a friend's house and you know what? I am really just too old to be skinning my knee. I pulled something in my shoulder, not terribly painful, but I just don't feel all that hot today. Advil and gentle with myself today, hopefully I will be feeling a bit better tomorrow.
The big news today? I took Tank, (age 19, recently moved back in with us. The Boomerang Generation. They call them that for a reason!) To the local community college to learn Diesel mechanics. I am so dang proud of him. Way to go Tank Boy.

Tuesday, September 19, 2006

Every Day

Every day is bringing improvement in Little Man. We had a doctor's appt today, and the doc said just to watch the swelling in his hand and arm and if it gets worse, then of course call him. But at this point it didn't seem infected. Big sigh of relief there.
Another huge sigh of relief that this kid finally pooped! Yay, with no huge outburst or anything. He slept well last night, his behavior has been great, his teachers are amazed. He isn't talking as slow and his ability to walk is improving every day. He even sorta ran, well walked quickly today and mounted the steps to the apartment without looking like he was going to fall down or needing me to help him.
He is still drooling some, still tremoring, still very clumsy in his movements. Oh and this is day number 10 without formula. Yesterday's total calorie intake? 2 chicken nuggets, 3 spoonfuls of pudding and some apple juice. That's it. But that is not an extreme emergency yet. We have a call into his GI doc and we shall deal with it as it needs to be.
But overall? Improving, every single day. It is great and I am feeling much more like he will be able to totally recover from the Thorazine Debacle. And the psych? Let's just say we won't be seeing him anymore! We will be seeing the one Little Man started seeing while he was inpatient.
I guess I am feeling like perhaps I shall recover from this too. I am feeling more hopeful, less worried, less stressed. Breathing deep again.

Monday, September 18, 2006

Better than Diamonds and Pearls

Amazing! What a decent nights sleep will do for your mental health! I could use a couple more hours, but I just might take a nap later to fix that.
This morning:
...Little Man's hand continues to be swollen, but guess what? It isn't worse! Whoo hoo. So we will keep watching it.
...Little Man refused his formula again. Booooo! Day number 9. He ate about 200 calories yesterday. All I can say is Praise God that he had about 7 extra pounds on him, because I bet they are all gone now. We will see the doctor tomorrow and then we'll decide where to go from there. He looks good, so I am not terribly worried yet. I just know a crisis is looming on the horizon if this doesn't get handled.
.... Poop is a problem, he still isn't. But he is just now had his meds for not even 24 whole hours,so I shan't worry too much about that either.

And best of all??? I am sitting here in an MESSY, but empty apartment. Little Man is off to school in spite of his mighty protests, Bald Man is off to work. Quiet and sunshine reign supreme and Jo is breathing in deep! I have a new Steve Martini mystery I have just started, there is chocolate ice cream with hard shell if I so choose to indulge, and quiet, blessed, sweet, peaceful quiet. I have hours today to do as I wish. House work is NOT on that wish list.
I do not know what Little Man's health will bring over the next few days, we are far from out of the woods, but you know what? Right here, right now, these next few hours are mine and I am holding them nestled close to my bosom and cherishing them for the treasure they are.

Sunday, September 17, 2006

I Am Not Going to Think About It..

...Little Man's back of his hand is swollen and so his the part of his arm above his wrist.
Possiblities: Good, just regular ole swelling due to an IV being in there and then them trying to put another one in on the same arm.
Bad: Why would it be swollen? The IV didn't infilrate and the worst possiblity is Cellulitis, again. It would mean ANOTHER hospital stay, IV antibotics.
It isn't red, so I am not going to do anything at all tonight and I will deal with it in the morning.
...Little Man has not had a proper bowel movement in oh, say a week??? Which the doctor, the one who looked like a High School Debate Club president, reassured me that even with Little Man's long history of low motility and chronic constipation leading to hospital clean outs, was nothing to worry about.
Bad: just dealing with it. Little Man is having problems, crying, saying he can't go. What the heck am I supposed to do about that?
Good: He hasn't had his anti stop up medicine in days, (since that would have required swallowing) so after he has his meds for a day or so, he will be fine.
...Little Man has just completed day number 8 of no formula.
Bad: if he quits drinking it, we are SOL. (Soooo out of luck). We are talking tubes here people.
Good: He has been really out of his routine, which is a big deal for people with autism. So after getting back into his regular routine, he will go back to drinking his formula that costs as much as oil in the shower, like always.
Anyway, I am going to get a good nights sleep tonight and save any worrying for tomorrow.

Going Home

Yay! We are heading home. Good thing. Two nights in a row of only about 6 hours of sleep and I am grumpy and impatient today. All I want is to take a nap. Little Man continues to improve. He is certainly not back to himself yet, his movements are very stiff and he is in slow mo still, just not as bad as it was.
I am annoyed at Bald Man who went home to sleep and then had the nerve to sleep until 10 when I was too tired to even be alive. He had better take over Little Man's care today or I will be royally furious.
Not such a great day today, I am really too tired to be sensible or nice. Sorry.

Saturday, September 16, 2006


Much improvement with Little Man. My heart is singing with joy and relief. He is not back to his usual self, but he is swallowing today! Root Beer, Gatorade, and he ate ice cream! Geez, they were talking NG tube, Liza knows all about that one, huh hon? But it is looking really promising that we will go home tomorrow with or without an NG tube if needed. If he continues the way he is going with drinking though, there will be no NG tube and just home.
He woke up this morning, shaky but able to talk, not like yesterday when there was no one behind his eyes. His eeg was abnormal, but only his usual abnormal, not constant seizurey abnormal. So a GOOD abnormal! My boy is returning to his body and we are all breathing a sigh of relief. wheewww.
Bald Man is here with me today and it is nice to have some help. In fact, Bald Man is in the playroom playing game cube with the little monster whilst I check in with my bloggity peeps.
Little Man's movements are stiff, shaky and slooooowwww. Like someone slowed him waaaayyyy down. He talks slow, moves slow. But he is talking and moving! Not doing so good with swallowing solid stuff, but he is not an eater anyway, and as long as he can drink his formula, who cares for now? Not that he has, drank his formula, that is. Today is day number 7 with none, he has lost a fair amount of weight, but he had a few extra pounds anyway.
I feel like telling the nutritionist who gave us a bad time about those few pounds, nanny, nanny boo boo! This is EXACTLY why we wanted those pounds on him. It gives us breathing space. And anyone who has ever had their child be life threatening thin is grateful for some wiggle room.
So my Bloggiest cream puffs, things are looking up here at Children's Hospital R Us. And the current plan is forbearing any backwards slippage with Little Man's recovery, we will be going home tomorrow. Thank you for your prayers, *good thoughts*, kind wishes and everything. You are a ray of sunshine on a stormy day.

Friday, September 15, 2006


Overall, yes I would say he is improving. He scared me today, when I arrived and he was not responding and being very, very agitated. But some meds, (I personally think we are having some serious seizure issues here!) and he is doing much better. He is walking now, very unsteady, but enjoying the jaunts up and down the hall with a grin on his face. He is A LOT of work today, no sitting quietly by his bed and reading or anything for mom. Eating lunch was a joke, but he is doing better. He was able to enjoy his beloved video games, and it was sweet to see his smiles. He is putting more words together and intiating conversations. All good things.
I did ask the doctor what Bald Man and I are in fear of. "Is this permanant?" She says no, not if it is caused by the Thorazine. Whew. But then... she said, if this is his seizures, then I can't say. I can't bear to think of losing my boy like this. Not in body, but in mind and spirit. So I WON'T think about it. Not now. I will face it if it comes. The evil of this day is sufficient unto its' self, thanks.
They did an EEG, we don't have the results yet.
Bald Man is here, to give me a break. Of course my first thought is of you, my Bloggy Darling Dearests, but after this? This mom is going shopping, and out to dinner. Mental Health Break, whoo hooo!

Thursday, September 14, 2006

Tag, He's It

Tag, Bald Man is IT! By it, I mean he can sneak a few minutes in here and there and try to sleep at the hospital with Little Man. And me? Me? I am going to sleep all night my Bloggy Friends, in my own bed, minus one snoring Bald Man.
And, since pictures are worth a thousand words, I will let them tell the story.

Little Man yesterday:

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And I mean ALL day. Asleep, almost non responsive.

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Look at those eyelashes! They are to die for. I figured I might as well enjoy my little sleeping beauty.

Little Man for the first half of today:
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And finally, progress!
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There ya go, one of the most precious smiles on the planet. His eyes might be at half mast, but still! He is looking better. I can see a glimpse of my boy here andthere. By the end of the evening he was more responsive, and could point to something he wanted and has said about 5 words. He can bear weight on his legs for a short time and even took a step. He is smiling and laughing sometimes, (mostly when he wipes his excessive drool on me!) He took a few sips of gatorade, so his swallowing is much improved. He is still not at 100%, but he is improving.
They did more tests today, to make sure they are not missing anything. We saw LOTS of doctors, well, they say they are doctors, but mostly they look like the High School student body officers. One of the doctors said Little Man is very fragile right now and that they are worried about him. UM, NOT words a parent wants to hear. He is in the right place, being monitored closely.
And our family? Tolerating it far too well. By that I mean it has become the norm for Little Man to spend time in the hospital. We are on the neuro floor, 3rd time for that floor. Sad, I keep turning the wrong way because we were at the other end of the hallway last time. It is really sad what human beings can become immune to. My kid being in the hospital used to be sooo traumatic. Don't get me wrong, I am worried sick about him, but the being in the hospital its self is routine. I am used to how the whole thing works, and very, very sadly, so is my son. This is the life of the chronically ill.
Thanks for peeking in, the doctor said today not to expect to go home for a few more days. Sigh.

A Smidgen of Improvement

We got more sleep than I thought we would last night. I am who is this kid in this bed and what have they done with my son? The kid laying there limply is NOT my child. Good news, he can swallow again, with difficulty, but still! Ya gotta take the good news where you can. They are going to hold off on the MRI for now, they found one from 3 years ago and unless he doesn't improve at all, they are just going to wait it out.
Do you know how much I love you? I came and updated BEFORE I ate breakfast. I did put my bra on before the docs came in, for fear that the sight of boobs hanging to a ladies knees would scare them to death. Or what would be more likely is that instead of paying attention to my son, they would be stealing sneaky glances at me, wondering, Oh my gosh, are those really that ladie's boobs? Naw, there is no way those lumps by her knees are breasts, is there??? And then the group would leave and discuss it in hushed tones in the hallway.
Oh and by the way?? When the heck did they start a doctor's program in high school? So that just graduated seniors are parading down the hallways and pretending to be grown ups? Is this a reality show, where they are waiting for me to say, hey, could you get someone who wasn't born less than 2 decades ago in my son's room? YOUNG, very YOUNG.
Or maybe I am just old, very old...sigh.
Thanks for the comments, prayers and good thoughts. They mean the world.

Wednesday, September 13, 2006

Little Man Update

Uh yeah. Long day. Ct scan, lumbar puncture, many labs run. So far every HORRIBLE thing they are looking for is not present. Praise God for those blessings. I guess for me it seems so clear cut. Um thorazine overdose. For the docs though, not so clear cut. This is child who can not walk anymore, can not talk anymore, can not swallow, something is WRONG. Never even occurred to me it could be awful, horrible things, stroke, menegititis, etc. We are in for the duration. MRI planned for tomorrow to check for a Chairi Malformation. Not a good thing either, and a possiblity with his genetic syndrome. Because of his VNS, he has a magnet in his chest, so they have to use a special scanner, etc.
Tonight, it is past 10, and the tech said I could take a mental health break, so I come upstairs to check in with you guys.
Little Man is still not able to walk, swallow, talk and gets agitated easily. Because he is chronically in the hospital, Bald Man and I have the routine worked out, we tag team it. So tomorrow, early if I don't get enough sleep tonight, or later if I do, Bald Man will come up and tomorrow night, if we are still here, I will sleep in my own bed.
Sucks people, it really does. Prayers please. Thanks for thinking of us. And for lurkers delurking! That was a delightful surprise, I really thought no one except my three constants was still reading.

We Are Going In

I can not find words to express my horror at Little Man's condition this morning. He is unable to take any of his medications, (He is on three anti-seizure meds) I thought I would look up difficulty swallowing and was lead to a multitude of sites saying it is a symptom of Thorazine overdose! I am so upset, I just took him to the psych's office yesterday, they saw him, I TOLD them he was having troubles swallowing. This missed this. So in a minute, after a very quick post, breakfast and shower on my part, we are off to the ER. He is not having any trouble breathing or anything like that, so I don't think it is a life or death 911 call, or you would not be reading this. But definitely something needs to be looked at. I will take a packed hospital bag in case we end up staying for a couple of days. My poor boy. Bald Man and I are worried sick. There are puters there, so if we end up staying, I will still post as soon as possible. Prayers, *Good thoughts* would be deeply appreciated.

Tuesday, September 12, 2006

Mega Whine fest

We had three good days. Days where Little Man slept at night and days where he wasn't violent during the day. I don't think anyone is reading my blog anymore and I hardly blame anyone, this is all too depressing and awful.
The seizures started and got BAD on Sunday and are so horrific. Today, Little Man is doing TERRIBLE! He is so out of it, drooling, can't hardly walk, can't sit up straight. He is like a drunk person, stumbling, falling. Seizing at school. We keep giving him more meds to try to help with the seizures. And yesterday? I called the psych's office and told them. You know what they said? Call his neurologist! Arrgggh. Well I called the neuro yesterday and today and still have not received a return call. We are cutting down on the Thorazine, it is robbing me of my child, and trying something else to help him sleep. Rozeram if anyone cares. Which I don't blame you if you don't. I wouldn't either, except it is my life and I don't get a choice.
He isn't eating anymore, he has lost 3 lbs in the last week. He won't drink his formula. He is having trouble swallowing and has begun throwing up his medicine.
And my husband? We are both on ultra stress level but he is driving me crazy! He is way too impatient with Little Man which is frustrating me. He is isn't listening to me and that is making me mad. We are both snapping at each other. But because Bald Man isn't doing well with this, it is leaving me with more and more care of Little Man, this is when I need more help, not LESS! It is left to me to get this boy's medicine in him, Bald Man does a botch up job on it, everytime, and Little Man ends up puking it up because his dad can't be patient enough. It is bad here, really bad. I am not happy, low tolerance for anything myself because I am soooo stressed. My crazy kid is driving me crazy.

Monday, September 11, 2006

The Weekend, Um.. Yeah....

Oh I hate that I always seem to be whining! Things are better and things are worse, and I don't have a way for the two things to balance each other out, because they are so different.
The good stuff! Little Man is sleeping much better.
Little Man is much, much calmer. We were able to go out to dinner with him, (and all the sibs) and he was SOOOO good.
No more hours long melt downs. I haven't gotten hit, scratched, bit or spit on in days! Nor have I had to restrain him for his and my own safety.
He started school on thurs and the bus actually came and got him today and will bring him home. So far, so good. He is adjusting much better than we expected.
The bad:
Seizures, lots of seizures. At night, in the day. Not the grand mal, dropping on the ground kind, but alot of twitching, jerking, out of it in the day. At night? Oh they are awful, stiffening, jerking, dang close to grand mal at night. Awful, horrible.
I am so very grateful that he is doing better in some ways, but how can I rejoice when I am worried sick? Have a call in the NP. Am anxiously awaiting the return call.

Thursday, September 07, 2006

Taa Daa!

Do you know how much I love and appreciate you? Here is the proof. Little Man has gone to his first day of school, (gratuitous inserting of picture here)*

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and instead of taking a shower or eating breakfast, (IHOP here I come!)I am sitting down to show you we are still alive and hmmm... not exactly well, but surviving anyway. The bus is still not figured out, but I guess my mini temper tantrum worked the other day, because the school got their act together quickly. Bald Man will take and I shall pick up. And inbetween? Oh my, the delicious sensation of hours stretch before me! What shall I do? Needle felt? Shop? Nap??? Read? Already updated the blog, so I can check that one off the list... I am not ready to decide yet, the incredible freedom of being able to choose unhindered by other obligations is just too, too delightful!
Little Man did not fall asleep until 11 last night. Not good, but not horrible either. Praying it goes a bit better tonight, but he did sleep until 10:30 yesterday, so maybe he wasn't tired? Ha, that is a dumb comment on my part, this is the child who has gone as long as 36 hours with no sleep, what in the world am I talking about? Who knows? God is the only one who knows, since the mystery of Little Man has yet to be penetrated by any puny human brain!
He was upset about going to school, but it wasn't major. Now he is off, with a new outfit, new backpack and new shoes he refused to wear so he is in his sandals that are falling apart.
*The truth behind the picture: He was not happy and was have a minor whinefest, "I don't want to go to school..whine, whine" But I said the magic word!...... Are you ready for this?......... FART! Instant smile. Hey, a moms gotta do, what a moms gotta do, to get at least the facade of a happy first day of school picture. But now you know... the rest of the story!

Wednesday, September 06, 2006

He Slept!

Little Man slept, Bald Man slept and your bloggy friend, Jo, slept too. We were the sleeping house last night. The Thorizine knocked Little Man's socks off and he was asleep within the hour after taking it. The falling asleep part was hard, being an anti psychotic it lowers the seizure threshold, so two Ativan later, Little Man had stopped seizing and was tucking into bed. I joined him for a good part of the night, he was a bit out of it and kept trying to get out of bed. But with me there, he just snuggled up and he and I enjoyed a VERY restful night. I woke up before he did and now he has joined Bald Man and they are both sawing logs. My tired boys. So today we breathe and see if it works again tonight. If it does, we have bought us some much needed time and an ability to readjust Little Man's meds to work better for him.
Little Man and I are going to be going to his new school today and visiting his new classroom. Depending on the paperwork status, he should be starting soon. I had to get really mad yesterday to make it happen, they were saying in a week or two! Pish Posh, how ridiculous to deny my child his schooling for their convenience!
Thank you for everything you have said. Each comment a treasure, and a comfort. Your words of wisdom, even while they bring tears to my eyes, are a balm to my hurting heart.
We shall see how this week plays out. Today though, today I am starting my day with a good nights sleep and today, the sun is shining, outside and in. Thank you.

Tuesday, September 05, 2006

Balanced on a Knife Edge

I wish I could say things were better. They are not. Our son's psychiatrist apologized for the mix up over the long weekend. The on call nurse is the one at fault for not getting us to the on call doctor. She apologized too, but that doesn't help.
Little Man only slept 3 hours again last night and we are quickly reaching the end of our ropes here. The last five nights have meant he has slept about 15 hours total in five days. His behavior during the day continues in multiple melt downs requiring restraint to keep him from hurting us. I have a fat lip from a head butt and he also kicked Oldest Son in the face on Sunday. He pushed our sweet little Pea down too.
The shrink is giving one more really ugly drug a try. It is called thorazine. It is a very old anti psychotic and we are praying it helps him sleep tonight. It has some ugly side effects and I am not happy we are at this point. But it is our last hope. If it doesn't work and he doesn't sleep tonight, they are going to do an an inpatient psych unit admit. It kills me to even have to type those words. Mentally I don't think it will be very good for him, he won't understand, he only functions about about a 3 year old level and he will be very traumatized from it. But medically there is nothing left to do that we can do at home. I know it, but it is still so tough to even be brought this close to having to do this to our boy. Liza asks if life has gotten worse or did I just cover better in the past. No Liza, things are much worse than they used to be. I gotta quit before I start crying, cause I just can't cope with thinking or talking about this anymore. Thank you for the remarks and kind emails. They are a strength to me in this terrible time in our lives.

Sunday, September 03, 2006

Our Holiday Weekend

Very nice. Little Man's shrink is unreachable and left no one on call. So this weekend, we are enjoying the Carnival of Insanity, brought to you courtesy of Little Man. There is the Tunnel of Sleeplessness. A fun ride, bumpy and the LONGEST ride you have ever been on in your life, as you wait for dawn to break so you can feel like you survived it. Friday night the child went to sleep at about 9:30, late, but doable. He was up at 12:30 FOR THE NIGHT! While Bald Man mostly handled him, I was awakened about 5 times during the night by their antics.
Then you have the Roller Coaster of Emotion. UP, DOWN, UP, DOWN. I don't what this medication is doing, but so far it is doing no good and a great deal of harm. He is fine, playing with his toys or on the computer. All is well, He is talking happily and seems quite sane. Then, something AWFUL happens. Like the phone rings, or perhaps the air conditioner switches on. I don't know, the triggers are invisible to the rest of us. Then the down part of the roller coaster starts. Speeding up to full tilt screaming and attacking. I can't tell you how many times the last few days I have gotten my hair pulled, bit, scratched etc. There is nothing to do but restrain him while he screams bloody murder about whatever. This morning it was about getting directions. He doesn't even know what he is talking about.
What I wanted to do this weekend: Go on a date with my husband. Nope.
Go to the Great Basin Fiber Arts Fair: So sorry, Charlie, no to that also.
Clean for Brown Boy's arrival: That happened, sort of. On Friday it took me ALL day to clean the two bathrooms. I finally got my shower and lunch at 5.
What I didn't want this weekend: To be depressed and tired beyond expression, YUP, you guessed it, in the Carnival of Insanity, this prize is as easy to get as those stupid goldfish in a regular carnival. Even better, TOMORROW is part of the weekend too. Yay, boo.
Hoping the rest of your weekends don't suck as bad as ours.

Friday, September 01, 2006

Sleep, Perchance to Dream...

Sleep that knits up the ravelled sleave of care
The death of each day's life, sore labour's bath
Balm of hurt minds, great nature's second course,
Chief nourisher in life's feast.
~William Shakespeare, Macbeth

Blessed wonderful night. I needed to sleep last night and I did. Although I fell asleep with worry on my mind, as I lay snuggled against my boy, his body jerking and jumping with small seizures. Bald Man takes the night shift, because he is able to sleep through Little Man's seizures, while I can not. So last night, I slept like the dead and woke up this morning with new vigor. Which is a good thing, because the hours between 7:30 and 11:45 have been fraught with many difficulties. Little Man woke up in a horrid state, screaming, sobbing, hitting, name calling. Agh. All I can say is I was able to be more patient than I would have been without a good night's rest. After his shower I was laying down with him, holding him while he was sobbing that Super Robot Monkey Team Hyper Force Go, his favorite show was not on today. Who is the stupid that changed the morning lineup on the Family channel?? Come here and I would gladly strangle you! But I realized he was seizing, small jumping muscle seizures all over his body. Two Ativan and he was calmer and the seizures had subsided. I can tell when his ADHD meds kick in, about 11:30, because he is finally not pestering me every two seconds. Now I can take my shower, (at 12:30) and maybe get some cleaning done in prep for Brown Boy's arrival this weekend. (Brown Boy, for those newbies is our oldest's, Pygmy Child's boyfriend who hails from Florida.)
Thanks for the good thoughts, prayers, human sacrifice done in our behalf for a good night's sleep, I can't tell you how much I needed it and it happened! Yay. Maybe my Condelezza curse is wearing off?