Denver Diary Day 8: They say sleep is overrated...

Cade has always had some sleep problems.  Even as an infant, although he went to sleep well, he struggled to stay asleep because of his terrible reflux problems.  As he has gotten older, and especially in the last several months, sleep has become the nemesis of our evening existence.  It literally takes him hours to get to sleep at night, and he is usually awake after 4 hours or so.

Being here at the STAR Center has caused us to look at every aspect of Cade's sensory problems.  Because his regulation is so bad we know that his sleep patterns have been truly affected.  But knowing this certainly doesn't actually help us when we are in the throes of trying to get him to sleep at the end of a very long day.  And to top it off, since Kai is in the same room he has decided to jump on board with the "let's not go to sleep" thing.  Needless to say, Eric and I are at our wits end by the time everyone's head hits the pillow in exhaustion!

In exploring Cade's sleep difficulties we have become very concerned with lots of excessive movement Cade makes after actually getting to sleep.  Now all of our bodies might jerk or shake occasionally as our body is relaxing and we are settling down.  From what I understand, this is simply the neurons in our brain firing, especially after a particularly stressful or busy day, as our motor is starting to "shut down" as we sleep. 

Cade's movement has gotten much worse over the past several weeks, though, and has now become "seizure-like" -- many times his entire body will jump off of the bed.  This movement can last for hours, and if he wakes up in the middle of the night and goes back to sleep the movement will return.  Our concern led us to actually tape Cade sleeping last night in order to be able to use it as a reference and get some advice.

I need to tell you, I hesitated posting this video here today.  But I feel that those of you following this blog are truly vested in Cade and our family.  And in order to truly know how SPD affects him I think it is important that you see how he is affected.  I hope that in showing you the real day to day events that we are going through that you will be better able to both understand yourself and share it with others.  Let me also say that the video quality is such that, although you cannot see the extent of what I am sharing, you can get the basic idea of what Cade's sleep pattern has become.

In this video the movement appears to be only in Cade's legs.  While this is the primary area of concern we are also seeing excessive movement in his shoulders and torso, as well as clinched fists.



I did contact our wonderful Developmental Pediatrician back in SC to discuss this with her.  She was able to tell me that she has seen kids with SPD before with these issues, which was at least comforting.  In the brief explanation she gave me on the phone, apparently Cade does not go through the sleep cycles properly.  As with many aspects of SPD sleep patterns are exaggerated...and his time in REM sleep is also exaggerated -either not long enough or too long.  Because of this his motor is not able to "turn off" properly, causing his brain neurons to continue to fire.

She has scheduled a sleep study to be done on Cade during the 3 weeks that we are home from the STAR Center.  This will help us get a better look at exactly what is happening when Cade sleeps by having connectors on his head to measure brain waves and neuron firings.  This should be fun...I think I will need medication before we go to that!  But hopefully that will eliminate any worries of seizure activity that might be happening as well as help us determine if there is anything else that should be done to help him sleep.

So I'm not sure WHO it was that said sleep was overrated.  But around here right now we would actually pay to get some rest!  Please pray specially for Eric and I -- we are extremely frustrated and it is very hard not to let that spill over onto the kids. 

I cannot close tonight without asking for prayer for some dear friends we have met here at the Ron McD House.  We met Pam our first morning here while I was trying to cook breakfast with my two wired and very jetlagged boys running around the kitchen.  We have seen her and her daughter, Liz, each day since.  Liz has been pregnant with twin boys, and delivered last night.  One son, Parker, is doing very well.  The other, Brayden, has a syndrome called Hypoplastic Left Heart.  This means his left heart ventricle was not developed.  Luckily they caught his condition at 20 weeks and have been preparing for this day.  But the surgeries that he requires are daunting and he is nowhere close to being out of the woods.  Pam was able to say that a respiratory condition he also has is better than they believed it would be, but this family will be waiting for many weeks to see if little Brayden can make it on his own.  Please pray for Liz and her family, and for the new little brothers that just arrived!