Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12

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Tuesday, March 24, 2009

Hip Hop Jophie..........


Oh yea baby! I'm waaay coool!

The little toad couldn't decide which bling made him look the coolest!

He's so vain! haha

Personally I think he's cool no matter what ;)

We had another wonderful day outside enjoying Gods green earth........

Jophie managed to enjoy the outside for an hour again...Yay Jophie!

For those of you who follow us you know what an accomplishment that is especially after the past year that we've had. Phew! Makes me twitch just thinkin' bout it.....

I honestly can't even express how thankful I am for these moments even something as simple as sitting on the deck, drying our clothes outside or enjoying the spring breezes flowing through open windows and yes Swingin'....

Sounds normal doesn't it?

It is.....For most

For us however, we live mostly in the "abnormal" and thats OK.....

It sure is nice though to experience the "normal" every now and again.

Even if its only for small moments in time.....

Please hear me when I say....

NEVER and I mean never ever take for granted the health of your children. Never pass up those "normal moments" ....... Make time for them even if the bed has to go un-made, the dishes are dripping into the floor and yes the laundry grows legs and begins creeping into other rooms not that I would know anything about that ;)

All I'm sayin' is.....

Love your children and "really appreciate" what a gift from God they are because, one day you may wake up and they could be gone....

As for me and my house.....

Yes! We will serve the Lord first and foremost!

However.....

We also continue to dance and sing as though it were our last!
Sing Jophies Sing!

Have a wonderful day! We plan to enjoy another fun filled day(more like an hour ;)) on our deck or in the yard whichever he prefers. He plays the fiddle and we dance sp really makes no matter as long as Jophie feels well and we do it together..... ;)

Trina and Jophie

Thursday, March 19, 2009

Soakin' up some rays......

Yesterday we managed to hit the outdoors again. Jophie was likin' this day much better than the last course I "kinda" helped him out a bit with our teeeny little friend known as zofran ;0)

Whatever it takes to get this!


He does however tend to wonder from gazing ever so lovingly at me when a "certain someone" walks into his view.....At this point I know longer exist!


Who could it be? Hmmmmmm? Could it be his favorite red head? Yep! I love that he has so many people surrounding him that care so much for him. Tammy/Danny and the whole P. Gang are by far closest to him with the exception of me of course ;0) They were his mommy and daddy for a short period of time afterall. Besides, an extra mommy and daddy aren't such a bad thing to have would you say? ;0)

Now if Danny (Tammys Hubby) were to walk into his view Tammy and I would be no more important than the planks of wood on my deck! Yep! He snubs us big time when Dannys around!

Observe what I'm talking about......See it?

Oh yea we are no more than a vapor in the wind on this day back in the fall. Little Toad! haha

Today his feeling of happy go lucky is not so much. We've been on poooey patrol all day long. In fact we've been at it for several days now. Thinkin' I'm gonna have to drag out the big guns tonight. Nothin' new! Just another day in our life. ;0)

During the school year Tammy has to leave a bit earlier to pick up the twins so our time outside was short lived and Jophie was NOT wanting to come back inside but, you really need 2 when moving/lifting him so in we came. We got him all settled in the bed and lately when we stop something he loves doing he starts crying. It's pitiful really but at the same time I love it because first of all he's feeling well enough to actually enjoy what he's doing and second he's able to express that to me! Sad but happy at the same time especially when I can fix it which I did by the way. :0)

I tried sitting him up in the bed a bit which helped immediately. My thinking is Jophie knows when on his side he's going to sleep and at that moment he definitely was NOT ready for bed. I could tell it wasn't going to be enough and I knew I couldn't get him to his theatre seat alone so he could watch a movie SOOOOOOO....I brought the movies to him ;0)

Jophie enjoying one of his favorite movies! Madagascar 2! I had just started the movie and he was thrilled...

He's STILL watching it! Not sure but I'm thinking it's playing for the second time here...We knew he would love it because he has Madagascar 1 and it's by far one of his favs! The kid will watch it over and over again! Tammy bought him the sequal for Valentines Day! Thanks Tammy!

He didn't manage to make it sitting up the whole time....I had to lie him down so he could watch him from his side....You just gotta go with the flow of Jophie and his belly issues especially during those gotta pooooey times...

This afternoon we managed to clean/rearrange the area around his bed/under his bed and all the medical supplies around him. I even opened the windows to get some of this winter stuffiness outta here! Felt so nice! I can't do this very often because Johpie is so allergic to pollen in the spring and mold in the fall however, there are a few weeks before both seasons where we can enjoy the cool outside air AND I can dry clothes outside. We are in that time now hence all the laundry everyone keeps seeing strung all over my deck these days. The twins asked if they could stop at my rummage sale and buy something! hahahaha

OH and just in case you don't know this little trick I'll fill ya in....

If you open 2 windows in your house....One on each side of the house(Front and Back preferably) then, stick a fan in one of the windows making sure its backwards(blowing outwards) now turn it on high. It will suck ALL the heat/ winter stuffiness out of your house and at the same time will be pulling in the other window all the cool/spring/yummy smelling fresh air! Before you know it ALL the air in your house has been replaced! Ahhhh!

We did this all the time when we were kids at home. The only difference is my parents had one of those HUGE industrial fans and we had an upstairs. The fan was in the upstairs window and downstairs one of the windows farthest away would be open. It was cooler than air conditioning especially in the cool summer evenings and boy did it smell ever so good. Can I say Ahhhh just one more time?? :0)

It's nearly 11 p.m. now and all is well....No pooey relief as of yet but I still have a few more tricks up my sleeve ;0) For now Jophie is snoozing and eating all at the same time...He's so talented ;0)

I actually took a teeny break in the midst of this post to fix supper for Jophie and I. He needed some more blenderized food mixed up and it takes a smidge extra time to put it all together. The best part is once you get it all sorted out there's enough for close to a week if I calculate it right that is! haha

I never worry that he's not getting this or that vitamin/nutrient in his food because the formulas for tube fed kiddos are absolutely packed full of everything one would need meaning you can surive on that alone which Jophie has for gosh nearly 9 years! Personally, I just like tweaking things a bit adding my own special touches. I figure any improvements we can get for Jophie have to be a plus eh? ;0)

OK gotta scoot...I need to tackle whats in all the cubby holes of his hospital table...Tons of meds/supplies that need sorting...PLUS, bathroom is calling and so is Jophies timer.

Tomorrow is the first day of Spring! YAY! Have a wonderful First day of Spring!

Trina and Jophie

Sunday, March 15, 2009

Not one of my brighter moments???

Or so it seems......

Of course I could be entirely wrong.

One thing is for certain...This is either going to be the smartest move I have ever made or quite possibly the dumbest. Time will only tell and seeing as its nearing 6:30 a.m. and my head has yet to hit the pillow, I fear none of us are going to know before dawn....

Observe......


Nothin to strange about that picture?

Look closer......


Could it be the stilts protruding from underneath said air mattress?

How bout the not so inconspicuous step ladder sitting fully opened next to the bed??

No?

Still doesn't seem odd?

How bout the "at least" 3 feet of pedestal "UNDERNEATH" the odd looking stilts?

OR...

Could it be that your speechless because your jaw is still hanging to the floor and your eyes have bugged completely beyond their capacity??

Never fear you've not gone mad....

Tis I who is the mad one or at the very least I'm trying to be creative and utilize what I have on hand since we are wingin' it alone with no nurses this weekend :0)

And what happened to my "normal" mattress you ask???

Wellllll....

I'm so glad you asked!

It seems my elbow now has the razor sharpness of a newly crafted Knights sword and can I just say that the volcanic rush of wind that followed immediately after my elbow pierced the mattress nearly tossed me clean off the bed???! AND, lets not even mention that before one could manage to suck in their next breath of air, said mattress was flat as a flitter and there was poor pitiful me DEEP DOWN in the bottomless pit otherwise known as the waterbed frame! Yea that was a sight to behold as I longed for a crane to haul my fat butt outta that ravine!

Really! I do love sleeping on the ever so popular camping necessity otherwise known as the air mattress! In fact I sleep better than I have in years!

There's just one problem....

They only seem to be lasting me a few months with the exception of the one that just went Kapoooey Saturday mornin' very early mind you. I truly thought I was going to get a good 6 months if not more that is until the early mornin' "Razor Elbow Incident" ;0)

Anyone gonna be placing any bets as to what exactly is going to happen or NOT happen when I embark on this sleeping adventure??

How bout these....

"Will she actually be able to get in the bed even with the stepladder?"

"Will she forget how high she is when the alarm sounds and without thinking jump carelessly towards the floor only to find herself face down bloody nose smashed to the carpet?"

No?

How bout this?

"Will she roll over forgetting how high she is off the floor, or better still how many times will she roll out?"

Any takers?

I suspect or rather fear they all might come true in which case I'll be a limping, hobbling mess tomorrow that is IF I don't require any stitches!

They don't call me BooBoo for nuthin' :0)

Now off I go to try and capture at least 2 hours of restful Zzzzzz's! At least I HOPE they are restful!

I do see a trip to Walmart come Monday (the air bed section in particular)
For now I'm gonna brave the mountain! All 5 foot of me! Barely 5 foot that is as it also seems in my old age I've begun to shrink!

Lord help us all!

Wish me luck! haha

Trina and Jophie

Thursday, March 12, 2009

Test.......

Late night testing and maintenance......

Feed my Fishies