Wednesday, November 29, 2006

It's a gorgeous day here... It started snowing last night and the snow is still softly falling. 

We seem to get a lot of pretty wild snow storms, where the wind blows the snow sideways, and by the time the storm is over there are places where the wind has swept the ground completely clean, and places where the snow is drifted up to our knees (thighs, and sometimes even hips!). 

This isn't one of those snows though. The wind isn't howling down the chimney... the flakes are fine and gently falling, covering everything with that wonderful snow-muffled kind of quiet.

The kids were outside playing earlier... It was very cold (maybe 10 degrees?) but they bundled up well and by the time they came in they were cold, happy, tired, and ready for some hot chocolate.

It was nice to see M playing outside with R... He isn't always well enough to play. (In fact, it's pretty rare for him to be able to really play for any length of time. Until his schizophrenia I didn't realize what a wonderful blessing just being able to play is...) We've been making some medication adjustments and for awhile seemed to be seeing some good coming from them. He'd been calmer and having more good days than bad (which is a switch!), but he's been struggling more to manage any change in routine. Something as simple as having someone visit has been enough to throw him off. Thanksgiving was very difficult for him. Having everyone home ended up being more than he could manage... 

It's always so sad for me when his illness prevents him from enjoying a holiday, or even just connecting with his siblings. Schizophrenia is a cruel disease in so many ways.

M's been having more physical side effects lately, so some of the med adjustments are trying to balance what he has to take to be fairly stable, with lowering the medication enough to hopefully decrease the side effects. His speech is already permanently impaired as a result of side effects to lithium (which he no longer takes), and in the past he had swallowing problems that were (probably) connected to the haldol he takes. The swallowing problems went away for awhile, but they seem to be back again now. Sometimes he feels like he can't breathe, he coughs a lot, and he's having a lot of trouble swallowing (on Thanksgiving it was bad enough that he ended up just eating soft food for dinner... ). The pdoc says it might be TD (tardive dyskinesia) symptoms and we need to lower the haldol, if possible. The past couple of days I've tried to lower it... but he's destabilized. So.... this is starting to look like one of those problems with no good solution. 

For now we've increased his side effect medication, hopefully it will take care of things until we figure out what to do...

I'll close with a couple of deer pictures... R saw these two bucks from her bedroom window. They were acting very strange, so we stopped to watch them for awhile (and take pictures, of course!). They are two mature bucks, and seemed to be following each other around a large patch of scrub oak. There didn't seem to be any aggression between them... they just followed each other around and around that bush. The buck in front periodically pulled his lips back and made this strange hissing kind of noise. (In the first picture you can see him doing it.). 

Eventually they stopped circling... moved up the hill, over the fence and were gone...

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Friday, November 24, 2006

family pics (Thanksgiving 2006)

It can be very hard to get our whole family (all 5 kids and grandkids) together, so we don't have any recent pictures of all of us together. I decided that Thanksgiving was the perfect time for a family picture (and I wouldn't let them eat until the picture was taken... good motivator!) So here's the whole family...

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Back row is dh, B, K (both in college) M and I, front row is E holding the grandkids (both were sick yesterday, and not in the mood for a smile) and R. ~ 

And we couldn't take a family picture without getting silly, of course... ~ 

LOL, no sibling rivalry in THIS family!!

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Monday, November 20, 2006

thankfulness...

This is an old favorite of mine, and I thought Thanksgiving week was a good time to post it (again) on my blog...
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
I Am Thankful
By Nancy H.
~
For the husband who is on the sofa being a couch potato.
Because he's home with me and not out in bars.
~
For the dog barking to come in because it means
I can hear, and that I have a faithful friend.
~
For the cat leaving hair in my lap, because it means
I have another faithful friend.
~
For the mess to clean after a party,
because it means I have been surrounded by friends.
~
For the clothes that fit a little too snug,
because it means I have enough to eat.
~
For my shadow that watches me work,
because it means I'm out in the sunshine.
~
For a yard that needs tending, windows that need cleaning
and gutters that need fixing, because it means I have a home.
~
For all the complaining I hear about the government,
because it means we have freedom of speech.
~
For the parking spot I find at the far end of the parking lot,
because it means I'm capable of walking and I've been
blessed with transportation.
~
For my heating bill, because it means I'm warm.
~
For the pile of laundry, because it means I have clothes to wear.
~
For weariness and aching muscles at the end of the day,
because it means I have been capable of working hard.
~
For the dog waking me up in the early morning hours to go out
to wee, because it means that I am alive.
~
And finally- for too much email,
because it means I have friends who are thinking of me!

Sunday, November 19, 2006

quiet weekend

...at least so far. (I kind of hate to even say things like that because I know how quickly the situation can change!)

M seems to be settling down again, after some really difficult weeks. He's had a couple of good days in a row and the lack of tension in the house has been wonderful! He's still unsettled and difficult during the late afternoon/evening but that's a small price to pay for calm hours during the middle of the day.

He and R went out exploring (in the back pasture) yesterday afternoon. This is the first time in a couple of weeks that M has been well enough to actually play... They outfitted themselves with water bottles, baggies of trail mix, hiking boots (M) and a metal detector. (Yes, we only have 5 acres... but they believe in being prepared!) They came home about 30 minutes later with their "treasures"... several pieces of tangled up rusted wire, one white plastic cap (from an electric fence) and a golf ball. They seemed pretty happy with their finds and happily shared the wire with dh. LOL, they are just sure he will need it for something.

With M doing well enough to enjoy being outside, I'm looking forward to starting our nature journaling again. We put it aside a couple of months ago when M was so ill (psychiatrically) that it was very difficult to get him to go outside (except to walk to the car, luckily he doesn't often refuse to go places in the car). R has journaled once or twice since then, but it will be very nice if we can add that part of our homeschooling back in, I've really missed it.
~
Our Civil War unit study is going slow... 


We lost a week or so because M was just too unstable to do anything, but we've gotten started again now and it seems to be coming together pretty well. We did an "overview" of the war, when and where it took place, what it was about, etc. Now we are focusing on several historical figures from that time, and learning more in-depth information about them. Our lap books seem to be taking the form of "satchels" (carpet bags?)... I didn't plan this, it's just kind of the way the information is organizing itself. They are pretty cool... When we're done I'll make a page here showing them, and listing the materials we used for this unit study (like I did for our solar system unit study).

For those people who have commented asking about a certain family member's nudist tendencies... she seems to be in recovery. There was only one incident while she was here, but our "landscape" of sharp, dry, prairie grasses, yucca, and cactus kept it relatively short-lived. (She did take the precaution of wearing mudboots, but they seriously hampered her dancing ability) Thankfully our neighbors are far enough away that I was able to get her back inside before the police were called...

Thursday, November 16, 2006

We're still here, but it's been a roller coaster of a couple of weeks... 

My ds was here for a very short, but nice, visit earlier this week. She only stayed a couple of days but it was so nice to have her here. She has spent enough time with us over the years that she just jumps in with the kids, helping when it's needed and not waiting to be asked, and understanding that M needs the kind of help you would normally give a much younger child (cutting his food for example, and holding his hand crossing the street). I was sad she couldn't stay longer but SOMEDAY, when M is stable enough for the drive, we'll head east to visit her. 

I've been missing the road trips the kids and I used to take, visiting her in her big old house (with the sparkling new kitchen... that I've never seen!) and heading over to the Emma Chase on Wednesday nights for burgers. 

It doesn't look like we'll be heading east for a visit any time soon though... M is still very unstable and just getting the hour into Denver to see his pdoc is difficult these days. I spent most of last weekend "talking" (via email) with her about the situation. She's still making suggestions for medication changes that MIGHT help (but it's very unlikely). I've been feeling like enough is enough, we've come as far as we're going to with the meds, let's just accept that and figure out how to live with the situation as it is. She doesn't agree. She has agreed to let me start tapering his mood stabilizer (that may be doing a little, or nothing, or making things worse!). So we'll see if that helps. 

I've agreed to meet with the pdoc in town that does ECT, to get his feedback. M's pdoc is going to set the appointment up. I'd like her to come too, but I'm guessing it's unlikely...

School is getting done most days... This latest rough spell has set M back cognitively, but he's still cooperative and trying which is nice. R is also still plugging away at schoolwork (although she'd really rather be outside!) Our school time is a nice "organizing" part of what often seems to be pretty chaotic days. 

As part of the homeschool Halloween party, they kids paraded in costume through a nursing home nearby. The residents had cards for the kids, and the cards included the name of a resident and their address, so the kids could write to them. M and R wrote right away, sending letters and pictures they drew. We may not hear back from their "penpals" (this nursing home has an alzheimer's unit, so many of the residents aren't likely to write back) but we're going to keep sending cards, letters and pictures. The kids love the idea of sending them, and it's nice to think of sending a little surprise to someone who may not have young kids in their life.

  We've been keeping busy around the house as well. I finished the last little bit of painting on the exterior of the house and barn, and got things cleaned up a little. We were running very low on firewood so we called and had a cord of wood delivered last Saturday. The man who delivered it knew the house immediately. Rather than an address, I could have just told him to go to Ann and Carl's house! (Ann and Carl built the house) 

Well... the sun's coming up so I need to get moving.

Thursday, November 2, 2006

thank you

....for the prayers and good thoughts, I think the situation has turned around now and it looks like M will be fine.

We spent yesterday checking and rechecking M's white count... His pdoc had talked to the people at the National Registry (because clozaril has the potentially fatal side effect of dropping the white count, it is carefully monitored by this agency and can only be prescribed in certain situations and under certain conditions). She was told that if we had a normal CBC within 48 hours of stopping the medication we could start it again with lots of follow up CBC's. 

So I drew M's blood twice yesterday and around dinnertime we got the good news that his white count is back up in the normal range, and since it had not been 48 hours since we stopped it, I could restart it again. (Had it been more than 48 hours we would have had to very slowly increase the medication as we did when he first started taking it. It's a months long process to get it to a therapeutic level.) 

We don't know why his white count was apparently so low on Monday... I had a hematology doc check the specimen I sent in and he said it was fine... no clots, and there were none of the other possible reasons for it to drop. There is also no clear (medical) reason why it would have popped back up so quickly... I'm taking it as another miracle in this child's life. 

He had a rough day off and on yesterday, I could already see a change in him without his medication. The pdoc was talking about ways to keep him sedated during the time he was without the clozaril, and things were looking pretty grim. Getting the news last night that his white count was back up was an incredible relief... 

It's funny how good "normal" looks (even a normal as strange as ours!) after coming so close to it being gone. M should be back to normal within a few days to a week... He'll need more frequent (every few days) CBCs for awhile, but that's not a problem. Our children's hospital has very generously provided us with a courier service to the hospital. So I just have to draw the blood, call the courier, and it's picked up at the house and taken into Denver. They've made it very easy for us...

  THANK YOU again for all the prayers, good thoughts and supportive comments.... They mean so much to me.

Wednesday, November 1, 2006

prayers

We've had a crisis with M, and I would really appreciate it if you could keep M in your prayers...

 Here is what is happening... 

The main medication M takes for his schizophrenia (clozaril) can have the side effect of dropping his white count dramatically. This side effect doesn't happen often, but can be fatal... this is why I have to draw M's blood every week or two for a CBC. In the three + years he's been taking this med, his white count has been fine... but I found out yesterday evening that the blood draw I did on Monday showed it had dropped seriously. 

His pdoc called last night and said I had to stop the medication...

You're probably wondering why I would give him such a potentially dangerous drug. It's because it's the only one that seems to work with treatment resistant schizophrenia. It's referred to as the "gold standard" in terms of meds for treatment resistant schizophrenia.

  So I've had to stop it, abruptly, and who knows how much M is going to disconnect as a result. In the past when I've decreased that med too much he loses touch with reality (not immediately, it's a gradual process) which is incredibly painful for him. I'll have to draw his blood at least twice a week for awhile, so his doc can watch for his white count to (hopefully) rise again. Legally she can't start the medication again until it's reached a certain point for a certain period of time. (That's if we decide to use it again...)

 That's the situation... I'll keep you posted if anything changes, but until it does we'd really appreciate your prayers.