Joshua Called

We got a call from Joshua tonight.  It was so good to hear his voice.  He sounded the best I have ever heard him on a call.  He was clear and easy to understand.  He told us how his day was and everything that he was doing.  He only got an upset sound in his voice once and recovered very quickly from it.  He sounded like he was settled into his routine very well.  I had asked him if he was making some friends and he said he was.  Very easy for him when he is in the right frame of mind.  He told us all that he loved us and would see us soon.  It was very nice to hear him with an upbeat tone in his voice.

Now we had already spoken with his doctor so we know there has been one aggressive attack.  But that it was only one swing and Joshua pulled it back together very quickly.  There had been some med adjustments that we will see over the next few days if it will do the trick, or if it will be enough to stabilize his mood.  We were not able to visit him today as today as the doctor wanted today to get him acclimated to the program.  We will see him tomorrow and Sunday.

Short Call

This morning we heard from the therapist to reschedule the family meeting to Sunday.  Since I had her on the phone I thought I would ask how he was doing...ie is he coming out of his room and is he eating ect.  She said they have had no melt downs so far and he is eating and coming out of his room.  This is a big change from when he was at HCPC.  We sure hope they can get meds leveled out and his personality is spot on.  We don't want him to be a zombie.  We want him to interact with the family.  We just want him to be happy.

Paula's Background- Kinda

I've worked professionally with children and adults with disabilities (physical and mental) for the last 19 years. I've been certified in restraint throughout my career and continue to recertify every year. I taught Bryan the appropriate use of non-violent physical restraint and we are very effective when we're together. The goal of restraint is not to contain his behavior, it's to keep him from harming himself or others. If we were to lock him in his room, he will hurt himself. I could care less what he destroys. We can replace damaged items, as we've done many times in the past. But we can't replace our son. He will break anything when he's in a violent rage because he has absolutely no thought of reality. Simply put, locking him in his room would be negligence. On this particular occasion, I was able to restrain him very briefly, get him back under control, and leave him "hiding" under his blankets on his bed. I consider it a successful intervention. Every one of these kiddos is different, so if you finds something that works for you, that's great. God Bless, Paula

AM Update 6/28/12- Mom

I called to check on Joshua. Good news...he let them draw his blood this morning and ate breakfast! He even took his morning medication! He said he was sleepy so they let him lay back down and they plan to try to draw him out of his room this afternoon. This is a huge improvement over his last hospitalization. We plan to receive a call from the doctor this afternoon when he reviews the labwork. Is it sad that this actually makes me feel better? Haha, I guess at this point you take what you can get! Mom

Longest Day Ever.

Yesterday was the longest day we have had in a long time.  It was emotionally taxing, and physically exhausting day.

We started off our day in the ER still.  They did bring me in a hospital bed for that last night thank God.  That was my saving grace.  Had I not gotten some sleep there would have been no way I would have made it through the day.  We were discharged at 10 am as we had an appointment at 1130 for him with MHMRA on the other side of Houston.  We had to meet with three different people there and that appointment.   Which took 3 and a half hours.  Joshua did very well at this appointment considering his current state of mind.  He tried very hard to keep himself in check and no one was injured.  After this appointment we contacted his doctor to find out if a bed had been arranged or if we were going home.  He gave us the information on what he had set up then it was a 45 minute drive to Kingood to get to that facility.  We arrived at about 330-400pm and were put in a waiting room with a bunch of other folks.  Which is not something that is a really good idea.  And folks just kept showing up in this room until there was no place to sit.  At one point Joshua told me one lady was too close and she gave me her seat so she was out of danger. He held it together even under those circumstances.  Then we started intake in a room with just us and the intake nurse.  We had him laughing in that little room pretty good for the next few hours.  He was a joy to be around with no aggression.  At about 900 we were taken back to the unit where he would be staying to finish his intake with a physical inspection so they would be covered for prior bruising which he had from blood draws in the hospital ER.  They mark down all marking on a chart.  The follow up questions had my wife wanting to provide a beatdown to a very stupid lady who just continued to ask questions that we had aleady answered.  All the time Joshua is realizing that he was gonna be put into this hospital and Momma and Daddy could not stay with him.  Finally all of the aggression that he had been holding back all day was unleashed on daddy.  And the lady continued while Joshua is yelling and swinging and providing a world class beat down on pops.  Some of this was due to the fact that he had not had his medication.  It is almost 10pm and he normally gets meds at 6pm.  Safe to say his body was really needing those meds.  We finally got meds in and got him to his room where he laid down and got very quiet.  Asking mom "Will you be back?"   She reassured him we would be back to visit very soon and he accepted that answer.  We left that hospital sometime after 10pm.  We had been on the go since 6am and got home close to midnight after stopping to get something to eat on the way home.  Needless to say we slept in this morning.

Night Report

Tonight has been unlike the past few. Instead of injection Joshua got capsules. They were slow to work but at last he has fallen asleep. The staff here has been very good toward Joshua. Considering they are not set up to handle everything he has going on. They even provided dad with a bed tonight. Joshua is not alone in his struggles. Mom and dad are right here with him. He has not been alone any time throughout this. His team here and his regular doctor are working together and listening to each other. Even through all his struggles he is still blessed to have people who care about him in his corner.

Smashed

So for today I can tell ya momma pushed him to see how he would react should we go home. The result was rather painful. She got hit very hard in the face. He almost knocked her out. She was pushing after I left. I know she was doing this to see if he was going to be able to function without me around. It is very clear he was not able to. By the way we are still in the ER. Absolutely no progress today.

Day Shift

Mom took the day shift. So you get a recap of our conversation. Josh had a pretty good day with few exceptions. So much so we were asked if we wanted to go home or continue to wait for a bed at the other facility. Of course we had committed to this process. Though that may change tomorrow if conversations with doctors go well. These geodon Shots are bringing ack some of his personality and giving him some level of control. Now we know we don't want to put our faith in a quick fix so it could be the ticket to buy us the time to address other things we have in the works. I will hang around in the morning to see for myself. He is sleeping soundly right now. We also took the restraints off his wrist and replaced those with wrist sweatbands I picked up at the sports shop. Since he seems to feel more in control with the restraints we thought we would try this to see if it would help and so far it seems it is working so far. I have been freezing in this hospital. I just got me some heated blankets. It feels great to warm the bones but these chairs suck. Joshua is so blessed he has around the clock mom and dad care even in the hospital. I will update as I find things to share.

As He Sleeps

Sitting here in the hospital beside his bed I watch him sleep. For the longest time he would wake us when his night terrors would scare him. But as I sit here watching his eye movement his hands twitch I know he is dreaming. I find myself wondering what it is that he is dreaming of that is so intense as to cause his eyes to tear enough for me to notice from several feet away. It has passed now but I wish I knew what was stomping through his dreams causing it.

Hospital Night

Well guys it's 235 in the morning. Josh has had a little something to help him sleep. Sent Paula home to rest as nothing else is going on tonight. Josh is sleeping very soundly. It sucks that we are looking at hospital stay and residential treatment. I know what I prefer but at this point it is not safe for him or us for him to be home. No parent should be separated from their child like this. Joshua does respond to family. But the violent outburst have to be under control. Clearly dad is getting too old to handle the aggression. The one thing I respond to very well is being able to have my children with me. Anyone who knows my story can attest that my life has been about my children. Having access to them limited or restricted will take a toll on me mentally, emotionally and physically. I do not like the chapter that this disorder is writing in my life at all.

Hospital

We have really had a shitty evening and night. As many of you know we are in the ER with Josh again. Everything began ate supper time. Joshua came out of his room for supper like everything was gonna be ok. This is also medicine time. When momma brought his meds he started flipping out. He took his meds after giving dad the proper beat down. The rage continued after the meds were in. I was thinking ok I can hold out til the meds kick in. However the aggression continued to worsen. He got hands free several times and was able to cause pretty good damage with hits gouges and scratches. In the end I got smacked in the nose, scratched on the neck and a gouge near the eyes. When the eye gouge came into play that's when I broke down and asked my wife to call 911. This is not something I go into lightly. I do so with a very heavy heart. Do I know if it is the best thing I am not sure but I can not continue to take all this aggression. We had one of the same emt ladies. She remembered Joshua and knew what she had to do to keep her team safe. Joshua really connected with her. He always does with pretty girls. We arrived without incident.. We went to the same ER as last time but it was like a new facility with new personnel. It took 5 sticks before they could get blood drawn. Not a good deal considering a blood draw with Joshua is like giving a cat a bath. Restraints came quickly we have been here since 710 and it is now 1130. Gonna be a late night.

Battle Tested

I was of hope that we would have more positive post in this blog.  It is very disheartening to sit and right post after post that are like this.

Joshua is still in a very rough spot today even though he was able to come to the livingroom and have lunch, was not able to stand it for long.  As is the case these days I sit and hold his hands with one hand.  I will hold his plate or cup with the other.  After he finished his food we were talking about what Paula should get from the store that he might like.  Deeper into the darkness he goes.  Swinging wildly at me trying to claw me with all he has.  Trying to get any part of my arm or hand into his mouth so he can bite me.

Mom was in a rush to get to us from across the room when Joshua kicked the ottoman across the room in her direction.  Sure enough it connected with her foot.  Even with me right there she still gets injured.

Why the hell can't pharmacies have medication in stock.  The one mood stabilizer had to be shipped in and won't be in until Monday.  This just all sucks so bad.

Driving With My 17 Year Old

Wife told me I needed to get my daughter some windshield time.  So this morning we went driving through the neighborhood.  I had asked Paula if she would rather do it as we knew Joshua was awake.  She said no of course because I think she wanted me to get some outside time.  Though she says its because I am the trainer of record.

After about 25 minutes of driving close to the house I sent her a message asking how things were going.  The response I got was "COME HOME".  We rushed home as fast as we could with our new driver behind the wheel.  We were only about three Texas blocks away.  I came in to find the boy on his bed with his wrist bands on and my wife in our room holding her waist and head.  She said it only lasted about 5 minutes but was very intense.  She got scratches and he grabbed anything he could get his hands on.

It was against my better judgement.  We know not to let our guard down and right now we are in a state of emergency guard so to speak.  I had resolved not to leave the house until he was more stable before today.  Now that resolve will have to overrule anyone's demands that I do so.  The safety of my family, all of them is first.  I hate that there are things I can not do with my family like drive with my daughter or even go to the grocery store.  Recreation for the family and dates for my wife and I for now are a thing of the past.

Ummmm Yeah Sure Ok

Today has been a good day and a not so good day all rolled into one.  Those of you with bipolar children know exactly what I mean by that statement.

He ate real good thing morning and he and I played in the living room for well over an hour before he decided he needed to go back to the safety of his room.  This evening he came out again and had a banana and a small bowl of tater salad.  The tater salad which is one of his favorites was a very small portion due to the contents of the recipe.  We are still dropping some weight which is good.  The drastic weight drop has slowed which makes me feel even better.

Now to the not so good part.  There was an incident near noon when he was in his room and I had stepped outside for a minute.  He pounded the front of his TV knocking it almost over and scuffing the wall pretty good.  By the time I got to him he was on his bed with that wild look on his face.  He asked for his wrist bands after they were on he was calm.  No one got hurt.

The next problem was near 530 when his sister went into the closet in their room to get something he had asked her for.  I could hear him ramping up on the monitor so mom and I rushed into the room and ended up wrapped up for about 10 minutes before we could get him calm and again he asked for his wrist bands at that point he calmed right down.  This one we were not so lucky in no one getting a few scrapes and such.  Even with no fingernails to speak of this boy can dig into your skin and make you think they are actually fingernails there.  He managed to get both of my hands bleeding enough that if he had seen it he would have been going off again.

As of this writing at 615 he is laying on his bed talking almost as though nothing happened.  From happy go lucky to total rage to happy go lucky before you could make a salad.  It is crazy.

Now these scratches are not like the ones he use to get me with but the placement sucks.....

Another Dr Appt.

Ever feel like you have been down a road before only thing that was different is the people who drove by going in the other direction.

Well we were back at the Dr today and told him all the things we were seeing and dealing with.  Its the same direction with different actors.  IE different medications.

So we started the day like with this list of prescriptions

Stavzor 500 mg 1 in the morning and 2 at night
Benzatropine 1mg 1/2 tablet tonight
Clonazepam 1 mg 1 tablet at night
along with the benedryl he has been on forever.

How we ended the day


Stavzor 500 mg 1 in the morning and 2 at night
Benzatropine 1mg 1 tablet tonight
Clonazepam 1 mg 1 tablet in the morning 1 tablet at night and up to 2 more PRN
Hydrochlorothyazide 12.5mg at night
and Symbyax 325mg 1 per day.
along with the benedryl he has been on forever.

I am going to have to break down and get my pharmacy license.

I don't feel like the questions were answered.  All this is, is and educated guess of what cocktail may work.  We have done this way too much.  We don't know why Josh is the way he is or what combination of meds it will take to make him less aggressive.  Bottom line "lets give this a try.  Next appointment with different group of folks on the 27th.

Rough Night

It was a good news, bad news kind of night....good news, Josh went to sleep early and slept in this morning. Bad news, he was awake from 11pm to 4am.  He woke up and had wet the bed.  When we tried to get him cleaned up, all hell broke lose.  We were able to get him cleaned up, changed and back into a clean bed, with the addition of a few bruises for everyone.  Again, no idea what set him off other than what must have been in his head.  I can't decide what's worse, the physical side of all of this, or the emotional/mental side.  What do you do when you don't know what to do?  I have strong faith in the Lord, but it's extremely difficult for me to understand why He's making us wait on answers in this situation.  I read a "humorous" devotional last night (not sure who thinks it's funny) and kept reading scripture explaining that the Lord will provide, rejoice in what the Lord has given you, etc.  Hmmmm, not feelin' it right now.

We have an appointment with the psychiatrist this afternoon.  We're not even sure how we're going to get him there, considering that he doesn't even want to leave his bed most of the day.  And then, how beneficial will it be?  How do we find the words to explain how bad this situation is, how helpless we feel, and how miserable we all are?  Here's hoping something good will happen....

Mom

Yet Again

Here we are right back to where we should not be.  The fighting is unrelenting. I can not just take the hits so we end up on the ground.  Holding him down.  All this because he needed something.  He needs we try to help and the fight begins.  Then I feel like crap because I had to protect us.  There are no easy answers to this disorder.  Every time the rage starts you dig your heels in and try to help him face the demons that run rampant through his thoughts. You help him fight the monsters that only he can see.  And then you collect your heart and search your soul and wait for the next one.

Support Group Question

A friend asked this after I posted about one of Joshua's "melt downs" or rages that he had.  It is a wonderful question for me to share the answer with those of you have never met Joshua or have not seen him in several years.

"Bryan,  How do these attacks start and keep happening to you?  What would he do if you "got away" from him went outside or locked yourself in another room?  Are you getting beat because you're trying to keep him safe during his rage?"

My response:

"Either I try to keep him safe or he destroys the house and stills goes after family members. This one started when he had to go to the restroom.  Joshua just like every other bipolar child is different.   He has the added disadvantage of having mental impairment.  He is 12 years old with the thought process of a 5-6 year old.  When he goes into a rage nothing and no one is safe.  Our house really is not set up with a "safe room" for him where there is no way he can not get hurt in a rage.  Even if it were and I were to back away he would still come after ether me or whoever is close to him.  I have a tendency of always trying to be the one who takes the brunt of it cause momma and little sister could get seriously hurt.  Dad can still take a beating pretty good.  But the heel to the head numerous times, because of where he was when it started and how I had to try to protect myself, takes a toll on me."

The best way for me to explain one of his rages.  It's like being in a wreck.  You see it coming but there is nothing you can do to avoid it.  You try to reduce damages by breaking or swerving but there is nothing you can do to avoid some damages.  For you to really understand how it is you would have to be here in front of him when it happens.  I say this but I am here in front of him and still don't understand it.  The eyes goes distant and withing seconds you are in a fight to avoid injury.

Birthday Blah

Well I had hope that Joshua would spend more time out of his room today with me on my birthday.  He came out for breakfast.  Sat for about 30 minutes with me and we played together.  Then he was ready to get back to the safety of his room.  Oh how I wish he could have stayed out here with us longer.  Other than the back and forth every time he picks his lip or nails or drops something off the bed where he is playing you would never know he was here.  Well that and the blankets up over the TV and the blinds for when he does come to the living room.

The Dr's have got to take this information and help figure out this puzzle.  I sure hope Paula being back home will help draw him out of his room.


Follow up from Mom......

He was overwhelmed with emotion when I came home, crying almost hysterically. Finally he was calm enough for me to give him his medication. About 45 minutes later he was very social and talking to all of us from the floor in his bedroom. We were able to get him to go the bathroom and he wanted to take a bath. He played and soaked in the tub for a looooong time! I brought Bryan banana pudding for his birthday dessert, and Josh was more than happy to share it with him. We offered Josh some pasta (one of his favorites) but he spit it out. It seems that some foods just don't taste the same to him. He came to the living room, watched tv and snacked on french fries with Daddy. When he was tired enough, he went back to his bed. We had a really good two hours or so with him! I'll be talking to the doctor on Friday about the difference between his behavior during the day and then after his evening medication. Hopefully some of the patterns in behavior will help the doctor figure out how to help him ;)

Rages

Joshua has been on edge most of the day.  He came out of his room for a few minutes this morning, but went back to his room very quickly.  About mid day he wanted to come out and play Wii.  That lasted until he got to the sofa and the tv was turned on. He started getting very anxious and wanted to go back to his room.

He has been picking at his fingernails and lip most of the day.  Several times I have had to clip off a fingernail that is already near the quick.  And had to give him a cool wash cloth to stop the bleeding on his lip where he has picked the skin raw.

When his sister brought me the cool wash cloth he threw it at her twice and he was trying to hit me.  What else can we do here?

Yet he is good enough to be discharged and wait and see basis as to what to do next.  This is enough to send me into rages.

320 Update

Josh wanted to go to the bathroom which he did and was successful in keeping his hands safe.  Then he decided he wanted more to eat so he came out of the bedroom.  He managed to get two or three bites in while I was still in the bathroom.  He became upset and hit his older sister on the arm.  Didn't hurt her but still.  He started getting more upset and wanted to go back to his room.  I was able to get him back to his room without further aggression.  He rarely goes after her.  Got to keep that guard up.

Normal - Abnormal Feelings

The day after fathers day all my facebook friends and family are posting pictures from their "normal" fathers day.  It makes me long for the days when Joshua was younger and was not quite as hard to handle as he is now.  He has never been an easy child.  I find myself somewhat depressed about how his entire day turned out.  I got to talk to all of my children,  they all know I love them and I know they love me.  Just seems like something was missing in the day.  There was not alot of joy in the house.

Sleepless Night

Now when my wife is out of town I never sleep well.  Josh finally fell asleep around midnight.  I finally fell asleep sometime after 1.  I was snoozing good by 130 when I heard him holler "I'm Cold!"  I get out of bed go to his room to find him completely uncovered.  Cover him back up and head back to bed.  This also happened at 3am, 445am and 6am.  Then my phone starts ringing at 830 in the morning.  I don't feel like I have been asleep at all.  Gonna be a long day.  Hope I can maintain my happy face for him.

Really Strange Day

Josh stayed in his room all day.  Mostly on his bed but now it will take a leaf blower to clean that room.  Back to ripping paper.  We were finally able to get him to go to the restroom and eat this evening around 920.  He was up only long enough to do those two things them back to his room.  Wow what a day.  Even with him in his room the amount of energy it takes to try to get him up and moving and around.  I guess it is more of an emotional stress.

Just now he started getting upset and I have the monitor here where I can hear him.  He thought he was bleeding to death.  I rush in only to find he has marker all over his hands, arms and legs.  Search all of his "nest"  all the blankets and pillows he sleeps around.  No marker.  We never did find the marker that caused all the mess.  Got him cleaned up put his bed back together and now he is quiet.  He still has the far off look in his eyes.  On a good note no restraints today.

He asked about his mom alot today...I am sure I will hear that for the next several days.  Give me patience...will need an extra dose of it for the first part of this week.

Dad's Day

Well I was fearful that when mom left to go to her conference that Josh would go off the deep end,  and be more than I could handle.  I am afraid he went the other way.  It is currently 3pm and though he has been awake for many hours I can not get him to come out of his room.  Even when I cooked him the things he asked to have for breakfast.  We got him his medication earlier today and we should be seeing some interaction with him.  He is not being violent in any way shape fashion or form.  Just laying there talking but not to anyone.  This is something that started while he was in the hospital.  I really don't think they got it all right.  There is something missing.  Our little social man is not as social as he was.  We had been reading about withdrawal from some of the medications he was on and the way they stopped them we could see this continue for months, according to the medications information.  It is very frustrating that he can not feel comfortable enough to come spend time with us in the living room.

Restraints

As much as I hate it the hand and ankle restraints stayed on him until bath time.  He really seems to feel more secure with them on.  Though his feet were not secured to anything he felt safe having them on.  The straps from his wrist were under a chair that he could have easily pulled free from had he tried.  This is not something I want him to get use to.  The only reason we resorted to them today was the fact that I was already exhausted and the fact that its going to take some time for my ankle to heal.  The more active I am on it the longer it will take for it to heal.

From restraints to the bath tub.  He enjoyed a nice long soak in a warm tub.  With no problems at all.

Mom was over tonight and she had a serious look of concern about the look in his eyes.  Those with Bipolar children know that look.  He seems to be cycling faster than Lance Armstrong.  And that is what she saw.  We see it almost daily.  But family members don't always get to see it.  I am glad she was able to see that look but I hope it did not worry her too much.  Love ya Mom.

Second Melt Down Today

We had another melt down which was pretty violent.  I decided I could not take too much more today.  I am getting a bit sore and mentally exhausted from the fights.  My wife got the hand and leg restraints and brought them into the room.  He saw them and started to calm down.  He held his legs up for her to put them on his legs and then held each hand out for her to put them on his wrist.  The second all 4 were on he was calmer.  Now in our living room there is really no way to secure these restraints.  He is laying on the floor half way between the sofa and a chair.  Both of which he has no problem moving around.  I looped the two from the hands one under the sofa leg and one under the chair leg very loosely.  If he wanted to get up he could very easy.  The ones on his legs are just there not looped to anything.  If this makes him feel more secure or more in control, then this is what we do.  It just breaks my heart that we have to do this.

2PM Melt Down

Josh had to use the bathroom.  Mom and I went to help him.  As we got him to the bathroom he went through the roof.  Flailing about he and I ended up on the floor with my legs wrapping up his midsection and minimum restraint on his legs.  Both arms secured with mine, or so I thought.  He shoved back pushing me closer to the bathtub.  My head now resting on the side of the bathtub and his head just missed the toilet rim. We are both in a simi sitting simi laying position.  Very uncomfortable for both of us.  Most of the time he is trying to sling his head back against my coller bone or head.  All of this for about 10 minutes, before he was calm enough to stand up and go back to the livingroom.  I think the reduction in depakote may have been a mistake.  Will have to talk to the doctor again on friday.  I think he may be seeing things that are not really there.

Fathers Day 2012 Reflections

As a dad we compare ourselves to our fathers or grandfathers. As a Dad I hope I have exceeded what others thought I could be.  With my first child I was learning how to be a dad, as when she arrived they forgot to leave the instruction manual with her.  I learned real fast.

I have a vivid memory of Jessica's birthday.  We had a Dr appointment as the time was drawing near. Wife was already in labor. As they went through the paces they noticed that her heartbeat would slow to a near stop.  We saw a look of concern.  Seems like our little tumbler had tumbled so much in there that she had the cord wrapped around her neck.  Emergency C section performed.  I was there for the entire procedure.  Yep guys I could not be a doctor.  She was such a beautiful little girl, and has become a beautiful lady.  I remember working three jobs and falling asleep at home with her in the recliner beside me when she was just a baby.  Nothing much came between her and her daddy.  As kids become teenagers it is hard to keep those things that make dad stupid at bay.  IE Boys.  She is in a good relationship now and is happy in life and that is all we want as fathers.  For our children to be happy.  She still gets to me on occasion.  Seeing her all grown up, I am proud of the young lady she has become.

Jessica at about 3

Jessica @ 23

Now when John came into the world it was a different story.  The doctor based his arrival on that of Jessica's and told us C Section was the only way.  So with his due date so close to my birthday guess what I got for my birthday.  Again I was there for the entire procedure.  Convinced now there is no way I could have been a doctor.  Seeing him for the first time was just amazing.  So now a boy is here.  Guess what everything I learned about being a father was now only half right.  Again the education came pretty quick.  John when he was a little boy could not stand to get dirty.  If you let him he would change clothes several times a day.  All it took was a little spot on his shirt and he had to go get cleaned up.  Jessica and John were both well adjusted smart children.  They did well in school and had tons of friends.  John always had friends over for fires in the fire pit in the back yard.  He hung with a good group of friends and got along with most everyone.  Today he can be found at Ft Bragg serving our country as a US Soldier.  With each accomplishment these kids reach dad is filled with pride.  I don't have any digital photos of John when he was a little boy.  But will try to get some scanned and update this at a later date.

John @ 17

John @ 20

Jordanne, my third child brought a whole new learning experience for dad.  She was born with a defect where her skull had fused prematurely.  The way it fused kept pressure on her brain.  There were days she would be awake for 24 hours then asleep for 24 hours.  At three months of age she underwent reconstruction surgery to her skull.  I was a total basket case throughout the whole process.  After surgery I was in the recovery room with her. He head swelled to what looked to be twice the size it was prior to surgery.  As she lay there with all this going on her eyes all puffy and swollen I knew these kids were my heart walking around outside of my body.  I was the last one she saw as her eyes were so swollen she could no longer open them.  As she healed and the swelling began to go down, I was there and was the first thing she saw when she could open her eyes again.  Now I know she don't remember any of this but I will never forget.  Jordanne is the thinker in the group of kids.  She is quiet and reserved until you get her on a stage or around her friends.  I think everyone who has ever met her likes her.  She is currently going into her Sr year and is in top three percent of her class.  And she has that same ability to bring dad to tears with the pride I feel in being her dad.

Jordanne @ 3

Jordanne @ 17

This brings me to my little man Joshua.  The first three children taught me much about being a daddy.  With Joshua all those things that I learned were just primary to the college education he was about to provide.  Joshua give me a whole new definition of being a dad.  Not only do you have all the normal things that comes with raising a child but a whole new set of challenges that many fathers are not able to handle.  He is a beautiful little boy and can have such a sweet personality.  Then there is that other side.  He is constantly giving me new insight into my own being.  Many times I feel like I am failing him.  But when it comes to being a dad I can say Joshua may need me more than the first three ever did.  Joshua has clung to each of his siblings in order.  Jessica was his favorite she graduated and moved on to bigger and better.  He was angry with her for a while but moved on to John being his hero.  John I think will always hold favor in his eyes.  Right now Jordanne is his princess.  All three of them have had such an impact on his life and I hope they know just how important that has been.  Everyday with Joshua is different.  You never know just what to expect.  But I do know my life is richer because of my children.  All of them.

Jessica, Johnathon, Jordanne and Joshua.   I love you guys so much.  I am so proud to be your Dad.

Another Late Night

Josh finally fell asleep sometime between 12 and 1 last night.  Even with all the fights he had with me yesterday he still had enough energy to stay up that late.  I on the other hand did not really have the energy to stay up late.  

Wife will be leaving tomorrow for a conference.  I was thinking of bringing in some muscle for the three days she is out of town.  I wrote yesterday morning that normally when it is just he and I we don't have many problems.  Then he decided that we were gonna have problems with just us here.  I know he has to just ache from being restrained as my joints hurt.

I do have an option that I don't want to use.  Arm and leg restraints like the ones used in the hospital.  I don't want my little man to have to endure that.  But in an extreme case if I had to resort to that, it is available.

What do you think?  If you were hurt from a struggle and your physical resources were all used up would you use restraints? 

355-415 Melt Down

Well I don't know.  Something outside made a shadow on the blind.  He decided he was gonna try to rip them down. Had to cover the blinds to get rid of the monsters.

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.

Fast Pace

Looks as though I am on the fast track to going insane.  Another aggressive attack.  All he wanted to do was go to the bathroom.

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.

Aggression / Dinner

Mom arrives home Joshua was having a good visit.  Josh wanted a treat for having a good day with no aggression.  Mom had something for him as she was giving it to him he swatted at her with open hand.  Second Aggressive act was throwing her phone at her after asking to look at photos on it.

On the plus side I had made chili for Frito pie. He ate about 2 cups of food for dinner which is the most he has eaten in two days.  We got a weight on him today and he is down to 202.6 lbs that is down from 215.  A gradual weight loss is ok but this has been crazy.  The medications he was on before he would eat non stop if you let him.  Now he is not hungry most of the time, and you have to encourage him to eat.

He has now been out of the bedroom for a little over 2 hours and has let other sit beside him on the sofa.

Adult Cheat Causes Small Success

Ever start doing something to draw a child into an activity.  Thats what we did.  Joshua loves playing wii sports.  Bowling in particular.  A little before 4 I had the girl turn on the Wii.  Within minutes Joshua was in the living room with a controller in hand.  This has been going on now for 47 minutes and he has been excited to be with us, and play games with us.  He has worked up a bit of a sweat with bowling.  When mom gets home I hope we can get him outside in the pool for a while.  We have seen a little of his old personality since we brought out the controllers.

Low Activity 1-2pm

Was finally able to get Joshua to come to the living room about 1pm.  He ate one chicken nugget,  6 Cheetos, and had less than a full cup of fluids.  This from a boy we use to have to set a timer for a next snack or meal.  He did use the bathroom while he was up.  Less than 200 CC's after drinking last night and this morning.   I have called the Dr and waiting on hearing back from him.  He lost 13 lbs in the week and a half he was in the hospital.  I may put him on a supplement if he doesn't eat a good meal by tomorrow.  Of course I have to talk with his doctor first.

Nooner

It is noon and Joshua has yet to come out of his room.  He is awake, I have been in many times to check on him.  I have asked him several times to come into the family room,  go to the bathroom, come have breakfast then lunch.  He will not get out of bed.  Can it be that it just feels too good to be home or is this a continuation of the behavior he was displaying in the hospital.  This is alarming.

He shows no aggressive behavior when I go in his room and talk with him.  I will continue to try to get him moving so he gets some activity.

Scream In The Night

After is took so long for Joshua to fall asleep, I was worried he would not rest very well.  As you recall he was spending hours and hours in his room in bed at the hospital so he was not doing anything that would tire him out.  Around 11 last night as we had drifted into sleep ourselves he let out a blood curdling scream like he was under attack.  After I peeled myself off the ceiling we went to check on him.  He was sound asleep.  There was not another sound from him all night.

Ok Not Our Son BUT - Trip Home

We rode all the way home with no incidents.  Other than the squealing which was at almost every turn.

Arrived home at 645 pm
658 Joshua had wild look in his eyes.
700 medicine
715 big bowel movement
723 wanted bath.
738 wanted to go to bed
747 wants his other blanket.  It had to be washed along with all the clothes he had at the hospital this was the first peep from him since he layed down.
805 completely uncovered wanting blankets stacked on him.  Of course he will be uncovered again in a few minutes because he is not sleepy.
809 conversation through door about a blanket he said he lost.
816 continued conversation through door about a hodgepodge of things
You will notice no where thus far have I mentioned eating dinner. Hope this comes back just not to the non stop extent it was prior to the hospital.
922 It appears he is asleep...We are not gonna take a chance we are gonna hit the hay just in case.

I know this is different from the post you have seen in the past.  Gonna have to figure out a better way to record the events.

At A Loss

I am at a loss.  As you read in the previous post Joshua hit his mom with all he had.  The staff is relating that directly to a shower that Joshua had some 30 minutes before we arrived and the hit was near the end of the visit which was an hour and thirty minutes later.  So a two hour delay on aggression.  Sounds like a crock of shit to me.  Sorry I have kept this blog so clean and now it starts to come out.  I am so disappointed in this outcome.  Basically they are saying that they are not equipped to manage this situation where he is now.

I have a million things running through my head that I could write in this blog right now.  But this has me so sick to my stomach I can not bring myself to write more.

Square One

Certainly did not think this blog would be written as it is tonight.  We were told today they were not seeing the violent tendencies and was not really not much they could do for him at this point.  With that they were getting prepared to send him home tomorrow.  Of course we have not seen the little boy we normally have since he has been in the hospital.  There has been so little progress we were beginning to question ourselves.

Tonight we went for our daily visit.  Mom, Grandma and I were going to make sure little fella had family all around for mealtime.  We took some of his favorites but when I went and got his tray of food he decided he liked it and cleaned his plate.  We had a pretty good visit with him cutting up kinda like his old self only a bit younger.  But he had a sparkle in his eyes. We visited for an hour and a half talking about what he wants me to make for him when he is able to come home and girls of course.  He loves the pretty girls.

The care given is still in question as a pair of shorts given to us to put on him was soiled.  I know no one can take care of him like mom and dad but we do expect his clothes and body to be clean.

As mom was explaining to the staff about his shorts Joshua left my side went straight for mom and pounded his hand right across the side of her head.  I was caught off guard because they had not seen the violence and I let my guard down.  I felt so bad as my wife held her head in pain and Joshua was taken from the room.   The stress from this of course settles in my neck and I end up with a matching headache.  I could tell that he really hurt her but I could also see that the hurt was deeper than just the smack to the head.  She had gotten to a point to accept that just maybe he could come home.  This for us dashed all hopes that it would be tomorrow.  We can't bring him home like this.  As soon as he got in the car for the trip home would be just like before.  I just hope this can be taken into account before they decide to discharge him from the program.  He is not stable.

I am thinking maybe they should call in a consult with his normal doctor.  The one who has been seeing him for the past 5 years.

New Edition - Scary Times

I just called to check on Joshua and was transferred to his Dr.  He is still choosing to stay in his room.  They have taken him off of 1-1 supervision.  They are talking about sending him home tomorrow.  The only thing that has changed with his time in this hospital is his personality, and the direct aggression.  But they are not pushing him to do anything.  Most of his days have been spent with him in his room in bed.  So they really don't know how he interacts with others.  But they are going to send him home because he seems depressed when he is not in a family setting.  He will only eat when mom and dad are there.   How is he going to react when something is required of him?

Basically they are telling me that this hospital is not a good fit because they work with the acute situations and he has not presented the violence that we had before he was in there.  This scares the crap out of me.  The unknown of how he is going to be when we get him home.  His mental age has decreased while in the hospital as well.  Is that just the depression of things being so far out of the normal for him?  I asked all these questions and did not get a solid answer.  Basically I feel like we are bringing him home on a try and see situation.  She says if he reverts when he gets home it will be easier to get him readmitted.  I don't like the try and see type medicine they are practicing.   I will be glad to have Joshua home but worried for everyone's safety for the next couple weeks.

Need Improvement

We had a good visit today with Joshua.  We have been told day after day that he will not eat the food they have at the hospital.  Guess what.  Dad offered him the food they made at the facility and he ate.  He was very hungry.  But with him not eating regular his stomach has shrunk so he can not eat like he did.  Which can be a good thing.  He sat and ate and chatted with us for quite some time.  Then he wanted to go back over by where his room is.  They have a tv in that area he watched about 10 minutes of Scooby Doo then wanted to go to his bed with about 15 minutes of visiting time left.  He did love on us quite a bit, which was nice.  When he was ready to go to his room we told him we would be back tomorrow and he asked if we would bring chicken nuggets. Of course we will.

Now I said this was a good visit, however.  We were told he had a shower 20 minutes before visitation but yet he smelled like he had not had a shower in days.  His shirt even smelled sour.  They still have not found all his clothes.  I know no one can take care of him like mom and dad but don't lie to the parents about what he has and has not done.  Cause mom and dad know.  I would prefer to spend half my visit time making sure he is clean than for someone to tell me something was done and it wasn't.  Of course I called them on this.  I just can't wait till he is stable and home.  To think he is not getting his basic needs met sickens me.

The last hospital stay he had was over two years ago.  I told the male nurse at that hospital on the day I picked him up that it was a good thing Joshua was in the room or someone would be getting their ass beat.  I had to clean him up to bring him home.

Just keep Josh in your prayers that he stabilizes quickly.  We miss his personality.  The sparkle is not in his eyes.  I just hope it is not gone much longer.

Respite Day II - Grandparents visit with Josh

Today was our second day for us.  We went to College Station to show baby girl Texas A&M Campus grounds.  And to see a very dear friend of my wives.  It was a great visit with her and her daughter.  From there went went to another friends house to see them and how big their kids have grown.  It was another good visit with great folks.  After being gone all day it was nice to get back home and find out what had been going on with the little fella.

Grandma and Grandpa decided they would take a drive down to see him today.  I am going to write this as best I can with all the information I have after my call tonight to the unit.  Grandma skips around when telling about this adventure.  We did end up sending another changing of clothes after the hospital lost some of his.  We sent along some fresh fruit, strawberries.  Grandma and Grandpa did fries and chicken strips for his meal.  He was according to the hospital very agitated even prior to their arrival.  Which prompted a chill pill for Joshua.  He did get aggressive with the staff while the grandparents were there but somehow managed to eat about 75% of the food that was taken to him.  Keep in mind he still is not eating the food the hospital provides. At last weigh in he had lost 7 pounds.  Which based on his size is not a bad thing, but its 7 pounds in less than a week and doing it by not eating.  That is not a good way to drop weight.  Grandma said she felt like it was a good visit.  He is getting plenty of rest for sure as every time I call down they tell me he spent most of the day in his room or on his bed and is sleeping soundly at the time of the call.  I don't think he is getting enough to eat to have the energy to do much else.

There have been no med changes since they started him on Depakote.  I would really like to know what the next steps are going to be.  I feel kinda helpless in this process.

Respite

One of the things we are trying to do is have a little respite time for the three family members who are home right now.

Yesterday we took an opportunity to do something we are not able to do when Joshua is home.  That is a road trip where you just get in the car and go.  Our destination was not clear until we actually got where we were going.  We went up to Huntsville, TX.  Thought ya know we could show our daughter the SHSU campus and eat at a little hole in the wall bbq place that was featured on Food Network.  My wife had eaten there before but I had never had the opportunity.  Well I should have known first weekend in June was Graduation at the school. So our visit around the campus was short lived.  But she got an idea of how big it was.  The BBQ was pretty good.  I am really hard on bbq places as we do such a good job with that at home.  Here are a few pictures from the trip.

Disappointment

All I can say today is WOW.  I have felt very good about the care Joshua has been receiving.  Up to today that is.  Today has been a disappointment.

If you have been following this blog you know that we have been up to the hospital every day this last week.  Each time taking Joshua food and feeding him.  We were asked to keep our visits to the weekdays because the weekends were less structured and more chaotic.   Mother in law had called up earlier and was basically scorned for no one coming up on a day the doctor had asked that we hang back.  My wife called this evening and was asked if someone was going to bring clothes up.  The regulations are three sets of clothes which they was provided with.  So basically we were told that they had lost two entire sets of clothes.  I am beyond pissed with this weekend staff.  We go every night and feed him as he will not eat unless we are there.  We go every night and give him a shower as he will not shower unless we are there.  In the day when we are not there he will do nothing other than stay in his room on his bed.  One of the "advantages" is respite for the parents as well who have been taking the beatings.  We go through so many emotions when we have to leave him there.  We are doing what we are suppose to be doing.  We are following the Dr's request.  Yet we are taking two steps backwards for every step forward.

So far we are not seeing any other medicine changes.  I think they are going to have to re-evaluate the situation and soon.

Hospital Visit 6/1/12

As per Joshua's request Dad and Grandpa visited along with Mom.

Grandpa and I went back to the ward with a little something for Joshua that we had picked up on our way down to try to encourage him to eat.  Corn Dog, Apple Bites, Fries and Root Beer.  Joshua ate that so fast I don't think he even tasted it.  He had not eaten all day again.  He had a good meal and I could tell he really enjoyed every bite.  This does my heart good to see him eat.

He was bouncing off the walls with excitement.  Though I like to see him not being violent,  I would also like him to be a little more focused.  When we arrived at least he was not in his room laying down.  He was out in the common area watching TV.  And it wasn't Spongebob for a change.  After we had been there about 20 minutes Grandpa went back out to the waiting room so mom could come down.  We sat and chatted with Joshua for a few minutes,  then proceeded with our nightly routine of getting cleaned up and changing clothes.  He enjoyed a warm shower without any fuss whatsoever.   After the shower he wanted to go to the computer room.  By that time it was time for mom and dad to leave.  An hour and a half a day is just not enough time to enjoy your children.  He did raise a little fuss when we left but the staff said he settled down pretty quickly and did not need a shot to settle him.

When I just called for a follow up they said he was resting well tonight.

Sleep tight little Prince.

Mom And Grandma Visit Hospital

Mom and Grandma went down to the hospital last night.  It was a pretty good visit but of course Joshua is still ready to go home, according to him.  Mom decided since Joshua was not eating she would stop at the Golden Arches and see if he would eat a cheeseburger and fries.  I mean who does not like meat and potatoes right.  She was spot on.  He ate most of the burger and fries and some of the apple slices as well.  This is good news. So we are able to break his not eating on the 6th day.

On their arrival Joshua was in his room.  But not the one private room they had him in before.  He now has a two person room.  He is the only one in the room right now.  This one does not have a private bathroom.  He was laying on his bed, chilling in his boxers.   He had to dress before coming out.  He was excited to see mom and grandma.  He gave them the grand tour of his room showing them his bed.  He came right on out of the room to the common area and sat on the sofa giving hugs all around.  The McD bag sure excited him as well.  He was able to sit at the table and eat with grandma and mom sitting across from him.  As he was eating he was having some gag reflex.  Not sure what was causing all that.  He drank plenty of OJ with his meal.

Then it was off to brush the teeth and take a shower.  This at the suggestion of the head nurse.  The toothbrush really tears up his gums.  But was able to get the bleeding under control with a cup of cold water.  Josh drank a lot of water.  Mom said he was hyper in the shower kind of reminded her of washing a cat.  After the shower he was dressed in the new clothes we had brought him the day before.  Which he really liked, red basketball type shorts, and an m&m tshirt.  This boy loves m&ms.

They went back to the common area and sat to watch some tv with him but he could not sit still.  He kept leaving to go talk to some of the other people in the area.  He always likes the pretty girls and there was one nurse that caught his eye.  But by this point it was time to start getting ready to end the visit.  Josh was not happy with this but they were able to leave without incident.

The staffed thanked them for coming down for the visit.  Here is the sad part.  The nurse told them that most of the kids do not get visits from family on a regular basis.  I can not attempt to grasp how a parent could not visit their child as they go through this.  Children as young as 5.  Now I know the parents need breaks too but you have to support you child through this process.  You still have to be involved in the treatment plan.

The post visit call confirmed that Joshua did much better with this visit than he did with the prior one.  He did not have to get a shot to get him calmed down.

I think it was a fantastic visit.