Thursday, September 29, 2011

When the going gets tough...

-the tough get painting.

-or the painting gets tough.

-or the tough paint compulsively.

...or something like that.

We are hanging in there... M's gut is still checked out to who-knows-where, but he felt a bit better yesterday which was good. We had a stomach/bowel x-ray done on Tuesday and there doesn't seem to be an impaction... his gut is just sleeping. It's stopped moving (mostly) as though there is a blockage, but there isn't one. So, thankfully, he's not in the hospital... we're managing things at home and hoping his gut stops being so lazy very soon and starts working again!

But back to painting :)

My "barn art" is finished and wasn't nearly as difficult as I thought it would be.  I had my design sketched out on a (roughly) scale drawing of the barn I did on graph paper. That gave me a good idea of size, spacing, etc. I took my drawing, the tape measure, and some chalk out to the barn and since it was a simple design it was easy to draw up on the barn doors.  I did the painting freehand, except for the little pupils in the eyes... I made a stencil for those. The painting didn't take long at all, despite it needing three coats of white to cover the red.

Honestly the hardest parts were the first brush stroke of white on those huge, still pristine, red barn doors... and keeping the secret from Joe until it was done. (Luckily Joe isn't very observant and apparently looks at the barn only rarely... so he had no clue what I was doing until he saw the finished product.)

Here's how it turned out...

I may go back out and make the eye pupils a little bigger, but overall I'm happy with my work. It cost nothing but time, and it was wonderful to be working outside... feeling the sun and the soft breeze against my skin, smelling the good barn smells of hay, animals and manure, watching the hawks circle lazily above the pasture... after spending so much time lately taking care of M. I don't mind all the care he needs... keeping a schedule for pain meds, hooking him up to the CPM and then unhooking him, keeping the little ice pack machine filled with ice and on his hip, helping with bathing, getting things for him, helping him work on moving around safely on crutches... I really don't mind any of that. But it was a lovely refreshing change to get outside and have the focus of my thoughts switch from caregiving to the simplicity of cutting a sharp line with the paintbrush, and making sure the eyes I'm painting are roughly symmetrical.

I'm a bit sad my little barn painting is done now... but maybe I'll start planning a bit of barn art for the other side of the barn. :)

Tuesday, September 27, 2011

What now?

It's been one week since M's surgery.  (And it's been one week since I had more than a couple hours of sleep in a row, so please excuse any whininess on my part...)

I'm worried about his recovery...

His GI system is NOT right... it's not even close. It seems that his belly can hold about 48 hours worth of food before deciding it's time to violently get rid of it. The lower part of his GI system seems to have checked out completely... working only when I load M up with super sized amounts of GI meds. (And even then not working much...)

M was very sick again last night, so as soon as offices start to open, I'll need to start calling docs... probably starting with the pediatrician. I'm hoping we can go in for an x-ray (to check for blockages in his bowel) and then come back home again. I really REALLY don't want him readmitted.

Poor R... this is totally feeding into all the fears she had before the surgery. She has phobias connected to both vomit and hospitals... She was so afraid that this surgery would turn out like last time... with in and out hospitalizations, and M vomiting for months. It's about 45 degress outside right now, but R is sitting out on the back porch to eat her breakfast... that's how stressed she is about being in the house after M was so sick last night and this morning.

And poor M! He too was worried about this surgery... he's the one who lost 20 lbs after the last surgery and suffered through months of stomach pain, medication induced diarrhea, and the indignity of (seemingly) the whole world talking about his bowel habits.

He fell last night on the tile floor... his newly repaired hip was VERY unhappy about the fall and has been terribly sore since. Even just getting an x-ray done is going to be so hard on him... painful.

I know (I believe) the surgery had to be done. Knowing that the surgeon found the labrum still intact and in good shape reinforces for me that getting the hip fixed (before there was damage done) was a good thing.

But I wish we didn't have to go through the same misery we had last time with M's GI system. It's hard for me to think about finding the energy again for the kind of long drawn out recovery M had after his last hip surgery.

I'll do what I have to do though... and count this as a learning experience... apparently M's gut can't manage any surgery... it must not have been the narcotic pain killers, or the complete lack of activity after the last surgery that triggered those problems... since neither of those were issues this time.

When I'm tired my mind travels a path I usually carefully avoid... wondering about M's future. People with schizophrenia typically don't live as long as people without sz... and FASD has it's own set of life shortening problems. M has both... and a bunch of other medical/physical problems. And he, apparently, can't tolerate any surgery without severe consequences.

I can't think about his future right now... I need to think about today. Which doctor to call first... should we have him readmitted, or try to handle things at home? (with lots of physician support, of course...)

And my younger two daughters each have birthdays during the next few weeks... (K will be 24, R will be 15!) and I'll need to get some shopping done, and plan the celebrations! (Hmm... celebrations that might be tricky if M still can't eat... :( )

But in my spare time, because painting is one of my favorite therapies (and I've already painted everything inside the house that needs painting and I can reach!), I've started working on a long-thought-about project...

..decorating my barn with a little "barn art". Yesterday, I got about half the face drawn on the barn with chalk... hopefully I'll finish the chalk part today and start painting.

It took me awhile to figure out how to take care of M and work out in the pasture on a ladder, but necessity is the mother of invention you know... and finally I just loaded M into the minivan and drove him out into the pasture to the barn. He was able to sit or recline on the lovely soft leather seats, while I worked up on the ladder just a few feet away.

Tucker was the only one who thought this was a terrible idea... I wish I had a picture of the shock on his face as I drove the minivan through the gate and into the pasture. He looked absolutely incredulous that I would do such a thing! At first he took a defiant stand just inside the pasture gate... sure I would never move that huge red thing past him and into his territory. But as the minivan kept moving towards him he rethought the wisdom of taking a stand against the intruder, and settled for snorting out a warning and tossing his head around as he ran away.

Ah Tucker... you make me smile... you are such a brave little donkey.

So, between phone calls to doctors today, I'll be out at the barn on the ladder... and maybe part of the good that will come from where we are right now is a funny little bit of barn art smiling over my pasture!

Sunday, September 25, 2011

We're not quite on the "other side"...

... of M's surgery drama yet, but I think we are getting close... so I thought it might be a good time to post an update.

Surgery was Tuesday morning (the 20th) and went very well. Back in February of 2010, when he had his first hip surgery, the surgeon found more damage to the joint than he'd anticipated. The surgeon had gone in expecting the need to repair the labrum and found instead that it was completely worn away in places... nothing left to repair. (As a result, M has degenerative joint disease and the expectation of lifelong pain, to some degree, in that hip.)

During this latest surgery, the surgeon again expected to have to repair the labrum... but found instead that it was in good shape! No repairs were needed. So all he needed to do was reshape the head of M's femur.  Because the surgery was much less invasive than last time (and because M's schizophrenia interferes with how he processes pain), M didn't need any narcotic pain meds after surgery... which gave us hope for avoiding the kinds of problems that led to the bowel impaction he ended up with after his previous hip surgery. (Narcotic pain meds slow GI motility, something M already has problems with.) He was discharged on Thursday with my only major concern being that neither GI, nor Behavioral Sciences, had provided the support they were supposed to while M was in the hospital. That support had been part of the "package" the surgeon and I had put together to support M and help get him through surgery and recovery as easily as possible.

I'd had high hopes for both the GI and Behavioral Sciences people... the surgeon had formally requested consults from both departments during M's stay in the hospital. But no one from GI ever showed and after waiting hours for them to come give us some direction in terms of restarting M on solid food, the nurses and I just let him eat (the very  modified low fat diet we thought he could digest). M was discharged without ever seeing anyone from GI. Behavioral Sciences did a bit better... they did show up and immediately made sure I knew they wouldn't change any meds (What? Had I asked them to? No!) then asked what I did need... I said I needed to "borrow" a therapist to help with M's PT. The crutches were a huge challenge, triggering a lot of anxiety... and the PT working with him didn't have a great rapport with him. (Her way of trying to motivate him was telling him he couldn't go home 'til he could get it figured out... nothing like a little pressure to trigger more anxiety!) Anyway, the behavioral sciences doc left to go find me a therapist I could borrow for an hour or so and never returned.

Sigh...

M seemed fine at discharge... his gut seemed to be working, and his pain level was minimal.  He was having trouble remembering which hip had been fixed (the right one this time) and kept putting full weight on that leg (which he wasn't supposed to do for two weeks) but otherwise he seemed to be doing great. They sent us home with the CPM (continuous passive motion) machine again, a neat little plug in ice pack, and a set of crutches. I climbed up into the hay loft of the barn as soon as we got home and got out his walker and raised toilet seat, and I thought we were home free.

My optimism came back to bite me though... M began having severe stomach pain Friday night, and the terrible vomiting he had after his last surgery returned too. (He threw up so hard that night that he broke blood vessels in both eyes! :(

Despite giving him LOTS of miralax and carefully monitoring his diet both before and after surgery, his gut had shut down again.

So... I called Children's Hospital and threw a smallish fit (over the lack of the GI support that the surgeon had requested), panicked just a little (I can't tell you how much M and I don't want a repeat of the impaction he had last time!) then hunkered down to try and get things back on track.

Now... almost 48 hours later... I'm thinking I might have caught it early enough  to avoid another trip to the hospital. (If he isn't MUCH better today, he has to be readmitted. :( ) He seemed better by last night, but yesterday was rough...  He was back on a clear liquid diet, and was HUNGRY (he's always hungry, his GI problems rarely take away his ravenous hunger), but nothing was moving through his GI system. He was getting edgier and more (psychiatrically) symptomatic by the second over his clear liquid diet. At one point he was starting to disconnect over Ramen noodles...insisting that he had to have them... NOW!... and WHY are they solid food??!! So I offered to call the pediatrician to ask if he could have them. Luckily our regular pediatrician was on call yesterday, because it was a very strange conversation... me asking if Ramen noodles are solid food and her trying to figure out just how bad things had gotten over here for me to be asking that question. She finally said it was better for M to just eat some Ramen noodles, even if it meant they might come right back up or make the GI problems worse... than to lose his mind over a packet of Ramens.

I agreed, and he got his Ramens. ;)

So that's where we're at... M slept through the night last night for the first time since his surgery and is still asleep. We're going to have to keep his "bowel regimen" going for who knows how long... but that's ok. As long as his gut keeps working I don't mind loading him up with stuff to keep his GI system functional.

M just woke up so I've got to run, but before I forget... M LOVES to get cards, so if you have a minute to send him a card or short note, it would make his day. (If you don't have our address, just leave a comment with your email address, and I'll get it to you.) Thanks :)

Monday, September 19, 2011

See ya...

No, I'm not going anywhere.

Well, kind of I am... I'll be spending the middle of this week at Children's Hospital with M. His second hip surgery is tomorrow...

His last surgery was SO bad, and his recovery SOOO scary, that I'm preparing for another rough road... and will pleasantly surprised and incredibly grateful if this surgery goes well and he has an uneventful recovery.

Please keep him in your prayers tomorrow... Surgery is scheduled for 10:15 and should last about 3 hours. If everything goes as planned we should be home on Weds. or Thurs.

We are all pretty stressed about this... (Have I mentioned how BAD things went after his last hip surgery?!)... but his pain level is so high that we can't just let things go. Every step is causing more damage to the joint, and the pain is so severe that it limits, terribly, what he can do.

So... tomorrow is it.

I'll post again when it's all over.

Friday, September 16, 2011

I.E.P.

Individualized Education Program (IEP):

An IEP describes an individualized educational program that has been designed to meet a child's unique needs.  Each child who receives special education and related services must have an IEP.  Each IEP must be designed for one student and must be a truly individualized document.  The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when age appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

The Individualized Education Program (IEP) is a legally binding document.

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For the first time in 11 years M is enrolled as a student in a public school district.

For the first time in 11 years he has an IEP.

I'm not sure if this is a good thing or not.

I had high hopes for the school to work transition program offered by our county. It is for 18-21 year olds who have disabilities, and focuses on teaching life and employment skills. I thought it would be a good next step for M... learning from someone other than me, and being pushed... stretched... a little in terms of work skills. Statistically, it's very unlikely he'll be able to work, even part time, as an adult. The schizophrenia makes working very difficult... the FASD and his physical problems only add another layer of challenge to keeping a job.

But...

... he's already shown that he's capable of things you wouldn't expect from someone with his diagnoses. So my thought was, lets see what he can do... (Always monitoring, of course, that he's not pushed too much... risking destabilization and other problems.) I had high hopes for the program...

Now, one month (and one IEP) into M's new schooling experience, I'm realizing that it's not all I'd hoped. His time on work sites is severely limited by his need for line of sight supervision and his hip problems.  During his time at "the center" (really just a single temporary classroom sitting in a parking lot in town) he's working on things that we've already done at home. When they aren't at job sites or working at the center, they work on community assess... being out and about in town, shopping, eating out, etc. That might be a valuable thing to work on for kids who have spent Monday through Friday for the past 12 years in a school or in a day care setting... but M has spent the past 12 years out in the community. Homeschooling has already given him many (most?) of the skills they are working on in this transition program...

Sometimes, when they tell me what they are doing for the day, I feel like they're just babysitting.

We don't need babysitting.

And while M is there playing Uno and putting crayons into baggies for IHOP to hand out with their kid's menus...

... he's losing academic skills.

Skills we worked hard for many years for him to learn. This isn't just my fear or a guess... I'm seeing it happen.

I just can't let those skills go without trying to help him hold onto them.

They do no academics at his transition program.

So I've got to make sure we have time to do enough school at home to help him hold onto what he's already learned, and hopefully continue learning.

This probably means limiting his time at the transition program.

I'm going to have to spend some time thinking about what this might look like, then we'll need to have another meeting to make the changes to his IEP. (Right now it's written for him to be there full time...)

Right now though, my mind is full of worries about his upcoming hip surgery (scheduled for Tuesday) and my concerns about his transition program are like the miserable flies out in the pasture... buzzing through my thoughts, never holding still long enough for me to do anything about them, but never going away either.

Maybe when M's in the hospital, and I have those quiet hours with nothing to do but sit by his bed while he sleeps, I'll be able to get my thoughts organized and figure out a plan that will help M stretch and grow in living skills, while still leaving time (and energy) for his academic skills.

I should also follow up on my last post while I'm here. No, Liese, I'm not 72... I guess the horizontal candle on my birthday cake doesn't look as much like a minus sign as I thought it did. The candles say 63 - 9. :)

Tuesday, September 13, 2011

No way...

... it can't have been a week since I last blogged!

Ok... so maybe it has.

The week zoomed by at warp speed... here are a few highlights:

1 blown truck motor

2 full days looking for a new truck for Joe

3 days (so far) of dd#2 visiting from Chicago... It's been so good to see her, it's been 9 months since she was here... the longest time she's ever been away from home.

4 hours that I had to fast this morning before a stress test... but it ended up being a 10 hour fast instead because the test was scheduled for 9:00 a.m. and there is no way I was going to get up at 4:45 a.m. to eat!

5 emails (yes FIVE!) back and forth this afternoon with the transition program M is going to, about finalizing his IEP. I'm so ready to throw in the towel... this is NO fun. I want my uncomplicated fulltime homeschooling days back!!

6 (or was it 60?) trucks we looked at trying to find one that Joe liked and we could afford

7 days until M's hip surgery... and we're all starting to stress and worry about how his gut will handle another surgery.

8 hours is the time I have, from right this minute, to completely organize my records from the past five years of M's homeschooling and create a "transcript" that matches their graduation requirements, for the transition program he's in. They say I really need to have it ready for the IEP meeting tomorrow morning. Let's see... sleep... or make a transcript...what should I do? Ha... sleep wins by a mile. They are just going to have to wait for their "transcript"!

We also celebrated a birthday this week (mine :) )... Can you tell how old I am? (I see no reason to constantly buy new birthday candles... reusing works well for me and if we don't have the right numerals, a little math will take care of it!)

... I had a wonderful time at my lovely granddaughter's grandparent's day at school...

... and found this cool Periodic Table of Elements game at the Goodwill store.

Life has to slow down soon. If nothing else, M's surgery will slow us all down...

If you have sent me an email or left me a message (which would be virtually everyone I know!), thank you... I'll call (reply) soon! :)

No way...

... it can't have been a week since I last blogged!

Ok... so maybe it has.

The week zoomed by at warp speed... here are a few highlights:

1 blown truck motor

2 full days looking for a new truck for Joe

3 days (so far) of dd#2 visiting from Chicago... It's been so good to see her, it's been 9 months since she was here... the longest time she's ever been away from home.

4 hours that I had to fast this morning before a stress test... but it ended up being a 10 hour fast instead because the test was scheduled for 9:00 a.m. and there is no way I was going to get up at 4:45 a.m. to eat!

5 emails (yes FIVE!) back and forth this afternoon with the transition program M is going to, about finalizing his IEP. I'm so ready to throw in the towel... this is NO fun. I want my uncomplicated fulltime homeschooling days back!!

6 (or was it 60?) trucks we looked at trying to find one that Joe liked and we could afford

7 days until M's hip surgery... and we're all starting to stress and worry about how his gut will handle another surgery.

8 hours is the time I have, from right this minute, to completely organize my records from the past five years of M's homeschooling and create a "transcript" that matches their graduation requirements, for the transition program he's in. They say I really need to have it ready for the IEP meeting tomorrow morning. Let's see... sleep... or make a transcript...what should I do? Ha... sleep wins by a mile. They are just going to have to wait for their "transcript"!

We also celebrated a birthday this week (mine :) )... Can you tell how old I am? (I see no reason to constantly buy new birthday candles... reusing works well for me and if we don't have the right numerals, a little math will take care of it!)

... I had a wonderful time at my lovely granddaughter's grandparent's day at school...

... and found this cool Periodic Table of Elements game at the Goodwill store.

Life has to slow down soon. If nothing else, M's surgery will slow us all down...

If you have sent me an email or left me a message (which would be virtually everyone I know!), thank you... I'll call (reply) soon! :)

Tuesday, September 6, 2011

Catchin' up

I haven't had much time to blog lately...  I've been working outside every spare moment, trying to get a bunch of outside work done before the weather changes. We hired a "handyman" last weekend to do the work that's too high or too heavy for me, and he and I worked on the house virtually all weekend. Mostly we're painting.... the main part of the house is stucco which doesn't need paint, but the trim on both house and barn badly needed paint this year.

So.... I've been painting (and painting, and PAINTING...) and letting most everything else go.

The end is in sight though, the barn trim is almost done and I've only got four house windows left.  I wish I could find someone to repaint the exterior of the barn... It needs to be sprayed and I just haven't been able to find anyone to do it. :(

I still want to decorate the north side of our barn with a bit of "barn art"... I wish I had a taller ladder. Designing and painting the "art" would be fun... if I had some way to get up high enough to paint it. (This barn isn't ours of course, but I love it's barn art. I wouldn't put quite that much on my barn... I'm thinking just eyes and a smile, and smaller in proportion to the side of our little barn...)



Sigh... that might have to wait for another year.

Anyway... all is well here... just very busy... be back soon. :)

Thursday, September 1, 2011

a little toadiness

Dinner...



... so close and yet so far away.

Happy September! I'm not going to post about it being my favorite month, because I already did that here... but know that we are all very happy to see the beginning of the end of all the hot weather we've had lately.

Come on Fall.... the barn is full of hay and we're ready for you!

The vet will be out later to look at Murphy (who looks better, yay! :) ) later today, and we're helping dd#1 move a table, but other than that the day is open.

Might be a good day to putter around in the garden...