Sick

Recently, we met a lot of resistance from Devin with taking her meds.  She has been having some uncomfortable side effects, and she doesn't want to have them again.  Twice, her jaw has locked up, and twice, she has had tremors.  One morning, she took her medicine after a lot of force, we got her in the bath, and just as she was getting out of the bath, she went straight to the toilet and threw them up.

I was a mess.  I didn't know what to do.  We were just 10 minutes away from taking J to school.  I obviously had to leave D home.  I put her to bed with a bowl.  I worried.  Should I give them to her again and risk a reaction?  They always scared her so much.  What if she was sick again?  What if she passed out, like she has before?  I prayed the whole hour there and back and texted her at a stop light.  She slept the whole time, thankfully.

I gave her just the most important medicine when I got home.  She slept some more.  I had a doctor appointment that I couldn't miss at 10 am.  While I was checking in, D called me to tell me she threw up in the bowl and had diarrhea.  Oh man. Luckily it was at a location just 10 minutes away, and this is a doctor that gets me in and out fast.   When I got home, I found I had misunderstood and she had not thrown up again.  A tender mercy, since I wasn't going to try this medicine again.  It has a short half-life, which means if I miss a dose, we'll have to start all over.

When people ask me how it's going, I say it's like a merry-go-round.  They don't know what I mean.  I mean there are ups and downs every single day, but mostly, we go around and around.  We switch one OCD thing for another.  Today she might wear clothes, but he might be clogging the toilet.  Or she might be pulling all the threads out of one of my towels.  Or she might be picking at her skin.  Usually it's all of the above.  Today, she has spent the day having me pour water over her head.  I don't know what's wrong.  I wonder if there's something medically wrong.  There are blotches on the back of her neck/head, but I'm not sure if that's because she's been wearing a towel on her head all day, pulling on her hair.  I have been trying for days to get her to wear her hair in a ponytail, like she did when she was little. She says sure, but when tomorrow comes, she probably won't.

Is the medication working?  Well, she's more pleasant.  We discovered that she was over-medicated with one of her medications, entirely by accident.  We discovered this when she threw up her pills.  Since then, we have reduced one, and she's been less "drugged."

But we haven't seen a lot of OCD symptoms improved.  We'll just have to keep praying.  I'm running out of toilet paper!

Soap

One of Devin's sensory issues deals with certain smells.  Specifically, the kinds that Jadyn and I like.  She does not like my Bath and Body foaming soaps, so she avoids me like the plague after I go to the bathroom.  You would think it's because I went to the bathroom. Nope.  It's because I washed my hands.  With that yucky, smelly stuff.

I used to go when she wasn't looking, but she got wise and it started creating some trust issues.  Last week she started showing up in the bathroom doorway.  Hello!  This week, she's been accusing me every time I go in my bedroom. 

Today, it came to a boil.  Meaning I lost my cool.  Yes.  Yes, I did.

She wouldn't even touch the math assignment after I did.  So I went and rubbed my hands on her butt.  Yeah, rubbed them.  She freaked out and jumped in the tub.

I had a talk with her and asked her if she thought the water was going to wash the yucky, smelly soap off of her that I contaminated her with.  She said yes, with the bar soap.  So I said wouldn't that work for me as well?  She said yes, so I agreed to only use the bar soap if she would stop treating me like I had leprosy. 

A small victory.

Rock Bottom

After the near drowning, Devin's therapist recommended we put her on Abilify.  This medication worked pretty well for her OCD, but made her gain a lot of weight--2-3 lbs a week.  After about 3 months, we decided that it was doing more harm than good, and we took her off in October.  This month, we began seeing the more serious OCD symptoms return.

Some of those things that became problematic were that she became more sensitive to sound.  This is not sound in general, but sound when she is trying to concentrate.  Think of it this way.  Some people, like me, get stressed a bit when they are driving and trying to find an address.  Sometimes I have to turn down the radio so I can concentrate.  This is kind of what it's like for her. Devin gets stressed when it comes to clothing due to her SPD (sensory processing disorder).  Clothes bother her big time.  So when she's concentrating on fixing an article of clothing, she needs quiet.  That means that no one in the house can talk, and we have to mute the TV.

Another thing is that she is sensitive around her ears.  While she is unable to describe the discomfort, I think it has something to do with her ears tickling them.  She has begun a routine of pulling her hair down by her ears.  As the days go by, it takes longer to calm herself.  Now, we have to stop talking while she does it and mute the TV.

Using the bathroom has become laborious in the sense that wiping takes time and TP.  It is common for her to use a whole roll of TP and either Darin or I have to use the plunger after she uses it.  It is also common for her to sit on the toilet for half an hour or more, and that is not because she is constipated or anything.  It's because her brain is stuck, and she can't get herself of the toilet.

The winter months have been especially stressful for me because all she will wear right now is dresses.  She stopped wearing undies back when she had an ultrasound (she was constipated and they were checking to make sure that's all it was) because the technician got some gel on them.  In her brain, she can't get past the thought that it was on there then, so it will still be there now.  She has some UGG boots, which are the third or forth boots we've bought her this year, but she won't wear them because they are "lumpy."  So, she goes barefoot.  Even in the snow.  She won't put her coat on because her sleeves bunch up.  So she just puts the hood on.  Or doesn't wear one at all.  People treat me like a bad mom everywhere I go these days.  

These are just a few of the things we've been dealing with the last few months.

Starting Thursday, she took off her dress and spent the day crying.  And then a miracle happened.  Darin texted me and said Devin's therapist had called him and said she thought she found a med that was weight neutral (meaning doesn't make you gain or lose weight) and wouldn't cause much problems with the heart.  She had talked to a psychiatrist and Devin's cardiologist, and they both thought this would be a good choice.  It couldn't have happened on a better day.  But we needed to get her to an EKG to get a baseline and make sure she was still ok.

We barely got through the weekend. She spent it naked.  We got the EKG in her bathrobe.

By some miracle, she got dressed so I could go to my doctor appointment.  Some worker there had a fit because she waited outside the bathroom while I went pee for 5 minutes.  But that's a whole other story.  She's 11 years old, and was perfectly fine.  Really, some people.

Tuesday, was rock bottom.  She spent the day bent over, holding her head.  She couldn't explain it to me, but something was bothering me.  She had an appointment with her therapist where we would find out how the EKG was and get the prescription.  Darin went alone because she was naked and suffering.

The therapist said she insurance wouldn't pay without Devin there, but she would do a quick 5 minute consult and Darin got the prescription.  The EKG was better than it has ever been.  The therapist said that if this didn't work, we would have to admit her.  We started it that night, and the next day she said, "I think I know how to fix the problem."  She did some flip of her hair and was ok.

Things aren't perfect, but she's functioning again.

The prescription called for one dose for 2 nights, then 2 doses a day.  We gave her 2 doses today.  Tonight, about an hour after her second dose, her jaw started locking up, then her knees buckled, and she put her head on my lap and fell asleep.  We looked it up, and she might need to just go with one dose.  Pretty scary. 

Near Drowning

I haven't posted for quite a while, but I've been feeling like I want to share how the Lord has blessed us. 

It will take me a while to get caught up, but here is what happened when she nearly drowned.

The medication Devin was on when I was posting a few years ago really wasn't doing much.  So we stopped that and started another.  This medication is known to cause heart problems, so we needed to have an EKG before we began.  Turns out Devin already had Long QT, which can be dangerous.  So we kept a good eye on her, and had lots of EKGs.

One warm day last June, Darin and the girls were playing in the wave pool at 7 Peaks, and Devin passed out, likely from the over-exertion of playing in the pool combined with the Long QT.  She was under water for what Darin thought was maybe 10 seconds before he saw her laying on her side and was able to pull her out of the water.  He turned her on her side and checked to see if she was breathing.  She seemed to be, so he immediately gave her a blessing.  I have no doubt that this saved her life. She began vomiting.  After about 5 minutes, another parent noticed, and let a lifeguard know.  Then they called the medic.

Around this time, Darin sent Jadyn to get me; I was over on the other side reading a book.  When I got there, I didn't like what I saw.  She was lethargic and wanted to go to sleep.  I sent Darin to get out stuff.  It took him a while because we had a canopy and camp chairs to put away.  She was still vomiting for about 10 minutes after I got there.  While I waited with Devin, a lifeguard wheeled her to a shower so I could clean up the vomit.

When we returned, the medic spoke with me and talked me into calling an ambulance.  I didn't need much persuading because he, and I, was afraid she was going to seize while we drove her to the ER.  It seemed to take forever for the ambulance to get there.  When they did get there, there were mountains of questions, and so much background information to give them.  When they took her, they agreed to let me go in the ambulance, given her anxiety.

On the ride there, she began to perk up, and I began to feel less stressed.  I remember her opening one eye and glancing around to observe where she was--a long-time dream to be in an ambulance.  After peeking out, she pulled the sheet over her head.  When we got to the ER, the EMT said, "Devin, could we pull the sheet down from your head.  These guys get a little worried when they see someone with a sheet over their head."  That was a laugh that I needed for sure.

Did I mention that we were all in our swim suits?  Yep, so I told Darin to head home and get some clothes for me and Devin.  It took forever, it seemed, for them to arrive at the ER.

She was hooked up to all kinds of machines so they could monitor her.  She slept for about 3-4 hours, and then she suddenly just woke up and was great.  After 10 hours of observation, she was released.  But not before she fulfilled several more dreams:  working the electric bed, room service, manning the remote, riding in a wheel chair, and the best was the ambulance ride, even though she didn't feel well at the time.

It turns out that it was a good thing that she passed out before she went under the water because her body shut down and so she did not inhale much water.

The Lord has blessed us.

July. How long until school starts?

Well, we've come soooooo far.  She's mostly bathing herself, she's washing her hands by herself (granted she'll only do it with bar soap, but that's  huuuuuuuuuuuuuge progress).  AND.  She's wiping her own butt when she poops.  Whoa!  I don't think I ever thought that would happen.  I am no longer the official butt wiper.  Time to have a party.  Seriously.

But, I think we may need to up the meds one more time before upping them for the last time.  She still struggles with a few of those annoyingly time-consuming things like her many routines when putting on clothes.  Mostly, we're facing clothing issues.  Probably related to her SIDS (sensory sensitivity).  I finally gave up the battle and gave all her jeans and non-T-shirts to her friend, Savvy.  I'm about to give her the shorts, too.  A whole drawer full of shorts.  :(  Kohl's let me return some pants we bought last year, except for one pair that she cut the tag out of and then decided she didn't like them anyway.   Wow!  Kohl's is seriously awesome!

And because of her lack of appetite, due to meds, I am constantly hounding her to eat and drink.  All day long, "Devin, take a bite.  Devin, drink your milk."  I'm annoying myself!  Dr. suggested we have her drink carnation instant breakfast to keep her from losing weight.  Since we've been doing that, she will no longer drink any chocolate.  She used to beg us for it.  Now she can't stand it. 

Still working on the goal to talk to her teachers.  She does really well writing them notes (except for when they say "I hate you!").  Boy, do I really want her talking to people?  LOL

It's been a challenging summer so far.  This is the first year I've been anxious for school to start.  Devin has been a bit naughty getting into treats and snacks.  Just yesterday, she took a whole loaf of uneaten Great Harvest pumpkin chocolate chip bread up to her room and ate most of it.  There are several crumbs left, but I really don't want anymore.  Thank you.

She also gets sassy and stubborn when she's up too late, which has happened a lot now that it's summer.  Been trying to get her to bed at a decent hour, but the family works against me sometimes.  :)

Almost Eight Months on Meds

The last few months we've been kind of taking a break with working on different OCD issues with Devin.  After all that hard work, we just needed a break.  But, Devin had a doctor appointment on Monday, and she asked if we were ready to start our year of re-wiring.  At that point, I realized we still have a lot of work to do.  Most of the issues are petty little things that just annoy me, but there are some big issues that we need to deal with, so we decided to take the next three months to deal with everything and get to where we want to be before we begin the re-wiring. 

Let me take a moment to explain the re-wiring process.  When we are to where we need/want to be, the doctor will increase the dosage for a year to re-wire her brain.  After that, Devin is supposed to be able to come off the meds and not revert back to where we came from.  I'm still nervous about coming off the meds, but I'll just have faith.  We've come so far, and it's been such hard work, that I don't want to find ourselves back where we started.

This last week, Devin worked on two things.  The first thing was that she always insisted on absolutely no talking while she was putting on her shirt.  There is  more ritual to this, but I'll explain more below.  So the goal was that she put on her shirt even when I had music playing or when one of us was talking.  She has been putting her shirt on while I've been in the shower all week, so I'm not sure how this went, but she knows that she's not allowed to tell us to stop talking or to tell me to turn down my music anymore. 

The other thing was tying her bathrobe herself.  When I'm not home, she will do it herself, but when I am home, she makes me do it.  She didn't really wear her bathrobe much this week, but she knows that I'm not helping her anymore.  The inside tie will take a lot of practice, I think.  She did try it once and got very frustrated because it was harder.  We'll just keep working on that.

This week, she chose two more easy (petty) things.  First, she is not going to do her "shirt routine."  For the shirt routine, she bends over while she counts to an unknown (to me) number and pats where the tag would normally be, if I hadn't cut it off, that is.  Actually, most of her shirts have the tag just printed on, so this is obviously just a habit that started out as a SID bother.  Just because she was bothered by a tag before, she things it's always going to bother her, even if there is no tag. 

The other thing that she's going to work on is her eating habits.  Because of SID, she often eats things in layers.  I think that this has also become a habit, so we are going to stop doing certain things, like when she has peanut butter on a piece of toast, she has to use her finger to eat all the peanut butter first, and then eat the bread, usually only getting half way through by this time.  Or, when we eat pizza, she eats the cheese with her fingers, then she uses her finger to eat the sauce, and if we're lucky, then she'll eat the bread.  Our new goal is to use forks and spoons more, and fingers less.  When it's pizza or bread, she'll take a bite instead of using her fingers to lick off one layer at a time. 

Usually once we make the goal and she realizes she can't do certain things anymore, we've beat the habit.  But, there are some big things coming up-things that we've literally been working on for years, such as washing her own hands and wiping her own butt or talking to her school teacher or her primary teacher, that are going to be the hardest part of this whole thing.  I know the washing thing is sensory and OCD, but at this point, I think the no-talking-to-adults thing has become just a habit that we have to break.  This, if you can believe it, will be easier than trying to get her to wipe her own butt when she poops. 

Slow but steady!

So Much For Anxiety....

It's been a while since I've blogged, so let's see what I can remember.

Devin's been getting dressed, down to the socks and shoes this past month, with a few stumbling blocks.  One problem we've encountered is that her socks have "bumpy corners" where the seems begin and end.  I thought I had solved that problem by pretending to cut them.  Big mistake!  She was making me do that every day after I did it once.  I was really frustrated, because when she first started wearing these new socks, she said, "It's kinda bumpy, but that's ok, I'll get used to it."  Magic to my ears, but it didn't last.  So this week I've had to tell her I was only pretending to cut them.  Didn't work.  Then I told her that I had already cut them all, and if I cut them anymore, they would all have holes.  I think this may have worked.  Today she didn't make me do it.

Another problem we've had was on Sunday when all her favorite undies were in the laundry.  I think this was because I subbed last week and did the laundry early because I wasn't going to be home to do it on Monday.  Holy Cow!  Complete meltdown!  I bought new undies for her about a month ago when I bought her new socks, but so far she hasn't touched them.  We're going to have to face that battle soon.  I was noticing that her current choice of undies are getting some holes in them.  Anyway, I was trying to get her to 9:00 church by myself, since Darin was at a meeting.  Jadyn had already decided she was sick enough to stay home (we don't stay home often when we're sick, so I took this to mean she really was sick).  I wasn't feeling well, either, but I was going to tough it out since it was Ward Conference.  I finally ended up leaving them both home because I didn't want to deal with it anymore.  When I left, Devin was on her bedroom floor having her meltdown in the undies I put on her.  When I returned, she was naked.  I wasn't surprised.

A really good thing happened this week.  Devin decided she liked her tennis shoes, and has worn them every day this week, and even tying them herself.  I prefer she wear her tennis shoes because her cowboy boots look crazy with sweats and a t-shirt.

We've been working on her brushing her teeth by herself.  I had this bright idea that she use an electric toothbrush, since this would help clean her teeth better than her pitiful strokes would.  I forgot that it tickles for a while, so we're kinda back to the drawing board as far as that goes.  She is doing some of it on her own, such as brushing her tongue and getting her own cup, so that's something.

Did I mention she's been wearing her glasses.  So far, that's going well.  She does take them off when she's using the computer at school and puts on the headphones to listen (even though she can read perfectly fine).  I guess it hurts her ears, so I don't mind.  Crazy thing is, she won't put them on when people are around, so she just brings them home.  I've also noticed she doesn't seem to want to wear them on weekends.  I'm just happy we're getting her to wear them most of the time.

She's always had an aversion to lotions and soaps (those slimy kind of things), so we've sort of decided to pick our battles on that one and just have her wash her hands when she's taking a bath/shower.  Well, since we've been doing so well,  I've told her that we are all going to wash our hands when we come home from school.  I even put a note on the door to remind everyone.  She's given me some weak resistance, but I've remained firm about it, so she's cooperated.  I've yet to get her to do it herself, though.  I squirt it on her hands and then grab her wrists and rub them all around.  One funny thing was when Darin got home, he came in and asked me about the note.  Then it hit me, I put a note there after he got his transplant to help us remember to wash out hands.  I  guess it brought back a slightly unpleasant memory.  :)

Another thing that happened last night.  We had 10 minutes before the girls needed to leave for their activity.  Darin was rubbing my feet with lotion (I'm spoiled, I know).  Then Devin was messing with the cat cage (Henry gets his shots tomorrow), and took it apart, even after Darin told her not to.  So, he got up to swat her butt.  She totally freaked out, ran upstairs, and took off all her clothes.  It wasn't until bedtime that we figured out it was because he touched her with lotion on his hands.  Good grief!!

School has been going well.  Except she's been getting into trouble lately.  First, she got caught climbing the bathroom stalls and giving her friend instructions on how to do it.  Then she got mad at another teacher that took away her ruler, so she wrote that teacher a hate note.  I had her write apologies to both teachers.

The good thing is that she's been able to communicate with her teacher by writing her notes.  The bad thing is that this medication seems to be loosening her inhibitions.

The other day, she just walked out of class without permission (I told her she could do that when she needed to go to the bathroom).  She was gone for about 10 minutes when the teacher sent another student to get her from the bathroom.  The student couldn't find her, so the teacher went to look.  I imagine this scared the teacher, so she had the office call for her.  They found her sitting on the couch by the office.  When asked why, she just wrote on a note, "Leave me alone, Now!"  Oh, boy.

A couple of Saturdays ago, Darin, Jadyn, and Devin were going to go for a bike ride.  Before Darin and Jadyn were ready, Devin took off.  I had fallen asleep on the couch, and when Darin came in to tell me he was going to take the truck to go look for her, I said ok and went back to sleep.  Then I woke up and realized what he had said.  I got in my car and left Jadyn with a cell phone in case she came back.  After 40 minutes of both of us looking in separate vehicles, I finally found her (after saying a prayer) sitting small and scared by the church door.  I almost didn't even see her, and Darin said he had looked there and didn't see her.  I had a little talk with her and told her how scared that made us.  I also reminded her that I didn't like her crossing main street by herself.  Her response: "They waited for me."  I'm thinking, "Yeah, one car waited for you, but that doesn't mean the other lane will see you and wait."

We've seen some progress the last few weeks, but we've also had some challenges.  I don't know why it makes me feel so bad when i get an email from her teacher.  After subbing, I know there are a lot worse behaviors out there.  :$

e, 8, 9

In just 4 days, Devin has conquered her issues with "e", "8", & "9".  We've done one a day for the last 3 days.  This is nothing short of yet another miracle.  Just 2 months ago, I really didn't think this was possible.

I have a gel board that I used when I was teaching that she practices on.  First I hold her hand and write the letter/number, then she writes the letter/number 10 times.  She makes me go into the other room while she does this.  Today I had her do some math problems, with her name at the top so I could be sure that she had them down.  First she returned the paper with the 8s & 9s missing.  I had her go back to the gel board and write them 10 times each.  Then I had her finish the math problems.  And she did it!

She promised me that we'd work on "a" tomorrow.  I just said, "Can we do "a" tomorrow?"  And she said, "Ok."  I'm going to try to do one a day.  At this rate, we might be able to get through all the OCD letters by the end of next week!

It's so nice to feel the hope, to actually believe we're going to beat this.  After the last year of pure desperation, it's so amazing to see that our prayers and faith have made a difference.

And I truly believe that Devin came to our family for a reason, and that she was supposed to be my daughter.  We dealt with fertility issues early in our marriage, and there were times when I wondered if I was meant to be a mother.  But if there's one thing I've learned from this experience, it's that Devin was sent to me.  For a reason.  I really don't think that anyone else could have helped her the way I've been able to help her and understand her like I do.  And my background in education has helped me to teach her when she wasn't able to succeed in school, and fight for her when no one else understood. 

I feel truly blessed as I see God's hand in all of this.

Back to School

So far, so good.  No accidents since the last post.  We've spoken to the school, and Devin's first day back will be Monday, Feb. 10th.  They wanted to know what to do if she pees her pants at school.  Really, I don't even want to go there.  She is not going to pee her pants again.  I feel like if we make plans for the what if, she'll end up doing it.  She's got to realize she's old enough to stop having accidents.

Other progress.  She folds over the band on the one or two pairs of pants (sweats) that are a little long.  For some reason, she thinks she needs to come stand by me to do it, but whatever, she's doing it herself. 

She is holding the toothbrush while Darin or I move her arm back and forth.  Still need to do better with this one, though.

Yesterday I tried to get her to write an e without the scribbles.  I bribed with the kindle, a full size candybar.  Not having none of that.  She just doesn't think she can do it.  I don't know how to get past this roadblock.  I did it a few times holding her hand, but that's as far as we got.  Maybe if we just keep doing that, she'll form a pattern or a habit.  That seems to be the key.  So I guess that's how we'll proceed for a while with the letters and see how that works out. 

I'm starting to look forward to Devin going back to school.  I'd like to have my time back to get some things done.  BUT, I'm really going to miss having her around.  :(

A True Miracle!

Last Thursday, we had a horrible, no good day!!!  That morning when Devin got dressed, she chose her black undies.  I always do a little dance in my head when she wears her black undies, because as I've said previously, those are the only undies she will pull up by herself.

I had just dropped Jadyn off at school, and we sat down at the kitchen table to do some math.  It was about 9:15 when I had her come stand by me so I could explain a math problem to her.  It was then that I noticed that she had peed already!!  So I spanked her good, telling her that wasn't fair to me, because those were the only undies she would pull up on her own.  I throw them in the laundry, because ain't no way I'm giving up my one free day.

Pause.  A few days before, I cleaned out my huge miche purse and moved my stuff to my little miche purse, deciding that it was time for me to move past the "mom bag".  What do you think I found, but the other black undies.  I said outloud, "I wonder how those got in my purse?"  Darin:  "I guess I must have done it."  He knows to take the blame for everything by now, I guess, lol.  But he was totally serious!!!.....???  And all this time I thought Devin must have hid them or even thrown them away to get out of pulling up her own undies. 

So she puts on the other pair of black undies, and I gave her a stern talking to about not peeing them.

A few hours later, I tell Devin to go potty, but alas... too late.  Another good spanking and a really loud lecture from Mom. And no more black undies, because the laundry's not done. 

Time to go get Jadyn, and guess what!  She peed again!  Ok, three strikes, you're out!  She knows I'm not happy at all now.  At this point, I make her help me pull them up, and dare her to pee them.

That was Thursday, and everyday, she's done a little more of the effort, and me a little less. 

This morning, I offered her a full size candy bar if she'd do it herself.  Seriously slow motion in slow motion, but she did it!!!!!!!!!!!!!!!  And as I write, she just went potty again ALL BY HERSELF!!!  I didn't even have to get up to get her toilet paper or pull up her undies or anything!!!!!

Still many other things to work on, by by far, this was a huge obstacle that we just overcame.  I almost want to cry!  I am reminded of months ago when I hoped, but wasn't quite sure when/if it would happen.  Yesterday, Darin and I fasted, just as we fast for Devin every Sunday.  And I tried really hard to do a really good fast, and I know this made a difference.  Our prayers are answered, but often not in the time frame we want.  It has taken months to see a difference, but it's happened.  Miracles truly do happen today!

What about school?  Well, I think we'll give her about 3 weeks to make this all a habit.  There is some concern that she'll start peeing at school just to come home, so we don't want to make the school/not peeing connection in her mind.  

Some Small Progress

Over Christmas Break, we decided Darin would take Devin's hand and make her grab her own toilet paper.  At first, she fought him tooth and nail.  She threw a fit and Darin put her in her room with her new Kindle that she got for Christmas.  After a day of this, with Darin forcing her hand to grab it, she slowly relented.  Each time she made a small improvement/less resistance, we let her use her Kindle.  By the end of the first week of the new year, she was grabbing her own toilet paper.

Next step is to have her pull up her own undies.  We tried to use the same method, but the problem here is that she will take off her undies.  I guess we need to keep it up.  I'm not strong enough (physically and emotionally) to do it on my own.  I hate to do this, so I leave it up to Darin to do it.

Yesterday, she told me she'd put on her own undies if they were all black.  She has two pair (one has mysteriously disappeared) that she puts on herself.  So I scoured the internet looking for black girl undies.  Not much luck. I found some black spiderman undies, but they are boys.  Not sure if I want to go to that length.  A friend suggested we dye her others black.  Sounds like a great idea.  I hope she will like them.

The home/hospital teacher came last Thursday.  I've got to say, I'm not impressed.  They sent us a middle school teacher who just gets her worksheets off the internet.  Some of the worksheets she brought were 1st grade math, some were 3rd grade math.  She's in 2nd grade.  She didn't seem to get it when I said I wanted Devin to use the same textbooks that they use at the school.  When she goes back, I want her to be at the same place.  I asked her to coordinate with Devin's teacher at school.  Not sure how that will go.  I wish they would allow me to be her official teacher, but they said it would be a conflict of interest.  No one has more interest in her future than I. 

Update:
I forgot to mention that we have been using the ABC/123 stamps.  Wow!  Devin can now do her own writing!  It does take a while.  Devin seems to be, by nature, slow.  With just about everything.  I am really trying to be patient with that.  I'm excited about the stamps, but I'm nervous about her taking them to school.  I don't want her to lose them.  They are a lifesaver when she needs to do writing.

Mom School

Mom School.  I refuse to be associated with the whack jobs out there who say they home school and call family outings field trips, or send their kids to someone else to be educated and call it co-op.

I teach Devin, because honestly, I"m the only one that can do it right.  Not knocking public school teachers.  I am one, Darin is one.  Just that they are not able to make the accommodations she needs.  

Last night I ordered some abc/123 stamps so that when she needs to write one of the compulsion letters (like aeutgkqy or 89), she can just stamp them.  Right now, she tells me when she needs to write them and I do it.  I'm really excited to get them in the mail.  They said it wouldn't be until the middle of January, though.  :(  She's doing super well with using the laptop to do her spelling words and dictation, as well as writing assignments. 

Other than that, there haven't been any positive changes.  We're thinking we need to up the meds.  She's actually added a few more rituals since we started the meds.  Last month, the NP upped the ADHD meds.  Although she is completing most of her assignments faster, that could also be due to doing it early in the morning before she's worn out and the meds have worn off. 

Worse, Then Better?

It almost seems like it's gotten worse since Devin first started taking her meds 8 days ago.  Just little things, like having to adjust the waistband for 2 full minutes.  In the past, she has exchanged one compulsion for another, but it really isn't seeming like anything is going away.

Wednesday, Devin's teacher called me to tell me that she had peed her pants.  I've tried to explain to Devin that people notice when she smells like pee, but she's convinced no one notices.  I've had to threaten her with homeschool if she doesn't start using the bathroom at school. 

Sundays and Mondays

Let me just tell you briefly about one thing that happened Sunday. 

Devin has her favorite light blue dress that she always wears.  Well, she wore it to a baptism on Saturday, so it was in the laundry.  When that's not available, she used to wear this fancy maroon dress.  A button popped a few months ago, and Mom hasn't fixed it because 1) I don't know where the button went, and 2) Devin pulled all the threat off of all of my spools of thread several months ago, and I haven't got any more yet.  So she won't wear that one, even though the tie hides that spot.  Soooooooo... she's ok with wearing a skort.  I don't even know what size it is, but it's so short that I'm embarrassed for her to wear it (esp. after my talk last week), but that's all we've got.  I try to talk her into at least wearing tights.  Nope.  Ok, fine.  She insists on wearing the white T-shirt she aways wears under her dresses.  And then a pretty white sweater I just bought her.  At least she likes that.

She went to the bathroom several times that morning.  First she has to unbutton the sweater, take it off and hang it on the doorknob.  Of course, I have to hand her the TP and pull up her undies.  I have to help her put her sweater on.  I made the mistake of grabbing the sweater off the doorknob.  Ack!  She had to put it back on and then grab it herself.  But I still had to help her put it on.

Monday:
We went through our usual routine, except that I hid her favorite T-shirts that are a year old and starting to look it.  First thing's first.  I tell her to grab some undies.  Nope, that's one of my jobs.  Those are on, gym pants are on--I have to fold them over; she's a little too skinny for size 8.  She looks through her drawer and can't decide on a T-shirt.  I ask her if she wants me to help.  Ok.  I pick out the superman T-shirt.  I have to pull it over her head because it's "new" from the start of the school year.  Socks are on.  She goes downstairs to read and eat breakfast. 

I finally make it downstairs.  I give her 10 minutes to go to the bathroom, get her boots on and get in the car.  She waits til the last minute, of course.  Can't put down that *darn* book.  I go to pull up her undies. NOOOOOOOOOOOOO!  She peed because she didn't want to put that *darn* book down.  Now we've got to rush through the whole morning routine in about 1 minute. 

We get to the school, and it's my day to work in her classroom from 8:30-10:00.  I'm so tired.  What happened?  I went to bed early last night.  This kid exhausts me sometimes!

As I'm going through addition flashcards with all the kids, one at a time, I notice that Devin's not doing her work.  First she's supposed to do some math facts.  Then she's supposed to do a KWL chart in her journal.  Anything that has to do with writing is a nightmare.  Next is reading.  Oh, no problem there. 

Halloween. Candy.

Warning:  Diarrhea talk today.

So you all know Devin likes chocolate.  A lot.  Ok, so do I.  A lot.  Only I'm an adult, and I know (mostly) when to stop.  On Halloween, we let the girls eat as much as they want.

Last year, Devin threw up in the night. Darin and I got up and cleaned it all up and put Devin back to bed. 

I am extremely lucky to have a husband who is willing to get up in the night and help with these kinds of things.  He understands that once I'm up and moving, it takes me hours to get back to sleep.  So when a kid cries out for covers or a drink of water, he's usually the one to take care of it.  If a kid's sick, we both get up.

Last night, Devin got diarrhea.  Ok, full disclosure.  My kids take after that apparent Storey trait (that I did not inherit, by the way), and take a while to get "night-time trained".  So, Devin uses a diaper at night.

Side note:  The doctor explained to us once that there is a hormone that kids develop over time that turns off the pee machine at night.  For some kids it just takes a little longer.

Anyway, back to the diarrhea.  Who do you think got to clean it up?  Yep, this girl.  Because I'm the official butt wiper.  THANKFULLY, it was contained in her diaper, but some did stick to her butt, and it smelled horrendous!  Chocolate the second time around is bad!  Very bad!

Unfortunately, I was up for I'd say about 3 hours.  Devin came into our bed for several hours, and then she started grinding her teeth, which drives me crazy.  She finally went to her own bed at 4am.  Gonna need a nap today for sure!

She's sitting on the toilet as I write this.  I guess I'd better get off and go help her.  She'd sit there for hours if I let her.  

Living With OCD

To start, let me just say, this is not the cute OCD we used to talk about when Jadyn would arrange cans on the shelf in the store.  It's not the annoying way I have to have all my cooking tools in the right spot, in the right drawer.  This is debilitating, clinical OCD.  And Devin has it.  Two years ago, a psychologist suggested she might have it.  Me and Darin:  "No, she just really likes books.  ...and freaks out when we stop her half-way through one to do... anything."  Ok, we're ready to say it out loud. Devin has OCD.


I know, I know, you're all thinking, I thought she had Selective Mutism.  Yes.

I thought she had SID (Sensory Integration Disorder).  Yes.

I thought she had ADHD/ADD.  Yes.

Now, throw OCD into that mix.  What have you got???  Well, for starters, a pretty chaotic morning, every morning, and two very frazzled parents.  If only that RS President knew that when she arrives at my house 15 minutes early for our meetings, there's a pretty darn good reason why I'm stressed and not all that pleasant, and why arriving 15 minutes early is such a big deal.

OCD is a mental illness. I sooooooooo appreciated Elder Holland's talk in April's conference where he talked about that father who brought the boy "possessed with spirits" to Jesus.  I remember listening to that talk in the car, on my way to a sub job, when it suddenly hit me.  "Our whole family is affected by this."  I couldn't stop the tears, and I can only imagine what I looked like as I walked into that school that day.

And then in his talk this October:   "So how do you best respond when mental or emotional challenges confront you or those you love? Above all, never lose faith in your Father in Heaven, who loves you more than you can comprehend.... Seek the counsel of those who hold keys for your spiritual well-being. Ask for and cherish priesthood blessings. Take the sacrament every week, and hold fast to the perfecting promises of the Atonement of Jesus Christ. Believe in miracles. I have seen so many of them come when every other indication would say that hope was lost. Hope is never lost. If those miracles do not come soon or fully or seemingly at all, remember the Savior’s own anguished example: if the bitter cup does not pass, drink it and be strong, trusting in happier days ahead." 

Darin and I fast and pray on a weekly basis.  Darin gives Devin blessings weekly.  "Lord, I believe.  Help though mine unbelief."

Elder Holland also says, "If things continue to be debilitating, seek the advice of reputable people with certified training, professional skills, and good values. Be honest with them about your history and your struggles. Prayerfully and responsibly consider the counsel they give and the solutions they prescribe. If you had appendicitis, God would expect you to seek a priesthood blessing and get the best medical care available. So too with emotional disorders. Our Father in Heaven expects us to use all of the marvelous gifts He has provided in this glorious dispensation."

What a comfort it was to hear him say this.  We put it off for far too long, hoping that we could just fast and pray, and if we had enough faith, she would get better.  But two months ago, I reached my limit and asked Darin to make an appointment.  Since then, I have been working more on my patience and compassion.

So here's how this morning went.   (Devin also has a night-time routine with Darin, but I won't go into that right now.  Maybe another day.)  Halloween morning, where costumes are required.  5:50, Darin and I wake up.  I lay in bed on a heating pad instead of my usual hour of exercise.  I'm seriously wondering if the daily morning battle to get Devin dressed and out the door is what's keeping it from healing.  Last night, I told Darin to get the kids up a little earlier because 1) It's Halloween, and 2) Devin's starting her new medication.

Flashback:  Yesterday, Darin took Devin to a nurse practitioner to get some meds.  Yes, thanks to Mr. Obama, it took us 8 weeks to get in to see her.  All our previous drs. have quit.  2 Psychologists, 1 Pediatrician, and 1 family dr.  But that's a whole other conversation.  I used the excuse that I needed to take Jadyn to and from swim, and also "make" the leftovers, so I couldn't do it.  Really, I just don't want to go see another stupid psychologist who says stupid things to Devin like, "How come you don't look happy?"  Hello, she's a Selective Mute, and you've just alienated her in your first sentence.  We've told you, she's got anxiety with new people, and if you want to have success, try complimenting her, not criticizing her.  Duh.

So, basically, this medication is not for depression (She's really not depressed, and is quite a happy kid), but they use the same medication to treat OCD.  Good news, if it works, it may actually cure her of this.  Apparently, if she's on it for 12 months, it can rewire her brain and get rid of these compulsions.  Yay!  Another good thing, her ADHD medication could help tone down the uninhibited Devin that we experienced 2 years ago when she was on these meds for 2 months.  The whole taking off on her bike and crossing a busy 5pm main street by herself and riding all over the neighborhood until one of our friends told us where she was.  Or the grabbing a butcher knife out of the dishwasher as I'm emptying it.  Thank goodness she stopped when I YELLED, "STOP!"

A concern, if she drops below the 10th percentile for weight, it could make her have some psychotic episodes.  Wait, WHAT?  She's in the 13th percentile, so I guess it's time to fatten the calf.  Funny, she really doesn't look skinny to me.  She kinda looks perfect to me.  Now, last year when she started her ADHD meds, and lost 8 lbs.  That was skinny!  Thankfully, we took her off over the summer to "fatten her up."  Unfortunately, it drives Darin absolutely crazy when she asks for "a fine feast" of a slice of bologna, a slice of cheese, and pretzels at 9:30 pm.  Me, I'm just glad she's eating.

Ok, so back to this morning.  Darin usually gives her the medication because I'm usually exercising still, and because it's often a battle.  We've put her ADHD meds in applesauce for a year now, and it's been going pretty well after a rough start.  But today, we've got to add a new medication to the mix.  Well, despite starting earlier than usual, it's 7:05, and Darin's supposed to be at work already, and she's barely taken any of the medicine.  So I told him to go and I'd do it.  I begged, pleaded, bribed (oops, I forgot to give her that piece of chocolate), even let her get a big swallow of water after each bite, meanwhile thinking about how she's going to pee her pants 30 minutes after school starts.  Finally, it's done.  Oh, did I mention that by this time, she's sitting on the toilet?  I give her her three squares of toilet paper.

Pause.  Months ago, she was using, like, seriously, a whole roll of toilet paper to wipe, and we were having the toilets clog every day, sometimes twice a day (not to mention the cost!).  So I said she only gets 3 squares.  That's all.  "Well, I don't know how many to get."  So I show her.  I rip off 3 squares and give it to her.  A new compulsion is born.  Now, she often comes home smelling like pee because she won't go to the bathroom at school because I'm not there to help.  Once upon a time, she could do this on her own.  But not anymore.  Oh, did I mention that since the beginning of the school year, when she got new undies, I've had to pull them up for her.  Something about new clothes that combines her SID with her OCD.  Not pleasant.

Now we're finally back to her bedroom.  I grab the black undies, because those are the only ones she can put on herself.  Nope, it's not Friday, and those are her Friday Undies.  But Devin, it's Halloween, and if you pee your pants, you can't go out trick or treating, because you have to wear your black sweats and t-shirt (her Friday clothes) under your costume.  Nope, it's not Friday.  After 10 minutes of begging, I give in, but only sort of.  I put on another color.  "You know, today's kinda like Friday.  There's no school tomorrow."  "Oh, I didn't know that.  I'd better put on my Friday clothes."  Next come the socks.  I have to put them on, and one by one, wait for her to pull them so far up that holes are about to rip through.  Then I need to grab the sock between the big toe and then second toe and pull.  Then she pulls the sock tight again.  Again SID + OCD is not pleasant.

After this is done, I ask her, "How do you want to wear your hair with your costume?"  She will only wear her hair in three ways:  down, pulled back in a hair clip, and in a French braid.  She says, "In a clip because I've never worn my hair another way with my costume."  As I walk out her room to get the hair clip from my bathroom, I call, "It doesn't matter....."

Into the bathroom, where I brush her hair and her teeth.  After I'm done, she holds her hand out, where I place her cup so that she can rinse.  Once upon a time, she could pick up that *darn* cup by herself.  A rather new development: I have to leave the bathroom and close the door.  Just two weeks ago, I only had to be on her left side, not completely out of the bathroom.

I just start to get ready to take a shower when I remember she has to study her spelling words this morning for her test, so I go back to the bathroom to remind her.  I find Jadyn waiting at the door, and I hear Devin in the bathroom, still spitting.  A carry-over from when she takes her asthma medicine and she has to rinse it out of her mouth or it will stunt her growth.

I am just about to get in the shower, when Devin barges in holding her crotch.  "I gotta go to the bathroom!"  I'm thinking, "You've got your Friday clothes, what's the problem??"  Then I remember, the TP.  Ugh!  See, I knew all that water was going to be a problem.  "Ok, hurry and go in my bathroom."

I'm just getting out of the shower, and Jadyn comes to tell me Devin needs me.  "Why?"  "She's on the toilet."  Again?  Darn TP!  (Only, in my mind, Darn! sounds a lot like Damn!)

I'm all ready, Jadyn's almost ready.  Devin.  Oh, Crap.  She was supposed to draw a picture of her Pet Rock, but we ran out of time yesterday due to her doctor appointment and activity night.  "Ok, draw a picture of your pet rock really fast." Five minutes later, all she's got is a picture of herself and Jadyn.  She's asking how to spell 'sister'.  As I tell her, she's got to extend the cross on the T clear across the page.  On both sides.  She didn't need to do this last month.  E.  Where it connects, she has to scribble it so much that it's unrecognizable.  And every week, it gets worse.  This, along with A's started somewhere around April or May.  She also has to scribble 8's and 9's.  And 9's have to extend the scribble to every available margin.  Then she has to finish drawing the entire family, as well as label us.  Then she draws the Pet Rock. 

Ok, that's finally done.

One more time to the bathroom.  "NO!  I don't have to go again."  "Just try one more time!"  Crying and peeing, "I didn't have to go very much."  Ugh!

Now to get her costume on.  Thankfully, this year all it involves is putting a breast plate, helmet and some sort of arm guards.  Something she can easily do herself.  Easy peasy. 

Next, the boots.  She always has to come ask me if they are right (on the right foot).  Even though she knows *darn* well that they are, she has to ask me.  And I HAVE to say the right words.  Yep or yeah won't do.  It's gotta be YES.   I find myself saying "Yeah, YES" a lot.

Finally in the car and off to school.

At the drop-off, I've got to play Elastigirl and help her hold up her coat hood and put her backpack on from the front seat.

And I drive off, ready for a nap.  Only not today, today is the Halloween parade, and I've got to be back in 1/2 an hour.  Now I'm back from  the parade and typing this, I realize, oh crap!  I need to go to Winco and use that coupon before the kids get out of school in two hours!