325 Melt Down

Very short less aggressive melt down. Only lasted a few minutes.  Mom was home this leaves us both scratching our head.  Did manage to get bicep bitten, and ankle hurt again but no pops just slammed his leg down on my heal.

225 Melt Down

Brief but severe melt down.  Included trying to knock screen out of tv.  When he could not get past me to the tv he began hitting me.  I got control of his hands one with my legs and other with two hands.  With hands under control he began to knee me.  He managed to get me twice in the back of my head.  One hand broke free and he managed to get three pretty good smacks in.  Once I had him completely restrained with body weight he calmed down fairly quickly.

I really hate when he gets that blank stare that he gets just before the fight begins.

Wondering Of Today

Joshua is in a fairly good mood today.  He and I are spending the day alone.  Mom went to take grandpa to the movies for his fathers day present.  Joshua and I have been watching some toons and drinking some power aide this morning.  When it is just he and I we get along well most of the time.  He can entertain himself some and needs dad some.  Rarely does the aggression come out when it is he and I.  I have seen it and its not fun.  I always keep my cell phone in my pocket just in case.

I wish I could write of family vacations and day trips we make but those just don't happen.  I have read of the nightmares that happen on family vacations when the child goes manic.  Our normal life is more one of  seclusion it seems.  There are places we can go but not often.  Josh normally would be at camp this week but because of all he has gone through in the last few weeks and the fact we still have not obtained total stability we felt it best that he not attend.  So summer will be spent back and forth to the pool.  He loves to swim so not a total loss.

Big Sister Visit - Pool Time

Josh had been wanting to go to the pool all week and he had called his oldest sister to come go with us to the pool.  With the youngest out of town on vacation with her mom, the timing was pretty good.  IE it was good for dad to have two children around him for a while.  We also had a very dear friend of my wife's come for some cooling fun.  We were at the pool for well over an hour with no problems what so ever.  Josh  was getting rather tired and we were ready to come home to eat.  We talked Joshua into getting out of the pool and riding the golf cart that security patrols the neighborhood back to the apartment.  The guard knows all about Joshua and is very good at picking up on when we need a little assistance.  As we came in and sat at the table to get him changed out of his wet clothes he had a minor melt down.  Nothing that could not be handled considering the fact that I had both thumbs in one of my hands but he did flail about some.

After dinner was served we didn't hear much out of him.  His favorite that he had not had in well over a month pineapple pizza.  Three slices later I thought we would have to carry him to bed.  He was down and out for the count by 9pm.  Beats the heck out of the 2am deal last night.

On a frugal note..Wife got three pizza's for less than $20.00.

Pop In The Ankle

We just had a huge melt down that took both mom and I to restrain.  Mom had one hand and feet were flying in her direction.  I had one hand and tried to contain his legs by putting my legs around his.  Just as I got my body in position to contain the flailing legs he had a strong pull toward mom with one leg and I felt something pop in my ankle.  My wife looks at me thinking it was Joshua she heard go pop but she could tell right away it was dad that had popped.  There is no bruise in the ankle but feels like a hot knife has been inserted into my ankle.  Tender to walk on.  Fortunate he has calmed down now.  Hope it last the rest of the day.

Don't Lose Yourselves.

Many of you who have been following this blog deal with many of the same issues that our family does.  From the sweet loving child who gives you more love than you can handle, to the raging child who gives you a beat down that Mohammed Ali would be proud to talk about.  Some of you this message may be too late. Some it may be right on time.  It is important to your child that you do not lose yourselves and what makes you an asset to your child.  If it be the patients that you lose or a relationship it has taken years to nurture to build stability in your own life.  You have to take care of yourself and your relationships with others if you are going to be any help to your child.   If your mind and heart are not healthy you can do little good.

I have been dealing with severe depression and sadness for some time now.  I feel like we take two steps forward and three steps back.  Of course this is because of changes in his body chemistry and thought patterns.  It has me discouraged and second guessing most everything we have done and currently doing.  Bipolar can be very hard on those who have it as well as those who deal with it.

I guess you could say I am cycling with Joshua and can not wait till I come out on the other side of this dark place.

 

I Am Tired

Don't know what got into that boy last night.  He was in bed by about 830 but by the time he got to sleep it was pretty close to 2am.  He was not in a rage or anything like that.  In fact he lay there and sang a song he was making up as he went for the longest time.  Sweet sounds but at midnight I wanted even sweet sounds to stop for the night.

Dr Appointment

Well we had a great ride up to the Dr office had a good visit with the Dr.  Hell we even had a good ride home stopping at his favorite fast food joint for a cherry lime aide.  We get home he chows down on a mustard burger which is a first in a very long time.  Then proceeds to lose his mind for the next 5-8 minutes.

Anyhow, the doctor reduced the amount of Depakote to 1000mg per day 500mg am and same again at night. No Benzatropine tonight and half dose tomorrow. And Clonipin was added back in for night time as well as a rescue melt tab for PRN.  No way do I want to become the pharmacist again.  So tonight starts some changes.

5 Minute Melt Down

Five minutes spent on the floor holding your child down as he flails about trying to hit scratch and kick you has to be the longest 5 minutes on the planet.

1 hour after mom gets home she is needing to go back for another massage.

Good Morning

Little man stayed up way late last night and has a bladder the size of and ant.  He must have gone to the bathroom 5 times in the hour before he fell asleep.  He woke and got out of bed very easy this morning.  But was only interested in bacon and only took one bite of the eggs I had made him.

Mom is off getting a massage she received for her birthday from her mom. He was a little concerned about her not being home.  But has had a really good time watching toons with dad.

He has an appointment with his doctor today at 2:30.  I am interested in seeing just how much weight he has lost.  I know he has lost at least 15 lbs.  I am concerned with how fast he is dropping it and the fact that he still does not have much desire for food.  I am thinking pizza may change his mind about not eating.  He has not had his pineapple and ham pizza in several weeks.  The good thing about his weight loss is he don't get so tired going to the pool.  We are seeing him getting excessively hot.  He can be sitting watching TV and break a sweat that is so bad we have to change his clothing.  But when he sleeps he wants to be under a stack of blankets.

I don't think we did the wrong thing when we had him admitted.  I do not think we could have done what had to be done on the med wash.  Getting all the meds out of his system and getting new eyes on him was a good thing.  It is always good to have more than one doctor access the situation.  Joshua's file is about 4 inches thick with all the notes and prescriptions he has been through.  It was in his best interest to have other professionals review that file and help in making a treatment plan for the future.

Last night I sent the wife out for her birthday with her best friend.  The fight that Joshua put up as she was getting ready to go was a pretty severe one.  After he realized it was just he and I some of the sweet man showed up.  As you can see in the video he and I can get along very well and we play off one another well.

Tremors

Joshua has had tremors in his right hand for years that stem from a prescription.  He was on Benzatropine before the hospital stay to help calm that tremor.  After talking with the Dr last night this was added back into his list of pills to take.  Doctor seems to think that the shaking is causing some increased aggitation along with withdrawal still from the cocktail of medications he was on prior to being in the hospital.  It has been two weeks since he was taken off all medications.  I know it can take up to 30 days for some medications to leave the system all together.

I just want my boy to have as happy of a life as he can.  It breaks my heart to see him spend all day secluded in his room on his bed.  Not wanting to get out of bed or join the family.  Maybe that is why I have been willing to take some beatings, because he was at least engaged with us as a family.

We have a follow up with his doctor tomorrow and he will know this is not the fella he saw about a month ago. That is if we can get him out of bed by 330 tomorrow afternoon.

Third Restraint Today

Dad is getting way to old for this.  I can honestly say he is stronger now than he has been in the past.  Episodes are are becoming more violent but are not lasting as long as they were before.  There is really not much I can say about this other than to document it.  I normally post these messages as soon as the battles are over.  Depakote ER dose due at 7pm.

Short Aggressiveness

Just had the second severe aggressive attack in as many days.  It was short lived about 5-8 minutes with scratching and hitting.  Seems to be increasing.  Not sure if he is just getting too hot with this new medication.  He is sweating excessively considering our temp in our house is normally set 70-75 degrees in the summer.  I am near shivering and he is soaked through with sweat.

A Note From Mom

It's hard to know where to start when there is so much churning in my heart.  My husband has done an amazing job describing the hell we've been through over the last two weeks.  Simply put...our hearts are torn apart.  I use to have a quote on the wall in my office that read "Having a child is like watching your heart walk around outside your body".  No one tells you what to do when every step your heart makes is excruciatingly painful!  My husband was reading from entries on facebook and one person mentioned unconditional love.  You don't know what unconditional love is until you've had a child with disabilities.  The simple truth is - unconditional love means doing what's best for the other person, no matter the cost to yourself.  You see, my son is the child I thought I'd never have.  I prayed for years for this child and had actually given up hope for having a biological child of my own.  The Lord blessed us with Joshua.  Over the last 12 years of his life, I continued to think that God wouldn't give me this child unless He planned for me to raise him.  The child of my heart.  The child I longed for.  I realize now that God gave me this child knowing that I would ALWAYS do what was best for him, no matter what the cost.  It's so sad that we can't share our journey and our struggles with everyone because some people, although well meaning, think they know better than you.  Fact is, they don't.  The most supportive people in our lives are the people who listen, ask questions, and pray fervently.

I snuggled up to him in bed last night, and he let me!  It was only about two minutes, but it helps to know that he knows I love him.  So now we wait for him to wake up and join us for the day....praying it's a good day!

Mom

"I can do all things through Christ who strengthens me" Philippians 4:13.  I've found a great daily devotional called "Encouragement for Today"  http://www.crosswalk.com/devotionals/encouragement/  I hope you find strength through Him also!

Wow! Where Did That Come From?

After all these days without getting the crap beat out of me I had thought maybe just maybe we were past it.  I was wrong.  At least it was quick.  Oh the fit that went along with it.  The attempt to scratch is back the hitting is back and even a bite attempt.  I just don't know at this point if he will pull out of it or if we are headed back to where we were.  I sure hope it was just a fluke that will not repeat very often.  I was able to capture on video some of the melt down to share with the doctor.   After watching the clip I realized it is not as bad as it seemed at the time.  Just loud.



With all that being said I am going to chalk it up to him being up so late last night and up earlier this morning than his new "normal".

Late Night

Last night was a 1230 night for Joshua.  His eating habits or lack there of have really taken a toll on his tummy. We must have gone to the bathroom 30 times last night before his tummy cramps stopped.  Kinda hard to adjust his get out of bed schedule when he is awake so late at night.  Hope we can get his eating habits more stable to keep that bad tummy from coming back.

Aggression has been minimum but there were a few instances this past week.  But nothing that was not manageable with a few words of encouragement.Nikon D5100 16.2MP Digital SLR Camera with AF-S DX Nikkor 18-55mm f/3.

Earlier Day

Well today we were able to get him out of his room before 1pm, but just by a hair.  We promised Dad's pancakes and Mom's zucchini bread.  Both of which are finally done.  Takes a while to cook 26 pancakes.  Now I know for a fact that his tummy and mind are not working together as he only ate about 1 and a 1/2 pancakes.  Last time I cooked pancakes he ate 4 and wanted more but told him no, we needed to slow the roll on the pancakes.

One thing we are seeing is almost a total lack of control of bladder and bowel.  We have had to clean mattress covers and blankets and him for the past two mornings.  His morning output is less than 200 cc's.  He is drinking fluids all day long he would normally have morning output of near 800 cc's,  With the high being 1000 cc's.

I am so glad school is out for my wife and she is able to be here with me with him.  She will have her own list of concerns to ask the Dr when we go for his follow up visit.

Josh is being his old self in his obsession with certain things.  Going to the pool is a big one.  At least its not food.  You can see his weight loss.  I am comfortable he is getting enough to sustain him.

More Of Joshua

This evening we went to the pool as a family.  More of the personality we have been missing showed up while we were in the pool.  It is about a 2 block walk to the pool from the apartment.  We walk of course to the pool even with Joshua's limitations.  But today by the time we got home his face was as red as a bandana, and he has sweat rolling down his brow.  It was less than 88 degrees and he had just gotten out of the pool.  Wondering if this could be medicine related or just because of his weight.

He had a blast dunking dad underwater.  Then his big sister.  Mom didn't get dunked....

Out of Bed

Well we have finally decided to come into the living room after laying in bed awake for several hours. First thing he does is hit the tv. I am able to defuse very quickly. He is really wanting to go to the pool today. We will see just how badly he wants to go by how well he does between now and when mom gets home.

Video Pre and Post Hospital Visit

Want to see if you can tell which is which.