Thursday, March 1, 2012

March 1, 2012

I am amazed at how busy I have become and how I have ignored writing on the blog.  It certainly isn't because there has been anything to write about. 

The kids are now nearly 11 years old.  Only 1 more month.  In March we plan to visit Olga and Vasyl in Huntsville, AL for a weekend.  We are all looking very forward to it.  We have skyped with them a couple of times and that was a lot of fun. 

Last night, Simon went to bed at 8:30 which is his normal time.  At 2:42am I woke to noise in his room.  I find out he's been awake since 1:33am and he was playing on my Kindle.  That is a big no-no.  And he knew better.  After checking my emails this morning, I find that he had ordered a very inappropriate video and a game from Amazon.  So that didn't make me happy at all.  He is wired.  Not the least bit sleepy and up jumping around. 

We have been adjusting his meds (Respirdal) because of him being diagnosed with Central Sleep Apnea in December.  He had a sleep study done and it was positive for this type of sleep apnea.  After reading about it, I became very concerned.  As well did the doctor (Dr. Amin in Cinci).  He wants to start the non-invasive testing first to see what we may be able to find out.  He had an EKG which has to be re-done.  Apparently the leads were backwards and the test was non-conclusive.  So Dr. Batsel-Thomas ordered another one for April 3 when we see Dr. Amin again.  The other thing is to start decreasing his Respirdal to see if that changes anything.  So we are in the middle of decreasing it now. 

Feb 28, 2012 with behavior therapist that is coming to our home.

Appt went well.  He seems very goal oriented.  Mike as him if there were any questions for him and he said “no, not anything else”. And he went to the garage.  So for the next ½ hour I was hearing all of the information from Mark and Mike didn’t.  I told him that I thought he really needed to be there regardless if there are any questions or not.  He just needs to hear what the therapist is saying.  That is why he is so out of touch with things.

Feb 29, 2012
Ms Brown called me to let me know that somehow Simon wet his pants into the floor.  But his pants weren’t very wet.  They confirmed it was urine.  I went to pick him up and he was extremely defensive.  Swore up and down that wasn’t him that made the puddle in the floor.  After much time went by and talking to Ms Rita, I believe that he pulled the front of his pants down and urinated on the floor.   
Later he was still very defensive and was acting very odd.  I tried to talk to him and let him know that if something was bothering him, to please know he could talk to me about anything.  He was still very defensive.  Over the course of 1 hour, he was in the bathroom 3-4 times for long periods of time.  He said he had diarrhea.  But I didn’t really believe him.  There was no odor.  About an hour later, he came out and sat on the couch and was acting very odd again.  Then I saw a green something on his neck.  I asked to see what it was and he pulled his neckline up to cover it and said it was nothing.  Then I asked again to see it.  After multiple times of telling him to show what it was to me, he did.  In the end he had drawn on his entire body with green and orange Crayola markers.  I had him remove his pants down to his underpants.  He was covered on the front and back down to his ankles.  There was very little untouched.  I asked him why and he couldn’t ever give me an answer.  He drew people, wrote “Abbey” on several places and lots of crosshatched lines, etc.  I was trying to understand what motivated him to do this.  Never could get an answer. 
He went to bed on time (8:30) after taking meds at 7:30.  His Respirdal has been decreasing by ½ mg at a time.  Originally he was on 1 mg in the am and 2 mg in pm.  Then it was decreased to 1.5 mg in pm, then 1 mg in pm.  Now it’s down to ½ mg in pm.  After seeing some changes in his sleeping, I decided that instead of decreasing to ½ in pm I would make It ½ in am and keep the 1 in the pm.  Just rearrange the times it is taken.  We’ll see how it works.

In Feb 2011 we applied for the "Michelle P Waiver" through KY.  Lots of paperwork, but was hoping it would be worth it in the end.  During the early summer we started to get denial letters.  After appealing it multiple times we were given a hearing in which we had to get an attorney to help us.  So $1000 later we are at a hearing.  Before the hearing even began, the state side said they didn't understand why we were all hear.  I told them about the denial letters we were getting.  Then he said "you were approved in Feb 2011.  The letters are for a specific service.  And all you need is to have the nurse do the evaluation and get it approved"  I couldn't believe what I was hearing.  Finally in December we were given a KY medical card for the kids as a secondary insurance.