New Territory

We are entering new territory.  Drew is going to his first sleepover on Friday night.  All the boys in his class were invited to one of the boys house for "EPIC NIGHT"  He is to bring his sleeping bag, swim suit and nerf gun.  A new Nerf gun has been purchased with extra ammo.  He has been excited about this for several weeks.

I, on the other hand, have been pretty nervous.  First concern - there is one boy that Drew doesn't always get along with and he gets on Drew's nerves.  I worry that as the evening wears on and as Drew gets tired,  that the boy will push Drew's buttons and he won't be able to control himself and will get angry.  I also worry that as he gets tired the tics will get worse and it will cause issues. The kids have never really said anything but things are tame and as excitement and tired creep in the increase.

Don't get me wrong I am thrilled he is being included and is having the experiences that all boys his age should have.  I did have a long talk with him tonight about several things.  I told him no matter what this boy did, Drew had to hold  his temper and walk away.  I also talked to him about the after effects of a sleep over. Being tired and grouchy and increased tics are two big ones.  I wanted him to know what too expect.  He did have some hesitation after we talked but I told him that we WANTED him to go and have a most awesome time but to know there could be some extra tics on Saturday.  

He has been practicing with the new Nerf gun.  I will talk to the mom tomorrow and give her a heads up. It feels a little strange because I usually let Drew control who he tells and how.  Also trying to figure out how to handle evening meds.  They make him sleepy  and he will crash about 20 minutes after taking them.  Not ideal for an EPIC NIGHT!.If he doesn't get them at all he won't sleep. ARG!!!! 

I am sure i am over thinking all of this but that is what comes with entering into new Territory.

90 seconds with TS

The first time I truly understood what TS and the co morbid symptoms was like for a child was while watching a video given to educators on teaching to children with TS.  It can be ordered here 

The presenter has a son with TS and did an exercise for the educators to find out what it was like to live with TS.  I cried as  I watched.  I had no TRUE idea what my son was dealing with.  Yes I heard the words and it was explained to me.  Not until I attempted to do the following exercise did I start to have a light bulb go off in my head and said OMG what have I closed my eyes to.  How can I be the best advocate for my son if I didn't understand what he was going through.  This segment helps someone who needs an understanding for those who don't know TS,  Try the exercise as she does it.  When you are done think of Drew.
  Or as real as anyone who can have it for 90 seconds of the exercise.  You can go back to normal but a TS kids will keep on ticcing.

Something else people don't understand is the toll it takes on the body... Drew is in motion all the time  There is not a time when his body is not moving.  This includes when he sleeps.  Hard to sleep with constant movement.  I know teachers don't like it when I keep him home for a day or half a day to let him sleep.  His body needs time to recover when the episodes gets bad.  Some days are better than others.  some days are a nightmare.  He has injured himself with this tic but he strives to be normal.  He rockclimbs,tumbles, plays basketball, does regular kids stuff.

Watch the video, do the exercise and leave me a note as to how it went for you.  I would be interested to know..

Cathy

Transition

A month ago I posted this update.  I hadn't heard anything and was worried that this was going to be yet another debacle with this school district. I started leaving messages with the superintendent and the advocate.     The superintendent called tonight and after apologizing profusely for letting the ball drop, he started talking about the next 3 weeks.

The principal at the school Drew will be going to was just promoted.  That threw a monkey wrench in things.  We all want the principal who will be at the school to be involved in this transition.  The current principal will be over 10 schools, including the one Drew will be attending. The VP may be promoted to principal so she would be another possibility to oversee the the transition.  The third option presented to wait till the principal is named in the next couple weeks.  NOT AN OPTION.  There are only 5 weeks of school left and I will be gone one of those weeks.  (rough life having to go to WDW for training)

I did feel good that he wanted the new school totally educated about TS. He has done his research and now understands that there are probably many in the district who have this that they are not aware of.  If 1 in 1000 suffer from some form of TS than Drew is not alone. He did admit they don't have an educational program in place for teachers let alone kids to understand TS. Everyone knows ADHD, Autism  and so many other challenges.  But very few understand TS.

The superintendent was going to send out emails tonight to all team members and by Thursday have a plan in place to meet with the current principal of the new school, VP and new principal( if one has been named) Then the psychologist and IEP case manager from the new school will go observe Drew and meet with the team at his current school. Then, Drew will visit the new school a couple times to meet teachers and kids.  After all of that we will have a HUGE meeting with the team from both schools to finalize the IEP (again).  there will also be education for the staff at the new school of all of the parts of TS.  All of this before May 11. I am tired just typing it, let alone living it. At some point there will also be education for the students. I am assuming that will be next school year.

The rough part will be telling Drew.  He has had so much change in the last year and has just begun to settle in. The superintendent has assured me they have done this many times and most kids settle in well.  I have been rehearsing all of the positives for Drew so when we tell him, we can excite him about the change.

In other new - Drew got his CPAP today.  Anxious to see how he feels in a couple days after getting good sleep.

Mother nature is still menopausal.  We got  9 inches of snow yesterday and 4 more coming tomorrow night.  At least it got above freezing today to get rid of most of what was received yesterday.

Drew got a freestanding basketball hoop this past weekend. A neighbor decided to get rid of theirs since their daughters no longer used it.  Great purchase for 30.00.

another piece of the puzzle

Sleep has always been an issue for Drew. I should say waking up has been a problem for Drew.  I have always said he loves his sleep.  He is impossible to wake up.  We suspected sleep issues for a long time.  I have heard him stop breathing (apnea) when we have shared a hotel room.  I had mentioned it to doctors in the past.  But no one ever did anything to see what the issue was.

UNTIL we moved here and got hooked up with the children's hospital.

A week ago Drew and I traveled to Broomfield for a night.  It was not a pleasure trip but me found some fun.  Drew had a sleep study scheduled at the satellite Children's Hospital.

First we stopped for dinner.  We went to Gunther Toody's for dinner.  Drew was in heaven.  they had monitors with old Popeye cartoons on.  He didn't say much while he was drinking his root beer float

Then off to the hospital. After getting Drew hooked up to all the machines and ready for bed our night started.  Drew barely stayed awake while they were getting things hooked up so he was out cold.

I wish I had been so lucky.I could not sleep.  The "bed" for the parents is not a bed it is a slab with a pillow.

About midnight the respiratory therapist came in and told me that Drew had yet to go in to REM sleep.  He had been asleep three and half hours. That was the first clue as to the explanation of the sleep problems with Drew.  He also said that there had been some dips in his oxygen saturation. 

The RT came in at 3 and said Drew FINALLY had gone in to REM sleep and he could finally put a CPAP mask on him.  He immediately went into REM sleep.  They woke him up at 6.  The RT told me it took about 2  - 3 weeks for the results to be scored.

On the way home (after a Starbucks stop) I asked how he felt. He said he felt a little more awake than usual.

I was surprised when the sleep doc called Thursday.  Yes Drew has sleep apnea.  The numbers were astounding.  I am not publishing them.  We now know why Drew is IMPOSSIBLE to wake up in the morning.  

Tuesday afternoon Drew will be fitted for his CPAP.  We are hoping for improvement in Drew's sleep.

Stay tuned for an update once we see what happens