Executive Decisions

Friday was our first full day at home.  

My main goal was to get a better grip on our new routine.

I didn't time it.  probably a good thing... it would be depressing.

I had to connect the stents to the leg bags for Owen to sit on the potty so that they didn't drain urine all over creation.  

Draining the stents in to the double diaper was "kinda" working.  But soaking the diaper quickly. When I got him dressed I thought I'd try to keep the leg bags on, since "technically" that is what they told me to use.  

It became obvious I was going to have serious issues getting two 3ft tubes and 3 bags to hang on Owen's short little legs.  

I decided to try the wheelchair. He was having so much trouble walking anyway, maybe this would give him some independence? 

Got it all configured.  this would work pretty well....

Except he can't sit at a 90° angle very comfortably or for very long.  and he had a hard time getting it around on the carpet.  10 minutes later I realized it was time for plan B.

I set Owen up to play Legos at the coffee table and he played there patiently as I tried 18 different ways to configure the bags on his little body.  Enter tears.

Executive decision by Mom:  screw the leg bags, we are double diapering.

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Owen was content to play for awhile but soon I caught him trying to walk to the couch... and he fell.  OUCH!   Yeah, we're gonna need some help walking for a while, buddy.

Put calls in to urology for our follow up appointment and to Turnstone to see if we can get some temporary physical therapy in a few weeks.  It just pains me to see him so weak.  This summer he has been the strongest he's been... probably since he was 3.   A few weeks ago I caught him WALKING up the stairs on his own accord.  That's a big deal.

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Eric came home from work at noon and worked from home so I could run some errands.  Owen wanted to lay on his bed and play legos and ipad.  there's no way Eric would be able to hear Owen if he needed something from his upstairs office.  So I hooked up my laptop in Owen's room and started Skype.  Yes. Yes I did.  Eric could talk to Owen and Owen could talk to Eric any time he needed.  Worked like a charm.  (I'll post a photo when Caringbridge stops being stupid.  grr.).

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in the evening we had our friends Jack and Angie come over and sit with Owen so we could go out for dinner.  It was nice to have some alone time.   Then we came home and watched the olympics with them.  

When I put Owen to bed he wanted to walk down the stairs!!!  I was shocked.  He was shaky.  I held him up the whole time, but he did it.

Amongst all the whiny "I can't do it's" Owen has these days, it was encouraging to see a glimpse of that determination I know he has in there.  He'll make it.  He'll get it back.

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Owen is happily playing trains upstairs on a pillow now.

We are going to Berne this afternoon to pick up the kids.  We'll take Owen to the parade.  It will be really nice to be all together again.

Thank you for your prayers and all your encouragement. 

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Owen has not seemed to have ANY (or very few) bladder spasms since we came home.  So we made another executive decision to not even start the Detrol!!!!!!  Sticking with the valium, but only had a 2 doses of that yesterday.  We'll back off that and see how it goes!

This makes us soooo happy!