A Sleep Safe Bed Fit For A Hero.



What a day.  After what seemed like a never ending battle, Parker’s Sleep Safer Bed was finally delivered.   Boy, is it ever  a beauty.

2012-06-13 01.20.25

We are trying to figure out the best placement. This room is actually bigger than the one Parker is in now. The idea is to figure out how to stick a twin sized bed in there too. As you can see we’ve been sleeping on a mattress thrown on the floor on nights we don’t have nurses.

2012-06-13 07.30.09

We’ve run into a bit of a snag though. This bed is often used by kids who are not as mobile as Parker.   Some understand the whole idea of staying in bed.   Some are not able to get  out of bed by themselves.

Parker chooses to ignore the whole stay in bed thing.  Kinda like his brothers.

Parker is also mobile.  Very mobile.

The reason God created duct tape mobile.

The reason I’m exhausted by noon mobile.

The reason….well, you get my drift.  No sides left down is going to be our motto around these parts.

2012-06-13 07.30.29

We need to figure out how to get all of the tubing Parker relies on each night from the machines to Parker’s body. These lines of tubing are NOT long.  After much head scratching we’ve decided that we are going to need to find someone who can cut an oval into the headboard of the bed so we can use that as an opening for Parker’s vent tubing, etc.

Of course allowing anyone anywhere near enough to actually make the cut out is nervous making to say the least. It’s GOT to be someone who knows what they are doing AND who knows how to seal off the edges of this tubing entrance to protect small fingers and make sure pieces of plywood don’t get into the bed as the tubing rubs up against it on a daily basis.

In other words we need a skilled cabinet maker or someone along those lines.

Anybody know anyone like that? Send them our way and we will love you forever…..AND make you both cookies.

How cool would that be?  Eternal love and warm cookies.


2012-06-13 07.35.08

Parker’s poop issues are…..uh….. firming up a bit, however the sinusitis is getting worse.  We need to get a head CT and then an OR time for some tune up work.  Keep your fingers crossed and send up a little prayer that we can get all the stuff that needs to be taken care of…..taken care of.

This Hero is way over due for a whole bunch of healthy.


  1. Lavender Luz Jun 18, 12
  2. taradara
    Jun 18, 12
  3. Jenny - Sugar Loco
    Jun 19, 12
  4. Ratna
    Jun 19, 12
  5. krlr Jun 24, 12
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