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

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Friday, April 30, 2010

A bullet kinda night........

  1. Spring has officially hit Ohio
  2. Cut grass today(yesterday now) and determined training wheels on my push mower might be a necessary addition while I'm behind the wheel. Just sayin'
  3. Jophie has been a bit "off" the last few days. Hit or miss really. Tonight another unhappy/umcomfy boy. Motrin on board seems to be doing the trick.
  4. Been feeding LOTS of mouths these last few weeks.(SO thankful still for the job. Many things had to fall in place/be perfect to fit our schedules/life. Was definitely a "God thing". Thanks Heidi!) Jamie Oliver and crew was a success. Glad he liked the food enough to request it again.
  5. I've discovered I'm clumsier than I originally thought. Seriously....Just call me "Grace". It's really a comic show around here so much so Lora has decided she needs to follow me around with a video camera because she "knows" we can be filthy rich from my dorkiness.
  6. Wheel Chair saga continues and as it does it gets worse and worse. Turns out "partial" chair we finally did get in our possession came from who knows where and belongs to "your guess is as good as mine" Wheel chair dude no longer works for company and can't be found. Of course no return calls from him. Orthotics place is doing best to help us out. Really they are and are coming this week to START PROCESS ALL OVER AGAIN. NO paper trail AT ALL aside from rejections from state due to improper paperwork/handling. This is SECOND time a medical equipment dude has caused probs like this. Now after more than 3 years we still have NO WHEELCHAIR that will work/new process will take ANOTHER 6-8 months and my nerves are frayed because of it. Just pray his current chair (that he's been sitting in SINCE HE WAS 10) will not just crumble into bits while he's in it(That is WHEN we take that chance) GRUMP
  7. Van saga continues. VERY difficult battle.........Been fighting it a long time too.
  8. Just pressing forward and praying Gods hands will guide in both situations.
  9. Is very sore from today's latest "GRACEfullness".
  10. Is very sleepy/tired/exhausted/pooped/BUTT dragging
  11. Twins birthday is tomorrow. Having a little "ice cream" party for their class at school. Thanks for sitting with Jophie for a couple hours Jess!
  12. Girls actual birthday party is Saturday and AGAIN thanks for sitting with Jophie a few hours so I can go Jess.
  13. Anniversary of Sean(my brothers death) is in the next day or so as well. Hard to believe it will be 7 years.
  14. Reconnected with former sister-in-law(Brothers ex wife) and my nephew. Haven't seen him since Sean's funeral. Was so happy to see pictures. He's grown into such a handsome young man. Looking forward to sharing in his life.
  15. Found a new nurse. Paperwork has been turned in and I'm waiting with baited breath to see if all falls into place. I dare not even get my hopes up as this "nurse thing" has dashed my hopes more than I can count but this one "really" seems like it's going to happen AND she doesn't have a problem with the schedule that we've been trying to fill.
  16. Seems we've been traveling multiple bumpy roads littered with debris that seems to just "jump" into our path along the way. I've decided I don't like roads littered with "unnecessary debris"
  17. Lots of "end of school" upcoming events that I'm "planning on attending. Praying this all works out as I "NEED" a smidge of a break. NO I NEED a HUGE break(A vacation to be more specific) but that's nowhere in the near future that I can see so for now I'll be "very thankful" for these "mini outings".
  18. Going to open pool soon and looking forward to lots of fun time in the water/grilling/wienie roasts this summer.
  19. Had another tooth yanked and 2 more filled. Fill like I've been punched on the left side of my face/jaw. Thank God for motrin.
  20. I've determined getting old sucks. This ole body seems a bit weary and worn down. No news flash but in "complain/whine mode" which seems to be often these days. The only difference now is I'm making you listen too.
  21. Soooo thankful for Jophies 2 nurses not only for what they do for him but for me as well. We couldn't survive without them and it doesn't hurt that we were close friends "first".
  22. Just checked on Jophie and all his numbers are good. 97 sat and 53 heart rate. Couldn't be any better so seems like a good time to exit and try to catch at least a few winks.

Now Mr. Sandman.....

Let's DANCE!

Monday, April 12, 2010

The Naked Chef and Jophies Birthday Pictures

Jamie Oliver that is.....

He's back.....

I'm not sure if I mentioned this in full detail or not but a few weeks ago when Jamie Olivers "Food Revolution" was being filmed in a nearby town we were asked to cater for him and his crew.

Spice of Life owned by Heidi Clark that is......

It was so much fun the first time and I was excited to hear they had called us back to feed them again....

They will be filming Monday and Tuesday so just a couple days this time but still fun times....

I can really appreciate what he's trying to do with the schools and everyone in general as it's exactly what we are doing with our "Meals 4 Wheels" cookbook. We as a society are stuffing our pie holes so full we can barely breath so why not do it with something good for us? It truly is a lifestyle change and no matter what you have in your head like "Ugh it's another diet food cookbook"....I can assure you the food IS GOOD. It works and myself and my friends are evidence to prove it. Granted I still have a ways to go but I've maintained for 2 years now and continue to drop slowly. My doctor is still very pleased and continues to promote the cookbook as well as my sons pediatrician.

If you have a moment check out Jamies Food Revolution being filmed locally. The show is awesome and I hope because of this people will start stuffing their pie holes with good food rather than greasy junk.

Now go grab yourself a carrot...:0)

Here are just a few pictures from Jophies birthday. He was so sleepy and really not in the mood for partying. He was perfectly content to sleep the day away. He felt good though and that's all that matters.

The Birthday Spread...


The Cake


Wondering what in the world we put in his lap


He loves his girlies and is trying ever so hard to see them


Sleepy Boy


Evidence of a smiley boy. It was short lived but a smile none the less...


And back to sleep shortly after this shot. He stared at his balloons till he dozed off...


Now I'm off to iron my clothes for tomorrow and a few bazillion other things before my night ends...

Trina and Jophie

Friday, April 9, 2010

Birthday Boy

We've come a long way baby.......

And a beautiful baby you were.....

You were not a preemie but you were just an itty bitty thing. So small that even the very limited preemie clothing and diapers we could find just hung on you...

I still have your first outfit. I'm betting that today it wouldn't fit on your big fat toe.... :0)

You weren't too happy with life at first.....

Little did we know through all the scowling and the screaming your little body was in agony from clonus and seizure activity pretty much non-stop....

I am so sorry we didn't recognize it for so long baby....The screaming and seizures would last for 6 months....

We were so new at this "special needs" thing and the medical community hadn't dealt with many babies who had your many complex needs...

Besides....

Guarded life expectancy and vegetable seemed to be favorable words to describe you...

I know, I know.....

Your little brain did look like swiss cheese on those blasted films...


And really there was no earthly way you could possibly see that much...


And you certainly couldn't track...


Or make eye contact...


Could you?



It really was impossible with what little brain tissue you had left...


Truly couldn't be...




And there is no way you could recall something like for instance a best friend like Elmo...



Nope!



Impossible...



It's hard to believe that only hours after this picture...



We would be at your bedside pleading with God to not take you just yet....You almost didn't survive this.



You shouldn't have..



But you did...After nearly 6 long months you woke up looking towards the heavens..



And smiling...miraculously sustaining no further brain damage..



We got the best Christmas present that year...You were no longer on the vent and you were alive..



You've flirted with death more times than I care to remember...



I've tasted it...



Over...



And over....


And over again....


It's been nearly 2 years since that dreaded time. The trach saved your life. It has prolonged your life and it has given you a better quality of life.

You could not have convinced me of that shortly after....

Today....Your battered and bruised. Your battle wounds and scars are evident. Your declining health slaps me boldly in the face. I hate the disease that wreaks havoc on your little body. I hate that I can't fix it.....

Yet I believe....

I believe one day your body will be new and without pain......

You will walk. You will talk. You will be healed......

These things I do believe.....

And even though I believe these times are very dark and scary...

I recall very clearly the night before that surgery. I find myself reliving it. I relive them all. I relive each and every moment you wrestled with death. At times I can barely catch my breath and my blood runs cold. Yet in the darkness there is light.

I find myself going back to those times....

Reading and reminding myself over and over to be thankful lest I forget...
To remind myself that I'm not alone...

To remind me of Gods grace and his love for us...

March 10, 2008
" As I sat here yesterday evening I had a very rare moment to catch my breath. Jophie was sleeping very peacefully. The rooms on this side of the unit had been emptied of all its little occupants all of whom were well enough to return to the safety of their parents arms. Parents who only weeks before were skipping merrily through life never once thinking they would be on this side making life and death decisions about their most cherished possession all the while entertaining thoughts of life without their child. Would they have believed that just days ahead they would be in this place? Most will tell you no yet here they stand on my side facing some of the very same monsters. They will leave here forever changed because they too have tasted death. They will leave here with a greater love for their child and things that once seemed important will seem trivial. Life as they once knew it will be changed and if asked they will tell you they are better because of it. I don't think there is anything more capable of putting things into prospective than the planning of your own child's funeral. Something I wish no one had to face.

And in the stillness as darkness began to fall I was reminded once again of Gods grace and his presence that is clearly etched in every shadow and orange hue. Just out the window a masterpiece painted just for me and directly behind me lying quietly in his bed another masterpiece created with the very same hands both perfect in every way."



The perfect reminder that I wasn't alone....

And again two years later it is days like these I live for...









Those days are starting to happen again.....

Easter pictures from this week:






Jophies party is today around 4. Alvin and the Chipmunks is his theme of choice this year. I just love those chipmunks too! :0)

No nursing today so I need to go as I haven't even had a shower. No food has been started and Jophie is needing cleaned up and dressed that is after he finishes eating.

Phew!

Gonna be tricky indeedy!

Happy Birthday my sweet Jophie!

I'm so thankful we've made it another year.

Yep!

You've come a long way baby and I know you'll continue to amaze and baffle the doctors with your ways!

Mama loves you baby!

Birthday pictures later.....
Trina and Jophie

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