Monday, September 29, 2008

I'm still here...

... things are still just a little weird here right now.

It's taking M some time to pull back together from the disconnect he had about 10 days ago. I wonder if he's starting to react in more of an adult way to these episodes... When he was little, he would bounce back by the next day. But it took a full week after this last episode before it started to feel like M was on his way "back", and he'd begun to act like himself most of the time.

 Steph, did you ever work with adults with sz? Is that extended time to get over an acute episode common in adults?

Anyway, I haven't had much time at the computer so I haven't posted...

 I'll be back when things settle down a bit more.

Sunday, September 21, 2008

Don't blink

The past few days have been weird... 

A major episode like M went through on Thursday always really rocks my boat. I've been feeling a little panicky, and after being more involved again for the past few weeks, the pdoc has dropped out of sight again... which adds to my unsettled feeling.

I think the panic comes from realizing how close we often come to disaster... Maybe I feel some survivor's guilt too, that each time this happens M pulls back together and life goes on, and we haven't had to go through the hell that many other families of kids with serious mental illness go through.

It is scary sometimes though... Sometimes I feel as though I'm staring his illness down., standing up to it, trying to push it around, while at the same time knowing it's more powerful then I am.

If I'm going to keep up this charade though, I can't waver, or give in to the fear... I can't blink... I need to keep focused on doing what we've been doing for years, what seems to be working for M.

So Friday we got up and went on the field trip I'd scheduled before Thursday's episode. M was still a bit disconnected, but he managed. And as the day went on he seemed to be more and more "himself" again.
We visited an animal rescue facility just a few miles away.

R loved being there and wants to volunteer some time with them. I think it's a good idea... The director of the rescue went on and on about how capable she is, and so good with the animals... I think I'll look into her volunteering there on a regular basis.

Yesterday we had Special Olympics bowling, and M did ok... so we finished up the morning of bowling with lunch out.
Can you guess where we ate?

I've added the haldol back to M's daily meds... It's very hard to give it to him again, even at a low dose, after working for almost a year to taper and stop it. But the sz was throwing it's weight around last week, and I can't let that keep happening. Hopefully the low dose haldol will help enough for M to get by.

Thanks for all the good thoughts and prayers, they mean a lot to us and I know they help...

Thursday, September 18, 2008

holding on through the curves...

Remember this post?

It's the roller coaster one...

 I feel like that today. It's been an extremely long, difficult day.

I'm ready to take a break from the schizophrenia roller coaster... all the twists and turns are making me sick to my stomach.

Today started out ok... M had a decent morning, and a friend from the homeschool group stopped by with her kids to bring me some canning jars she no longer needed. I could tell that M was struggling while they were here, but he kept it together... only getting a little edgy once or twice.

It was after quiet time that all hell broke loose...

It was a nightmare of an afternoon, one of those days when... by anybody's standards... the kid should have been in the ER.

But I didn't take him (haha... as if I could have loaded him in the car and driven him 40 minutes on a highway!) or call for an ambulance. I was busy cleaning up the broken glass, and by the time I was done he was calm again and had reconnected.

Yeah, he broke a window... with his hand. But in a strange way I don't blame him. We took away one of his medications... a drug that, despite the nasty side effects, was really helping him.  And we gave him nothing to replace it. How fair is that? (How stupid is that?!) His symptoms have increased, and yet (for the most part) he's been managing to keep himself together. Everyone has a limit though, and he reached his today...

I emailed the pdoc this evening and told her I'd be adding back in the haldol on an as needed basis. Yes, it's causing the tardive dyskinesia... but there is nothing I can do about that. And it's not right to sacrifice M's today for a tomorrow that's uncertain at best. A tomorrow that... if he continues to be as symptomatic as he was today... may never come.

Schizophrenia is a mental illness, which doesn't directly (as far as I know) effect physical health much at all.

But it can still kill... and frequently does.

Keeping M connected is also keeping M safe from the symptoms of his illness... and that seems more important right now than a wiggly tongue.

Gosh I'm tired. I feel like I'm just rambling...

God was watching out for M today. Despite breaking a huge pane of glass with his bare hand he wasn't hurt... Just a couple of little scratches, he didn't even need a band-aid. It did take almost 5 hours to clean up the mess, but it's all done now and my boy's in bed and maybe even asleep.

I'm so glad today is over...

Tuesday, September 16, 2008

I guess I should post...

It's been a long, complicated week or so. I've sat down several times to post something here, and each time I write a little something, then get called away to do something else, and just never seem to get back to the post I started.

I'm really going to work on finishing this post though...

My birthday was nice. K, (dd#3) spent the weekend with us, and we went out for my birthday dinner on Sat. night. Unfortunately B (dd#2) couldn't make it, but except for missing her, it was a nice dinner and wonderful birthday.

 The animals were all fine after their grain eating/running around the neighborhood escapades... The vet eventually got here, checked them over and gave Tilly and Blaze medication to help through the shock (of all that grain) to their digestive system.  We watched them closely for a day or so, but Tucker was the only one who seemed "off", and he was back to normal by the second day.

I've been keeping very busy with the kids... M isn't doing as well as he was, I'm afraid. Around the end of August, I was finally able to completely stop the medication I've been tapering for months. He was ok for a week or so, but then seemed to destabilize, and things have been pretty dicey ever since.

Thankfully the pdoc has been a little more involved again lately, and I've talked to her a couple of times during the past week. That's the good news...

The bad news is that she doesn't seem to know what to do next. It's not that she's young or inexperienced... She's one of the top child psychiatrists in the area, and tends to take on (and stabilize) the most complicated kids. She told me again last night that she's never (in 30 years of practicing!) had a kid like M. It's been sobering to realize that we've tapered this medication that was helping him, trying to stop the progression of the TD (which hasn't gone away, by the way...), and now we have nothing to replace the med with, and no plan for how to get him back to a more stable place.

I guess it's really no different a reality than we've been living with for months, but I'm tired (stayed up 'til all hours talking to the pdoc) and the combination of that conversation with not getting enough sleep, just makes things seem worse somehow...

So I've been carefully structuring each day to help M get through them as easily as possible... and it does seem to be helping, but it's exhausting (and expensive!). On the weekend days especially, I've been making sure the whole day is structured (homeschooling is our structure for the weekdays)... with a mix of interesting activity, and time to unwind at home...but without much "just hanging around" time.  

Last weekend we visited the Olympic Training Center in Colorado Springs... It was an awesome field trip, that place is just amazing, and it was the perfect way to end our unit study on the Olympics...

M, R (in the black ring) and S...

The flame was lit during the time we were there because the Para-Olympic Games were going on.

The artwork there was stunning... this was one of my favorite pieces. 

This past weekend we toured the Celestial Seasoning Tea Factory... no pictures, I'm afraid... but it was fun too.

So that's what's up at Woodstone Prairie... Hopefully today will be an easy day with M, and I'll get some energy back. (And maybe even post semi-regularly for awhile!)

Thursday, September 11, 2008

At the risk of repeating myself (because I'm pretty sure I said this same thing, on this same blog, last year), September is my favorite month.

 It probably doesn't hurt that it's my birthday month. I can remember, as a child, waiting all year for the magic month of September to roll around.

But birthdays and presents aside, September also marks the beginning of Fall... my favorite season. So September also means warm soft sweaters, comfy thick socks, and maybe... if we're very lucky... an early snow.

I still look forward to September each year, but I also tend to get pensive this time of year. It's almost seems more like the beginning of the year to me then Jan. 1st.
 I do Fall cleaning, not spring cleaning.

I feel energized as the days start to cool, and spend inordinate amounts of time organizing the house, our homeschool, and anything else that happens to get in my way.

I finally got a picture of a hummingbird (mentioned in this post) the other day. I had the sprinkler set up in the back yard, and caught a glimpse of a tiny hummingbird enjoying the spray of water. Miraculously he stayed there long enough for me to run and get my camera.

It was amazing to watch him (her?) darting around the edges of the water, his wings moving too fast to see... cooling off and getting a drink... without getting washed away!

Happy Birthday, Bro!

 Today is my brother's birthday... I know he'd LOVE to have his xanga filled up with birthday wishes! So please head over here and wish him a happy birthday.

Just in case you missed the link, here it is again :)

Tuesday, September 2, 2008

Mama said there'd be days like this....

...there'd be days like this my Mama said.

Only really, I can't remember my Mama ever warning me about days like this.

She must not have guessed that I'd end up with livestock. (No I'm not even going to refer to them by their names today, the creatures living in my barn have been demoted to just livestock...) 

Warning: This is a whiny, cranky, feeling sorry for myself, post. If you're having a wonderful, happy morning and would like to read about happy, uplifting things, check out the blogs on my "Friends" blogroll... You'll undoubtedly like their blogs better than mine today.

First off... I'm still kind of sick. I got the cold from h*ll last week and struggled through two days of fevers, before getting to the sinus headache, endless cough stage. I'm much better now, but I'm still not feeling great... 

Unfortunately, M's got it now too. I can't tell you how miserable he can be when he's sick. He can't take cold medicine (interacts with his other meds) so he's been suffering through with nothing but Vicks, Vitamin C, and Advil (which he keeps forgetting the name of, and asking for more "Vitamin A").

Anyway, I was up with M most of last night. He coughed, he choked, he gagged, and eventually threw up (missing the toilet of course). He became convinced he was dying, couldn't breathe, couldn't walk, needed water, needed a hug, needed his music turned on, needed another blanket... It was a LOOOOOOOOOOONG night.

So I slept in a little this morning. I woke up at 6, and when Ti... I mean one of our barn livestock.... didn't start braying for food, I thought it was pretty cool that I was getting to laze around in bed for awhile. By 6:30 though, I knew I had to get up, feed the *livestock*, and get back into the house before M woke up.

I got dressed and headed out the door, curious to why the *livestock* was being so quiet. It only took about a spit second to see that they (probably "he", the biggest and orneriest of our livestock, the ringleader of the bunch) had gotten into the main part of the barn. I took off running down the trail to the barn, praying they hadn't gotten into the grain...

I rounded the corner into the barn and found hay (and manure) all over the floor. A quick peak into the feed room showed me they'd gotten the lids off the metal trash cans holding the grain and LOTS of grain was gone.

Our smaller equines (who still don't deserve names) ran out of the barn into their own pasture. Our large, ornery equine ran out the barn door to freedom.

Apparently there is nothing like a bellyful of grain to give a horse some energy, because it was the devil to catch him. I chased him all over our five acres, then finally woke up R  (and told her to get up and go catch her horse... how's that for a mean mother?!). and she chased him around for awhile.

To make a long story short, he eventually took off across the road, through the neighbors property, and up and over the hill.

R and I walked approximately two miles before breakfast.

But we caught him... (more specifically, R caught him... it appears she is the only one of us smarter than a horse)

It's 10:30 now and barn is finally cleaned back up, and locked up tight... Our *livestock* are in their own pasture, each with their halter on, waiting for the vet that was supposed to be here 90 minutes ago.
Luckily no one seems to be sick from their midnight feast... Everyone is pooping and (still!) grazing.

But I'm super cranky...

... the only really, really good thing is that M is STILL asleep. (Which tells you how sick he is!) R and I ran all over the neighborhood catching our escapee, then spent another hour cleaning the barn and getting the halters on, and M slept through it.

Grumble, grumble, I hope the vet gets here soon...