New Chapter - Hospitalization

I finally had to do it.  I brought him to the hospital to be committed.  I never thought I would be able to do this but I did.  It was one of the worst days of my life.

I could tell when he woke it was going to be a bad day.  He was going to have a short day at school so I thought it would be bad when he got home but we never made it.  He refused to go to school.  He hid from me.  Missed the bus.  And then demanded I bring him to school.  He kicked me twice, kicked furniture, and hit me once.  I just had enough.  So I got dressed and told him to get in the van.  He was very proud of himself thinking that he had got what he wanted and was on his way to school.  When he saw it was a hospital he was not happy.

He went to the back of the van and laid down.  I told him they would come out and give him a shot to get him in....that did the trick.  Once inside he was crying and begging not to do this.  Then he got angry and stomped on the top of my foot.  He was going back and forth between terror and rage faster than the pendulum on a clock.  I was falling apart....Dad was falling apart.  It took the two of us to pull each other out of there and come home without him.

Having his lunch, right before we left him the first day.

However, it has been such a relief.  Days of not worrying or fighting.  Days of no meltdowns or hateful words.  Days of peace and full nights of sleep.  I am ashamed to say that it has been very nice.

They want his diagnosis changed.  We are going to the Munroe Meyer Institute for an extensive study.  They want to have the autism label removed completely.  They believe he has autistic traits but that these are just symptoms of something else.  That something else is believed to be bi-polar.  We knew this was one of his diagnosis....it's on all the reports on him.  So maybe we are coming to an end of trying to figure out what it is and we can focus on what to do.

A visit...playing legos with Bernadette

 This has opened the doors to lots of help and intervention.  There is, sadly, little for autism. 

He also had another test done on his vision.  The news is not good.  They are setting up more tests for him to see what the next step is but his eye is getting really bad.  Poor little guy just seems to have one thing after another to deal with.

Joseph will be home tomorrow, Sunday afternoon.  He knows now that he must never lay a hand on anyone or he WILL be taken back to the hospital and they told him each time he goes back he has to stay longer.  We will see if this brings about any peace....at least for some time.  They changed his medications, as well, so we have some things to look forward to and hope for.  Thanks for all the continued prayers!

Results

The results of the MRI are normal!  Thank you, My Merciful Lord!  Now, what *IS* wrong?  I did not hear back from the eye doctor.  It was my GP and friend that called me today with the results.  So I should hear from the eye doctor on what he thinks and on what we should do.  However, I have my personal opinions.

I believe Joseph has always had this problem.  I have always noticed that he would rub that eye, sometimes it would cross when he was focusing on something, and he has always hit that eye getting cuts, scrapes and black eyes.  So I believe it is part of the brain damage that was caused by hypoxia at birth.  Or it could have even been caused from the fall from the tree.  But I will always believe it was from birth.  I believe that he is learning to read and to express himself so we are just learning of it. 

Right black eye, Christmas Eve 2004

So the good news is that our little camo-angel doesn't have anything extra wrong upstairs (and Lord knows he doesn't need anything else wrong!).   The bad news is that he has vision loss that can not be corrected.  How this will affected the rest of his life is yet to be known. 

Thank you for all your prayers, love and support.  I have no doubt in my mind that this good news is a result of all the prayers and God's mercy on our family.  Please keep praying as we sign the paperwork tomorrow to complete the process for his entrance into Boys Town. 

Tuesday

Joseph was very stressed once we got to the hospital this morning.  His biggest worry was whether they were going to give him the IV before or after he went to sleep.  He asked every nurse, every aide, and even the man that came to offer me coffee.  He was also very concerned about waking up during the MRI.  I kept telling him over and over and over that would not happen.  Cross your heart?  Yes, Joseph.  Hope to die?  Yes, Joseph.  Stick a needle in your eye?  YES JOSEPH! 

He was worried that his hospital gown was opened and showing his underwear.  I told him to stay in bed with the blanket on and it wouldn't matter anyway.  Then he didn't want the blanket on him because maybe an old man or an old woman had used it.  After I told him that there was nothing wrong with old men and women I assured him that everything was washed and sterilized.  Even the pillow?  Yes, Joseph.  Even the pillowcase?  Yes, Joseph.  Even the bed rails?  Yes, Joseph.  I realized from talking to him about old people that the Halloween garbage in the stores and in the yards is scaring him.  Now he thinks old men and women are scary!

Waiting for the funny drugs to kick in

His teachers at school gave him a "care bag" yesterday.  One of the three shirts they gave him was an LSU shirt which he proudly wore this morning.  All the nurses were asking about it and after repeating the story several times it came out that his teachers gave him a care shirt.  They all thought he was a cutie and could understand why his teachers are so taken with him!  There's that camo-angel act going on! 

Sleeping peacefully.....a rare sight to behold!

His MRI took over an hour.  They did two readings.  One of the full head and then one of the orbits so they could get a really good look at the eye sockets.  He was in recovery another hour.  And then in his outpatient room for another 2 hours.  So we did not get home until 1 p.m.  And so far no reports. 

Eating his Happy Meal on the way home

This is the part I hate.  When will they call?  When will I know?  I felt like being that squeaky wheel and telling them I was not leaving the comforts of their hospital until someone gave me the results of the MRI.  But after prayer I realized that God is attempting in His mercy to teach me the virtue (just one of several) that has always alluded me.  So, patience is on the menu.  A side of prayer goes without saying!

Hold Me, Jesus

"Hold me, Jesus, cause I'm shaking like a leaf.  You have been King of my Glory, won't you be my Prince of Peace?"  ~Rich Mullins

I keep listening to and singing this song over and over and over.  I am trying hard not to worry about the MRI tomorrow.  I try not to let my mind run with imagination and fear.  But I'm a weak mother who wants to cling to what is not mine.  I have to leave this at the foot of the cross and beg for strength in the days ahead.  This could be something so small and I am no different than the apostles in the ship during the storm.  In my storm, however, He doesn't even sleep.  He is here.  He comforts me.  He has given me the most wonder community to love and support my family. Praise to you Lord Jesus Christ!  Give me the strength to endure!

Please pray for us tomorrow.  I only ask that I have the strength to accept whatever it is that God is asking.  Blessed be the Will of God now and forever!  AMEN!

Yesterday was the last day of soccer and Joseph scored 2 points!  His team won 3-0 and he was the star!  What a way to end the season!!!!  He is excited about tomorrow because he will get a Popsicle after the procedure.  Amazing how the small things can make little ones so happy.  When do we learn to expect so much? 

I will be posting an update tomorrow as soon as I have one.  Thank you for all your prayers, love and support!  My prayer warriors are getting our family through these difficult days.  I don't know many of you but in the Body of Christ I know we are connected and that one day we shall walk together in His Glory.  God bless you all!

MRI

We are scheduled for Tuesday morning at 6:30.  He will have to be put to sleep so we have a pre-op in the morning with our doctor.  We are begging for prayers for our little man.  May God give all of us the strength to accept His Holy Will!

The Waiting Game

We had a visit today with the eye specialist.  He did not like what he saw.  We have no answers as to what it is.  It would appear that Joseph is losing the vision in his right eye but we don't know why.  It is something in his brain or the eye socket, nerves or muscles.  He is being scheduled for some tests at St. Elizabeth's.  I hate waiting and not knowing but I think of all the parents that go through so much worse.

He was so nervous today about getting the drops in his eyes.  They had to put some numbing drops in before they put the normal drops in.  I have had to promise him that the next thing he does will not involve drops.  I told him the truth about the IV, going to sleep, etc....he is fine.  Just no drops!

On a happier note, he turned 9 years old yesterday!  He asked for the same thing he has asked for the past several birthdays....animals!  He has always loved animals and every year it's like it is the first time he received them! 

Tomorrow we should have a date for the testing.  For now....we wait.

The Next Chapter

Joseph starting complaining about his right eye last week.  He was saying it was blurry and he saw two of everything.  He stressed his other eye was fine.  I thought that since the brain damage was to his right side and it affected everything on the left side this was simply an eye issue.  But then he told me that his ear was "beeping" and making noises....his RIGHT ear.  And then he came to me one day and said it felt like his head was "bleeding on the inside".  I booked an appointment right away!!!  We took him to a doctor that works with special needs children and to our dismay he sees 20/20.  It is a brain issue.  What is going on is yet to be known.  And so we start another chapter of this long story.

There are now 2 doctors consulting to see what our next move is going to be.  We could weaken the bad eye to the point that his brain thinks he is blind in it or we could strengthen it and try to get the brain to compensate.  However, this could be something more than scar tissue causing this.  I refuse to put into words on this blog what the possibilities are.  I am going to think positive and believe this is just another part of Joseph that makes him who he is.  They warned me about scar tissue from the beginning. 

He is doing so well in school.  He has so many friends.  I love picking him up at school and hearing all his little friends hollering "bye, Joseph!".  Why can't we always stay so innocent and not see the handicaps of those around us?  He is still playing soccer and doing great!  He says he can play soccer with his bad eye but not with a patch so he refuses to wear a patch.  I hope they don't suggest that treatment plan as we will have a hard time getting him to do it.

We will hear something on Tuesday or Wednesday.  Please pray!