Saturday, October 28, 2006

frustrations

M's pdoc just called... She's full of ideas for helping him to be more stable AND not be buried under side effects. I think she's wonderful, and I'm glad that she wants so much for M to be better. But I'm also so frustrated trying to communicate with her... 

Sometimes I think we aren't speaking the same language. She's been seeing the kids every week for a while now, and usually she tells me how good M looks. It doesn't matter if he's tearing the house apart at home, and I can't take him out in public because he's so unpredictable... He looks good to her. 

After feeling frustrated that she didn't seem to be seeing what I see, I finally decided maybe she is right. For someone who is developmentally delayed and has severe schizophrenia which hasn't been responsive to treatment, he's doing fine. I decided that maybe my expectations are just too high... that this is "normal" for someone with his unique challenges. 

So I told the pdoc that. I said M was fine, I'm glad he looks good to her, and I'm going to work on adjusting my expectations to more manageable levels. 

Her response? 

He really doesn't look that good. She's concerned about him and thinks we need to make major med changes, ones that would require him to be hospitalized (in the psych unit of course) for an extended period of time. Sometimes I just can't win for losing... 

She wanted to talk tonight about hospitalizing him to make these major med changes. We would be slowly reducing the only medication that is known to be helpful with treatment resistant schizophrenia and replacing it with another antipsychotic (one that he's taken several times in the past with only marginal success). 

Why would she think this is a reasonable option? While tapering his clozaril the hallucinations would increase, he would lose insight into them and start believing that what he was seeing and hearing was real. He would become very frightened of the scary ones, and possibly panic and try to run away from them. He might also get aggressive and volatile if the voices told him to do something and in his compromised state of mind, he did it. (They often threaten to kill him if he doesn't do what they say... that's why insight is so important!) He would be in terrible mental pain, possibly banging his head or wanting to die to quiet the voices. I know this is what it would be like because we've tapered that med before and this is what happened. 

I think, as a physician, his pdoc is focused on "fixing" (curing?) M. That's what doctors do... they make people better. But some people with schizophrenia don't get better... their illness is not responsive to meds, or only partially responsive. M is one of those people. 

Rather than put him through hell trying a medication that we've already tried, one that hasn't done enough... Why not accept him as he is, and try to help us all live with the reality of life with schizophrenia?! 

I know she means well. I know she cares about him and is doing the best she can. I just wish she could forget she's a doctor for a little while, and think about things from M's point of view.

Friday, October 27, 2006

after the storm

Be patient with me...these will be the last snow pics for awhile. I promise. It's just too pretty outside not to share! I love the way the wind sculpted the snow, leaving bare patches mixed in with almost gravity defying waves of snow.

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  We are still snowed in, dh only got enough of the driveway plowed for him to get out to work this morning. He did get the heat back on last night, so I won't need to spend the day feeding the fire. 

The goats were very stressed out yesterday (especially Betty, who was born in March and probably doesn't remember snow). They cried, tried to follow us into the house (bounding over the drifts... they are surprising good in the snow!) and just generally let us know they weren't happy about all the snow. We went out several times to check on them and bring them treats, and they are back to normal today. 

M enjoyed being snowed in yesterday, but woke up this morning in a panic about not being able to get out (to go to town). After a very rough half hour or so he calmed down, napped a little and seems better now. 

R has already been out to play a couple of times... nothing slows her down, she loves it outside whatever the weather! 

Thursday, October 26, 2006

Wish you were here...

We're snowed in today... 

It started snowing during the night, and it's been snowing hard since then. The wind is blowing the snow sideways, and the drifts are up to my knees. 

I don't mind being snowed in, although I think more than a day or two at a time would set me over the edge... 

This post for for my family and friends who would probably enjoy the experience of being snowed in.. the smell of the woodsmoke, and the silence of the snow falling... silence broken only by the wind as it comes down the chimney. 

There is stew bubbling in the crockpot and later this afternoon I'll make some bread to go with it. 

~ I love storms like this... I'm not sure if it's technically a blizzard, but I can't see past the end of the driveway and it sure looks like a blizzard to me! 

The pilot light on the boiler went out last night (we have hot water heat, no furnace) and until dh can replace the thermocoupling we're heating the house with wood. He'll probably be able to get the hot water heat going again this evening, but until then I'm feeding the fire. 

It's such a blessing to be able to keep the house warm, even during a major storm, with wood. It's kind of a secure feeling somehow... 

Here are some pics I took today... enjoy! (or count your blessings!) ~ 10-06-003.jpg

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Friday, October 20, 2006

this week

The house is quiet right now... M's asleep and R's playing outside... so I thought I'd try to steal enough time to write. 

Nothing exciting is going on here, but that in itself is a blessing! M has settled down again and most days things are pretty manageable. The pdoc hasn't mentioned ECT for a couple of weeks, since things have gotten better it's looking like we may not have to make the decision after all... 

I got a phone call the other evening from the man we bought our goat Rose from. He has a little 12 acre farm a few miles from us and keeps every kind of farm animal you can imagine. He had sheep, goats, llamas, donkeys, chickens, ducks, pheasants, miniature horses and more! We've visited him several times since we bought Rose and the kids always enjoy wandering around his pasture, looking at all the animals. 

So Al called the other evening to invite us over to see the newborn llama and goats he had. The baby llama is just beautiful... he's black and white, and has the sweetest face... The goats were only a few hours old and R would have spent all evening in the barn just holding one of the newborn kids... The little buckling she was holding still had his cord attached and M and R were a little surprised... They had never thought about animals having belly buttons! I think we'll probably go back this weekend so R can play with the babies before they get too big! 

 The kids have almost finished up their solar system unit and their lapbooks. We have had so much fun doing this, as soon as the finish the books up I'll take some pictures and show you what we did. M has picked the next topic we're going to do a unit study on... the Civil War. I love history so this should also be a fun and interesting unit study. I've been amazed at how working on the lapbooks has kept the kids interested and engaged, and how much fun we've had putting them together! 

Better go get something done....

Saturday, October 14, 2006

Catchin' up

This past couple of weeks has been a blur of running errands, trying to keep up with the kids, and fitting everything else (like dinner, laundry, school, etc.) in spare minutes here and there...

In addition we celebrated two birthdays this past week. DD#3 turned 19, and R is turning 10 today!

Unfortunately, M has continued to be very unstable and has been having hours and hours each day of needing constant, hand's on attention. Most of the time it feels a little like I have a really big toddler in the house. He's moving constantly, getting into things, and the only time I can relax is when he's asleep.

I'm still waiting for information from the pdoc about what she found out from the other pdocs about ECT. The longer this current unstable spell continues, the more "normal" it seems, and less of an emergency... and I'm feeling less and less open to the idea of ECT.

 I had my grandkids for the day both yesterday and Thursday, and although things got a little crazy, I really enjoyed having them here.

DGD is almost 4 now and just a sweet and smart little girl. She and R play beautifully together and seem to have so much fun with each other... it's wonderful to see how close they are.

DGS is just 2 and is still pretty happy just to hang out with grandma most of the time. He has been diagnosed with aphasia (he isn't able to speak... he understands what is said to him, but isn't able to form intelligible words, at least not yet) and speaks in sign language. I understand most of his signs and we do fine most of the time, but once in a while he comes up with a sign I don't know...

Yesterday he had just finished a piece of my homemade bread with a little honey on it, when he started making a sign I didn't know. His pointer and little fingers were up, and his thumb was sticking out. I didn't know what he wanted, but he seemed pretty insistent, so I asked DGD what he was saying. She thought he was telling me he loved me (it looked almost like the sign for "I love you") so I told him I loved him too, but he was still very insistent about what he was trying to say. Finally the light bulb clicked on in my head and I asked him if his fingers were sticky. With relief he nodded his head yes and I washed his sticky fingers (his pointer finger, thumb and pinkie)

Sigh... poor baby, talk about grandma missing the obvious!

We celebrated R's birthday yesterday and she had a wonderful time. We invited a bunch of her friends for a swimming party at the town (indoor) pool and then came to the house afterwards for pizza, presents and cake.

It was a beautiful day, and R was so excited about her birthday and having her friends over. M was calm through the whole party and I think everyone had a great time. (R said later that it was her best birthday ever!)

We didn't get much school done this week... I'm SO looking forward to getting back into our regular routine next week. It's funny how good sitting down to do school sounds, after all the running we've been doing lately!

Friday, October 6, 2006

mental health break

I got up yesterday morning and decided that we needed a change of scene. 

In the old days when would I get that feeling, I'd pack the kids in the car, grab the credit card, and take a "field trip". 

We used to take the most awesome field trips... Mesa Verde, Four Corners, the Great Sand Dunes, Mt. Rushmore, the Badlands...we traveled all over the Colorado, Wyoming, Kansas, Nebraska area and had so much fun. 

Twice we drove over to Chimney Rock in Nebraska and followed the Oregon Trail west... 

It's been a couple of years since we've taken one of those wonderful field trips... it's been that long since M has been stable enough to take that far from home. 

So... since I couldn't load the kids in the car for a road trip, we decided to head down to Colorado Springs. There is a lot of cool stuff to do down there... there are cliff dwellings, lots of museums, Pikes Peak, and a lot of really beautiful places in the mountains just west of town. 

This wasn't an "educational" trip though, we just wanted to have some (cheap) fun. We ended up at Focus on the Family's children's area. I don't agree with Focus on the Family's political views, but they have a nice children's area and it's free... 

The kids played for an hour or so, then we had lunch at the little malt shop they have there. The kids had a great time, and it was nice to be able to forget about M's mental illness for awhile. 

Here are some pics... Here's M and his buddy after putting on a puppet show for me...

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and R and M doing a show in the stage (they could watch themselves on moniters mounted just above the stage!)

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R coming out of their huge slide (it's three stories tall!), she was a little afraid to try the slide at first but ended up going down over and over again!! (for some reason this picture was deleted... sorry) 

 We finished up with lunch in the malt shop (and a shake to eat on the way home) *********************************************

 I spoke to M's pdoc the other night and asked her to talk about M's situation with the only pdoc in the area who does ECT with children. I also asked her to talk to one of her colleagues, who specializes in childhood psychotic disorders, about the advisability of trying ECT. We haven't decided that it's something we want to try, but I think it's something it's time to learn more about. 

My understanding is that the biggest problem with ECT is that it can wipe out memory... (sometimes the memories come back over time, sometimes they don't...) The testing we recently had done with M showed that he has virtually no working memory at all any more, which makes the memory loss from ECT seem like less of a problem it might be for someone who doesn't already have that problem... 

 Lots to think about.

Thursday, October 5, 2006

Hard Decision (ECT)

Over the past few days M has gotten much worse. He is fairly calm and connected at times, but at other times he very volatile and difficult to manage. The pdoc has suggested ECT (electroconvulsive therapy) again, and I am considering it this time.

Please keep M in your prayers...

Monday, October 2, 2006

I haven't been blogging much lately... I've been busy with other writing kinds of projects, and have had little time left to write just for fun!

Now that the painters are finished with the house, the last of the exterior work on the house is done. (except for a little painting that I need to do) It's a very good feeling, but it's also made me think more about how we ended up spending so much time and money fixing up a house that wasn't supposed to need any fixing up.

I have to confess I've been feeling pretty angry about it, and as though the people who lied to us (the seller) and didn't do their job (the inspection company) should be held accountable in some way.

So I've been working on a letter to the owner of the inspection company, letting him know that I'm prepared to "go public" about his company... and that I'm prepared to inform other potential home buyers about (his) unscrupulous home inspection companies. I need to let my FIL (who's also our attorney) read the letter and make there is nothing in it that can get me in trouble and then I'll send it out today.

I've also been working on the reams of paperwork that is required to even start the process of getting M qualified for developmental disability services. I hate this kind of paperwork, trying to figure out how to answer the questions (on just a few narrow little lines!) giving them a sense of just how disabled M is, without feeling completely disloyal for sharing things with others that really feel like private family issues.

The kids and I have been having so much fun with our Solar System unit study. I'll post some pictures soon so you can see what we've been doing... We've loved making the lapbooks, what a wonderful way to organize information, reinforce learning, and get creative at the same time! I think we'll probably finish up this unit study this week or the early part of next week, and I'm already planning the next one!

In my "spare time" (hahahaha) I've been working on writing the story of our experiences over the past couple of years. Since deciding to move, finding this house (and discovering all it's problems!) our lives have been full of one miracle after another. Just when we would think a situation is impossible, a door would open up and things would work out. I am humbled when I think of all the people who worked to help us put this house back together again... and I've decided I need to get it all down on paper, before I start to forget all the miracles that brought us to this point.

So that's our quick update... see you soon!