I was just starting to write, when oldest boy comes out with a handwritten note from his younger brother, Aramis: "mom im hungry"

Okay, so the boy can write....it's still freakishly early, and although his note is cute as a button, I know he's sitting there with a cup of dad's famous hot chocolate. He will live a few more minutes......but I have to admit: I love it when I get notes. I find them tucked under my keyboard with little quips of appreciation, other times, they are hand delivered, with adorable misspellings, and are gentle requests from five feet away. 

For a number of reason, schizophrenia just being one of them, we have a rather regular schedule. Things have to be that way......and life moves rather peacefully along if we maintain it. So, the note is merely a reminder of what the next "event" is......which is cool, as it means that his mind is working better this morning. 

We were able to get into the psychiatrist yesterday on an emergency basis. He said that it was absolutely perfect that I did research and took myself off Saphris. However, I didn't feel comfortable making the same decision for Aramis, so hence the appointment. He immediately took him off Saphris, said we both hit too many of the "bad" side effects, and that Aramis was in the midst of pure psychosis. Yeup, thought so, but to be honest, I'm starting to get very familiar with this. 

He's now on Seroguel....yes, "the one" we were trying to avoid. But, hopefully, as long as he gets exercise and eats very well, he can avoid the diabetes and weight gain issues connected to the drug. What we cannot avoid is the involuntary body movements that accompany the drug.....which, unfortunately are permanent. I'm to "watch" for these.....but the reality is that they accompany almost all the drugs used to treat schizophrenia. 

Also: he'll be sleepy....so make sure he gets 12 hours of sleep. Hmmmm, tell that to the boy who wakes up every morning at 6am. This medicine takes 3 hours to put him to sleep, he can't have a full meal within the approximate time of taking it, and......well, anyone who has been down the drug road before knows there's an entire host of rules and guidelines to follow. Especially when it comes to children. I have to take him from 50mg to 150mg in 7 days. Woah....that's a jump, while watching the entire time. 

THIS is why the psychiatrist says home schooling, as the medicinal phases really put a crimp in educational plans for weeks at a time. But at this point, the psychiatrist looked at his homework samples, and I'll be darned, he almost started crying. Just kept apologizing, and replying that he was trying to keep Aramis on the most gentle of drugs first. Now: it's the real deal drugs, so let's see what the drug-roulette table brings us. 

Aramis, sweet little man that he is, said: "You don't have to say your sorry.....you just don't. But please don't give me a medicine that won't let me wake up to have my morning time with dad....he makes me hot cocoa, and we visit together. Don't change that....but take the voices and the spots and the stuff in my head away." 

Still:  the psychiatrist was very sorry indeed, and explained it to him the best he could. Saphris worked for about two weeks, then Blam! The psychosis came back, up the dosage, two weeks later Blam! The psychosis returns......hey, it's almost like a dance. 

I had reached the end of my rope last night.....that's it. I'm done, finished, finito.........husband received some bad news from another quarter, I couldn't find the pharmacy per his instructions, and it was hot outside. Oh, and Dante decided to start arguing about everything......and that was it. I'm done.....I took the boys for a walk after supper jus tto get some fresh air and calm down. Exercise is so very good for the psyche. 

Husband was a sweetheart though, solved a few problems, I handled Dante, Aramis got his new medicine in, we adapted to the new medicine routine, which changed other routines, and then the day was FINALLY done. 

Husband spent some time with me later last night out on our balcony, and we had a delightful time. He asked if we should make a regular date for "Whine Mondays"......so that we have one day where it's just the two of us, and we both get heard? Yeah.....it was nice, and is a great idea. So.....we now have "Whine Mondays" to look forward too.

Husband was notified that the next job is in Canada....but then the company remembered that he is one of "the guys" who travels with his family, and they don't send families across the border.....so, it will be another job. No clue yet, but we'll find out soon enough. Too bad about the Canada job, it was a huge one focused on an aquarium, and husband likes those. 

However, as usual, on the flip side: aquariums have the most problems.......can you imagine the pre-checks for leakages? They happen, and they leak, and heads roll.....and repairs are made, and basically the whole routine repeats over and over until they are sure that the special little fishy can't get out, and the visitor won't get wet. 

The last aquarium he worked on had a polar bear on one side of the glass, and sea otters on the other. Hmmmm, isn't that like a window display of bakery items just tempting you to find a way to bring that perfectly gorgeous chocolate cake home to devour? Well, it was the zoo's plan, including a walkway for people to watch the sea otters be terrified, while the Polar Bear circles and stares at snacks he can't get too. 

On another branch of subject: Aramis has lost both short term memory and fine motor coordination. Well, the short term memory may return with the change in medications. The fine motor.......hmmm, well, we're back to working with play dough and more clay. I have a few things lined up to work on those fingers (which incidentally can manipulate the PS3 keyboard just fine!!!) but can't hold a pencil or a fork very well anymore. Pencil? I'd think behavioral issue, but fork? Nope....too much motivation for for behavioral issues to be a component. 

The psychiatrist asked what "we" would do as far as finding another drug for me instead of Saphris? I was adamant....more so than I even realized. Nope, leave me alone with my three meds already, and I'll be happy. Minus the facial twitches that I hope are not permanent as the bottle says they can be. Nope......don't mess with what's working please. 

The doctor did say that he needs to do a lot of pschological testing with Aramis, and has some very talented doctors already lined up to do so, but until the psychosis is addressed, we can't proceed. So, another step in the progress of the treatment for schizophrenia. Apparently there are medications, but you "have to find the right one". Oh goody......but, it's far better than doing nothing at all, as gray matter is lost with every passing day. An MRI will probably be scheduled at some near point to determine the damage that has already been done. Until then: we need to find a magic pill for the psychosis. 

Ugggh.......but when I feel like this, I always try to remind myself that it's much more difficult for Aramis than it is for me. I'm an adult, and I have far more strength and comprehension than he does. So, try to remember that he is facing this from an entirely different perspective. 

As Aramis will be asleep most of the day adjusting to his new med, it's home schooling for Sir Argument. Now: this child really, really needs to become a lawyer. Really.......

Me? I'm "fine", and we all know what that means!!! But for now, I'll get another cuppa with the fantastic creamer that husband brought home, and feed my baby sparrows who dropped their bread on the ground. They're lined up again.......squeaking and squawking to no end. 

Hey! Two red cardinals came to the feeder yesterday! That was a treat.......so more bread to go along with the bird seed that the babies seem to not prefer yet. 

I just may be able to accomplish a few more chapters of my second book, if all goes well today. Aramis is highly emotional so far today.....we we'll see. 


Have a wonderful day everyone....may it be peaceful, warm and safe.......



Shelly
 


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    Shelly Dowen-Johnson

    I am currently traveling with my husband across the United States, due to the nature of the work he does. 

    I am the mother of two boys, one who has recently been diagnosed with Early Onset Childhood Schizophrenia (Schizoaffective Disorder). 

    It appears the Dowen family gene sequencing contributes much more than the darling dimples both boys have inherited!  But, as always, with love, tender care and support....we will thrive! 

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