Living in Jophies Jungle

noreply@blogger.com (Trina and Jophie) — Sun, 27 Jan 2013 06:17:00 +0000

Quickly I want to give special thanks to Sherrie Miranda Nelson, Tammy Payne, Danny Payne, Katy Jenkins Myers, and Connie Kincaid Franz. Your constant presence at our side was very difficult but necessary. God definitely carried us all as we surely could have never stood otherwise. Jophie needed us ALL. We cared for him in this world together and he was having nothing less but for ALL of us to car...ry him straight into the arms of Jesus. He's stubborn like that....

And special thanks to Pastor Trent Carpenter and Pastor Michael Long for your unwaivering faith, constant support and most importantly for running TO US and not away from us....Your messages at Jophies service was amazing best described only as "From God to our ears.....

It's hard to express how a funeral can be so amazing but it was.....I'm out of town for a while with friends. Pulling into their drive I received a text from Connie Franze. I think she best described what it was like so I'm just going to quote her and maybe you can catch a small glimpse of what we experienced...

Connie: "Wonderful, beautiful service! I think that was one of the best funeral services in celebration of a life that I have ever been too! Music was perfect. Comments and Sermons went hand in hand and I don't think they planned it that way. Only GOD! I was glad and honored to be there! Love you! Rest!"

One thing that stands out is something Pastor Mike said in the hospital room. Jophie has never walked or spoken and we were just discussing what his first words would be. Personally, I'm a bit concerned about this. We all are! I just know the little toad is blabbing all our secrets! After our little moment of laughter it got quiet and Mike said something that will stick with me forever.

"When Jophie spoke his first words......He spoke them to Christ!"

Wrap your brain around that.....
Who gets to do that??

He was a very special little boy. He touched so many lives and as Pastor Trent and Pastor Mike both said. "He may not have any awards, trophies, or acheivements hanging on the walls but, without taking one step or saying one word he managed to minister to a number to numerous to count."

My amazing son!.......If you didn't know him personally, Oh how you missed out!

And last but certainly not least....A huge thank you to my parents Gleah Malone Jim Malone and Rina Jenkins...Thank you for all your support, all you have done and continue to do and your help before at home....Thank you!

And to thee Volunteer Fire Department who over the years has done so much for Jophie from building his handicapped swing to all our little "help" adventures...Bees, generator woes, trees falling on our house and you last act of kindness....Carrying my baby boy to his resting place. Thank you all!

I could never name everyone so please don't be offended if I forget to mention you personally. Just know you all are in my heart and will never be forgotten for what you have done for us.

I'm including a link to the video slideshow that scrolled on a big screen during the 2 hour visitation as well as all the songs we chose to have played during that time as well. There was no funeral music nor organs but rather what Jophie and we all loved! A celebration of his LIFE! Hand picked music just for Jophie that looped during the visitation so everyone could enjoy them with us.

No drab colors, a beautiful baby blue resting place with baby blue lining and the cutest embroidered sea turtle with bubbles straight from the ocean! Beach themed cards of course , HUGE Bouquet of blue and white balloons, Mylar Scooby Doo balloon, and a Turtle pillow made especially for him from Megan, Anna, Laynie, and Lexie.....An aweseome blinkie pillow from his aunt Rina that he would have LOVED...A sweet Teddy bear from Jamie and Trena Combs(A former foster baby) and 2 special little notes from my nephews Wade and Luke Jenkins that were attached and sent straight to Jophie during the balloon release)

1. Audio Adnrenaline--Kings and Queens http://www.youtube.com/watch?v=U64bongHqYU

2. Big Daddy Weave--Redeemed http://www.youtube.com/watch?v=VzGAYNKDyIU

3. Building 429--Right beside you http://www.youtube.com/watch?v=mc_aMNdL35A

4. Casting Crowns--Already There http://www.youtube.com/watch?v=qrOotpSKOX0

5. Kutless--Even If http://www.youtube.com/watch?v=HqOkZiOb9u0

6. Kutless--Everything I need http://www.youtube.com/watch?v=zdGwQpyreh0

7. Mandissa/TobyMac--Good Morning http://www.youtube.com/watch?v=AnmWwudeqfM

8. Matthew West--Save a place for me http://www.youtube.com/watch?v=zbsBUf9VKyc

9. MercyMe--The Hurt and the Healer(We played this between Pastor Trent and Pastor Mikes messages) http://www.youtube.com/watch?v=SqBMNSuDf7g

10. Meredith Andrews--Not for a moment http://www.youtube.com/watch?v=XD0cvWImVjA

11. Newsboys--Your love never fails http://www.youtube.com/watch?v=_LkZwwD1zpE

12. Plumb--Need you now http://www.youtube.com/watch?v=0HtXIKvDLy8

13. Steven Curtis Chapman--Long way Home http://www.youtube.com/watch?v=l1p-QfgkLow

14. TobyMac--Me without You http://www.youtube.com/watch?v=fpZR5MGmVkM

I hope this gives you a little glimpse into his going home celebration and more importantly I hope it brings you some closure and helps you rest in knowing this is not goodbye but rather See you Soon! If you do not know Christ as your savior you need too! Especially if you wanna see Jophie again one day!

I can see him running, jumping, playing, talking and spreading that beatiful smile all over heaven!

Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing doesn't come

Thank you father for the time we had with Jophie and for trusting us enough to care for him!

The Lord giveth and the Lord Taketh away....
Blessed be the Name of the Lord!
All our love,
Trina and Jophie

Run to Jesus my sweet Jophie! No more pain baby boy...No more!

noreply@blogger.com (Trina and Jophie) — Fri, 18 Jan 2013 06:18:00 +0000

What a mess..............

noreply@blogger.com (Trina and Jophie) — Fri, 13 May 2011 19:07:00 +0000

Lets try this again.....During bloggers down time they must have gotten hungry cause my post was eaten! LOL

Due to a bureaucratic oversight Jophie and I are without income for an undetermined amount of time. Therefore I am selling everything that is not nailed down(No worries Tammy and the other nurses have Jophie chained to his bed;0))....Seriously, I have a link to my Scentsy sight. If you see anything you like just pm me with your order. All orders and payment needs to be in by this weekend.

http://trinamalone.scentsy.us/Home

I've also jammed "Jophies Closet" full of goodies for sale and am adding more as I get time....It's actually on my facebook.
http://www.facebook.com/media/set/?set=a.1951861886650.2116908.1545729168&l=373c7c125f

If you see something you like reply under that picture. First to reply gets the item. If you are local I can meet/you can come by or if your not local I can ship...Price does not reflect shipping but, I will ship as cheap as possible for you...

Jophie is well aside from his usual ups and downs. Still struggling with steroid ups and downs. Still no handicapped vehicle and still no wheelchair. My health insurance is cancelling at the end of this month. Jophies got cancelled then reinstated after I showed them the error of their ways ;O) And the biggest mess of all is the cancellation of Jophies income...HUGE oversight and probably one that will take some time to fix hence or "no income" for an undetermined amount of time....

What a Mess!

I hurt my leg back on March 22nd and I'm still not fully recovered from that. My bathroom/closet and bedroom flooded and it took nearly 6 weeks to get this moldy mess cut up and tossed....Insurance kicked in and bathroom/closet and bedroom are now finished but nothing is put back just yet. Still working 2 jobs and a 3rd if you count my photography shoots that I try and work in between everything else. One of my part time jobs stops at the end of each school year then picks back up in the fall...Both jobs are very part time and basically I took them to help cover costs of Jophies supplies/equipment uncovered by his medical....I'm very thankful for them.

We finally have a new nurse to cover Jophies 3rd shift. She will be with us a year in July. Our area seems to be stuck in a rainy/stormy pattern and has been for weeks now. Major storms last night with 3 hair storms and flooding so bad it nearly got into my house. Was a mess with more of the same tonight...UGH With all the storms nobody can get their grass cut. I tackled mine a week ago and it truly was a jungle with it nearly at my hips. After 6 1/2 hours I was exhausted and could push no longer....I still didn't get it all but it was much better except now it needs it again! UGH...I need some sunshine for sure!

Jophie has his yearly checkup with his ped in July...I'm anxious for her to see how much he's grown. I truly never thought I'd ever be able to say Jophie is being seen for his "YEARLY" when used to it was monthly and some times weekly.

Well thats us for the moment! Gotta scoot so I can list more items....

Keep the prayers coming for Jophie!

Trina and Jophie

Casting Crowns #6 Glorious Day (Living He Loved Me)

noreply@blogger.com (Trina and Jophie) — Sun, 06 Mar 2011 18:17:00 +0000

Still Alive.....LOVE this

Just us.....

noreply@blogger.com (Trina and Jophie) — Mon, 20 Sep 2010 01:14:00 +0000

Still putting one foot in front of the other.........

Busy as all get out....Not sure what day/time it is on most days as I wait for one day to end and the other to smack me in the butt....

THEN and only then do I realize 24 hours have passed...

Walking around in a zombie like state sleeping 3 hours on most nights and on the chance I get lucky I may get 4 and sometimes a rare 5 hours.....

Weekends I try to refuel cramming in as many hours of sleep as I possibly can so come Monday I'm fully charged......Most weekends that plan works

This weekend......Not so much

Look out Monday! Seems I'll smashing into you with my "low battery" light blinking boldly between my eyes.....Maybe I can find somewhere to plug in for a charge? If only it were that easy ;)

Jophies doing well and has been giggling ALL DAY LONG......He was able to sit up in the bed for a long period of time today as well as several other times as of late. I contribute that to the baclofen.....I just goosed him up by 10 more mg. at 9pm bringing him to his daily 60mg.......So far so good!

Fall is approaching quickly and with that I feel a shiver down my spine as my PTSD smacks me around a bit reminding of past nightmares.....I'm trying hard to push those thoughts aside so I can enjoy Jophie and the fall season for what it "Really IS" and not for what the past has molded and etched into my mind.....

Jophies smile and giggles seem to be helping me out a bit ;)

Today marks 3 weeks IN A ROW that I've been able to get to Church....First time in 10 years since I've been able to enter those doors.....I find myself pinching myself often checking for signs of reality verses a dream like state......

I'm happy to report that reality it is as I have left Narnia far behind.........

For now...(I really musn't shut those doors forever lest I need a quick escape from reality in the future) ;)

No current pictures of Jophie just yet...I have something for him to wear but he needs a hair cut(BAD) and I need a spare moment to cut his hair then another spare moment for his photo shoot......I'm working on it but time these days is very precious and on the days I do have a moment, sleep is my main priority so I can continue on with this crazy pace.....Phew!

Fall also rings in the season for Family Portraits/Soccer Portraits/Pumpkin Patch Portraits and YES even Christmas Portraits.....Still trying to fit 9 sittings in my cramped schedule before all the leaves are gone......Was hoping for one this weekend but things got all jumbled up and we were unable to work it in....Next weekend I have 2 scheduled...Crossing fingers nothing puts a cramp in those.....

Please continue to pray for Jophie as we approach this fall/winter season and for me that I can continue at this pace......

I NEED to.....I HAVE to

Trina and Jophie

Alive.....

noreply@blogger.com (Trina and Jophie) — Fri, 27 Aug 2010 03:14:00 +0000

That we are......

Jophie is well and we're gearing up for fall. Bacon boosters are looming on the horizon. I hear tale it will be included in the yearly flu vaccine making for only one jab. One jab is always better than 2.

Busy busy on the home front. School is back in session and so is my job. Feeding hungry munchkins each week among many other hungry mouths. Second job is in full swing as well making for one crazy momma always praying when I sit my butt in the car that I don't end up at the wrong job(Not that anything like that has ever happened)

I'm grateful for both jobs and the extra funds as Jophies needs are still very present. Praying I can hold out and continue pushing forward. It's only been 2 full weeks and I must admit I'm a bit pooped at weeks end. My body tuckers more with age and just when I think I can not take one more step....

I just remind myself that "This is ALL for Jophie" and the steps that once seemed impossible come easier one by one.

I'm off this weekend but I have so much to do and really no idea how I'm going to fit it all in...

Pool needs Baquacil, need to buy Baqua, pump needs to run for 24 hours and then closed for the winter..
My hair needs cut...
Paperwork needs dropped off to second job plus pick up check..
Go to bank....
Medipore needs picked up for Jophie....
Grass needs cut BAD/Need to buy gas for lawnmower since it took 6 tanks and 4 hours last time I cut it! UGH

Fingerprints STILL....

3 attempts and no luck. Now to make an appointment with education dept. who can accept as little as 2 prints(One from each hand) and they can do each digit individually whereas other places have to do all 4 fingers at once. For the record the tips of my fingers have a lot of scarring(Working in medical field for years/hand washing-germ-x-alcohol use) AND my hands/fingers are too weak to press hard enough preventing the prints from being accepted. Crossing fingers I can get an appointment and they can get at least 2 acceptable prints.

I'm hoping to get Jophie out a bit in the fall/cooler weather and a current fall picture. Will share when/if he's able and I'm able.....

Now I'm off as I'm nowhere near hitting the sack....Praying I can make it by 3 a.m

We shall see...

Trina and Jophie

........

noreply@blogger.com (Trina and Jophie) — Thu, 01 Jul 2010 05:10:00 +0000

Not much to say these days.....

Jophie is well aside from a little 24 hour "out of sorts" kinda day. A little boost of steroids/zofran/motrin mixed with a few extra duo nebs seems to have brought all vital signs back to "his normal" for now with a few extra smiles tossed my way making it possible to put one more step in front of the other.

Both annual doc appointments(Ped and ENT) went well(aside from his little foot getting banged up a bit during transfers) It's still a bit bruised but doesn't seem to be bothering him as much....

Baclofen has been added to his regimen of drugs.
Is it helping?
It appears so and at other times not so much...
The jury is still out....
For now we push forward hoping for good results..

Just realized I'd zoned off into whatever land it is I go to...
As of late I fear it's not Narnia....
If only I could find my way back...
I doubt I will anytime soon..

Anyone have a map?

And with that my brain has shut down refusing to dump the reality of its dark contents......

(Insert pink puffy clouds and fuzzy bunnies eating skittles and pooping rainbows here)

For visual effect of our "pretend reality" of course....

Tuckered......

noreply@blogger.com (Trina and Jophie) — Sun, 16 May 2010 01:12:00 +0000

I'm still absolutely zapped....

I was hoping this weekend would prove to "heal this restless/weary body"....... Not sure if that's happening just yet. I do feel better but not quite well yet.

My days consist of literally "hoisting" my body to an upright position.... Forcing myself to move has proven to be a daunting task and staying awake is even harder.

My neck hurts. My shoulders ache. My arms feel like lead. My legs feel like lead. I have no appetite at all. I look like a ghost. I'm dizzy beyond anything I've ever felt. You know that kinda "out o' body" dizzy where you move and your body slowly catches up later. I spent most of last night rolling around in living room chair fitfully with stomach pain drifting in and out of my drug induced sleep. I suspect the doxy is the culprit of my lingering plague like symptoms. At least that's what it seems like. Only 3 more days of the doxy and steroids. I long to toss them in the creek but, I know I must not stop lest this hooey booey black plague returns. I shiver at the thought.....

I have new sympathy for Jophie and his steroid monster. I've always sympathized with him knowing his little body was being ravaged by the effects of the constant roller coaster ups and downs as we struggle to find a happy balance that will keep him alive without killing him at the same time.....

I've only experienced 2 weeks of this and I'm a weepy/grouchy/jumpy/jittery/whiney butt mess......

Steroids!.......... Love em/Hate em

Thank God Jophie has been so good throughout all of this. Thank God he's not demanding in a "normal" kinda way. Granted he is "very demanding" in that he requires ALOT to keep him alive and going. His schedule would seem grueling to most. To me it's just loving Jophie.....

I thank God every day for Tammy and Lora. Without them Jophie and I could not make it especially when momma is flat on her back.....

Tammy works tomorrow. I'm thinking it's her 6 hour day. I'll be glad to have a little break again....

Next week I'm back to work full time working Monday through Wednesday so far along with a trip to Spare time(Sugar creek munchkins Scriptural Excellence field trip)/Baby Shower Tuesday evening(If I can get someone to sit with Jophie a couple hours)/Mints and tricycle to make for said shower/Family Fun Day with the Sugar Creek Munchkins for last day of school.....Will have to try and fit a trip back to WV to see my doctor this week for a followup and to inform her of all the "setbacks" I've had with allergic reactions and such....

Phew....Making me more tired just thinking about it all

Think I need to go figure out Jophies meds/food before I crash again in the chair.....I've really messed his food/med schedule up today...Imagine that

Hoping next week my body will rally.....My house is a mess and my grass hasn't been cut for over 2 weeks.

I HAVE to get back on track....

Off to assume the "slug position"

Trina

I think I might just live......

noreply@blogger.com (Trina and Jophie) — Wed, 12 May 2010 02:59:00 +0000

9 days later....
17 pounds down(and still counting) later.....
27 probiotics (and still counting) later....
72 benadryl(and still counting) later....
7 diflucon (and still counting) later....
3 Bactrim DS(Causing one ginormous allergic reaction) later....
8 doxycycline(and still counting) later...
21 prednisone(and still counting) later.....
1 thousand fifty hundred motrin later....
5 million two hundred thirty-seven and a half hives(with a few strays hangin' around) later.....
2 trips to doc later....
1 trip to ER later....

Stir in a few BP meds, inhalers and crazy pills + 1 nurse and 1 dear friend(who just also happens to be Jophies nurse)to keep your child alive and just for kicks keep you breathing as well!

Add all ingredients, stir well and you have yourself one certified looney bin...
(0 calories/0 Fat grams--Serving Size/As much as you can hold at one time)

Wanna come play with us?..

I dare you ;))

Now to survive...

7 more days of doxy.....
7 more days of prednisone....
a few more bazillion benadryl...
a few more bazillion probiotics...
1 trip to camden park(maybe if I can stay verticle for more than it takes to pee)...
1 fun day as SCCA...
7 days of my lovely uninvited visitor(I'll call her Dotty) who just decided to stop by this evening....
1 attempt to return to work by Friday with only 2 other "crazy notions" (From my own private Narnia) where I "thought" I was (Up walking around) and able to return to work but now with a somewhat "not so fuzzy head" realizes that said horizontal position wouldn't be the most ideal way to drive.

Sure glad Tammy's head was clear (NOT in Narnia with me) cause obviously I wasn't aware(Completely knocked out) that horizontal for 23 hours for 8 days does NOT constitute "being well enough" to work and even less the idea that I was standing verticle....

Note to self: Think of it all as just ONE BIG bonus!
Love those bonuses!

Kinda like getting shingles along with.....(insert any ole plague like illness you'd like here)

JOY.......

I think I might just live..

REALLY...I......DO........

~~Twitch Twitch~~

Rash? What Rash?.......

noreply@blogger.com (Trina and Jophie) — Sat, 08 May 2010 12:34:00 +0000

Ahhhhhh.....

You mean the one that pretty much envelopes my whole body. Gotcha!

CRaaaaaaaazy past few days and since I'm heading towards WV very soon I'll give you the short version...

Deoderant and me do not mix
Tried all natural deoderant with no antiperspirant
I might as well of stuck a hot poker to my pits(I'm sure it would have been less painful)
Seems I am now allergic to all forms(Joy....And I'm certain Tammy, Lora and the world around me will feel the same)
Then I shave....Break skin(NOT much at all) Used said deoderant still not knowing it was the culprit.
UGH
Lovely skin pet inhabitants that all seem to think we need exited the building into said skin breakage.....
Now we have fungus amongus living in their newly found home.(My left pit to be exact) And if you will recall ME and Fungus do not mix usually requiring looooooong periods of persuasion just to convince them of this. (With the help of skin pet killer of course)
ITCH ITCH
UGH
Travel to WV on Monday to see my doc...YEP you have inhabitants that have gone awry my dear(AND you have hives all over your back/sides)
Diagnoses of that....Systemic reaction compliments of my lovely fungus fellers...
JOY
Take this and this and rub this on and that and and and....
Yea Yea I know the drill...
Travel back to Ohio with "said cure" in hand(I had my doubts)
Worked Monday and Tuesday (Barely without falling over, puking or passing out)
JOY
Rested on Wednesday in one of Jophies comfy chairs...Directly under ceiling fan...pits pointed to the heavens....ceiling fan on high....drugged to the max and well just plain miserable
Thursday work again.......ONLY
It didn't happen....
Book fair at SCCA so knew Tammy would be there..
Stop...locate Tammy who knew immediately I was quite ill
She and her expertise(Those fancy little letters after name) informed me of this verbally now(If she were mute her gasp and horror stricken face would have sufficed)
I agreed as I staggered my way to kitchen sweating, shaking, fighting off the nausea monster and generally just trying to keep my body in the upright position
Gathered all said items Heidi needed for shop and tossed them to Tammy and Carla
Tammy calls Heidi and informs her of my dilemma and before anyone knew what hit them....
Out the building I went leaving only a slight taupe blur headed towards WV(Praying all the way I could just make it to the office...)
Worthy to Note: Tammy was going to drive me but my mind was going in one direction....WV
Phone was turned off so didn't get that message......
Instead she was productive and covered for me at Heidis.......Fed the Sugar creek munchkins too! Thank you Tammy....You know I love you ;)
Note to self: Turn volume up on phone because really it would have been a good idea to let someone else drive on that day....
Get seated in exam room and prop self up on anything that looks like it could hold a woman with "said skin pet disorder" who was about to topple over..
Enters my doctor...
Informs me I look "sick"
YEP.....
I'll take "Now tell me what it really is" for 100 Alex
Gasp and one more horror stricken face...
Blink......Blink
Clears throat...
Doctor?
Blink...Blink
Oh I'm sorry....Just weighing our options here...
JOY
Infected (Check!) Inhabitants still living in said new home (Check!) VERY ill(Check!)
Bug Juice(s) of choice on this day...
Bactrim DS.....Long steroid taper....More "skin pet" medicines(I think it's worthy to note that when not going awry or trying to change addresses these pets are "so I'm told" quite useful)
The jury is still out on that one......
Head back to Ohio with more "miracle cure" in hand..
Shovel boatload of said cure into pie hole and collapse in comfy chair.....
24 hours later.....(Friday to be exact)
Woke up 4 a.m.....bottom of feet ITCHING like mad
Realized itching potions were late....
Downed and rubbed on said itching potions(Otherwise known as benadryl)
Fall back asleep(Sort of)
Enters Tammy to work....
I hear nothing...
Zzzzzzzz
Finally I come to and realize it's Friday and she's sitting right next to me charting...
Phew! Glad someone took care of Jophies meds
Few seconds pass and I realize my face is itching....my eyes are itching...my feet are itching...my back is itching...
OK so everything is basically itching...
Tammy(with those fancy letters after name) diagnoses me with rash/hives most likely due to the Bactrim DS
OK so now what?
Lower back has been pretty much covered since Monday with a few other spotty places(from systemic reaction to the yeast in my body) but NOW....
Oh my....
Fall back to sleep after shoving more drugs in pie hole trying to dream only of things that are cold and don't require scratching....
Wake again at some point from drug induced sleep and realize its 2p.m. and time to help Tammy change Jophies trach collar...
Shift is over and she leaves....Gone "maybe" 30 minutes when I take a gander at yet MORE itching....
A close inspection revealed well ......
Rash, hives, splotches and anything else red you can imagine occupying just about every empty spaceI have except my legs...(For now)
AND.... those darn feet and hands were STILL itching....My feet on the bottoms is almost unbearable....
Asked Tammy to stop by and look AGAIN at my lovely rashes/hives(Thinking she will be quite happy for this to be over since it just occurred to me that being forceably subjected to view this mess might not be well enjoyable) My somewhat clearer head thinks that anyways... LOL
Tammy arrives to be subjected to this brutal viewing "yet again"... YEP more hives....Still same dignosis..Bactrim DS.....My eye spies her hands as she came bearing AAaaaaaaaveeeeno and food.....(Don't you just love best friends?) And it doesn't hurt that she has those fancy letters after her name either ;)
Climb in bath of Aveeeeeeno and can I just say I've not been in a bath tub for YEARS...I only take showers...
Fat woman in trailer sized tub, bad knees, very little squatting ability and clumsy to boot does NOT make a good combination.
I finally manage to sit(Kerplunk down with a splash) with no thought as to how I would pull my self from this watery, oatmeal floating pool.....
Let me just say it took ALOT of manuerving and positioning to get all parts submerged(Never at one time mind you)
AND...I did manage to hoist myself out fueled by visions of Monday morning arriving and Lora having to call Tammy to bring her key cause I wasn't answering door...Can you just picture it? Fat woman wedged in tub of oatmeal goo covered in hives all swollen and said nurses using Jophies hoyer to unwedge that mess! LOL Bet you woulda found some super human strength and hoisted yourself out real quick too eh?
Body is soothed for the moment.....more drugs shoved in pie hole and more feet itching and body itching and and and....
It's 9 a.m. now and hot shower I took was not wise.....All nerve endings are stimulated and all hives are standing at attention....( I know Tammy I know better but Ahhhh I could just scream from the itching)
Getting ready as we speak to shove more of (said cure) into pie hole..
Plan of action is to head to WV ....AGAIN
I HAVE to get this antibiotic replaced or I'm going to be in the same boat....As I'm typing this I can feel the pain returning as it shoots hot pokers through my arm, shoulder and neck.....OUCH
Wish me luck cause at this point I just want the itching to stop and the right combo of drugs to stay put without wreaking more havoc on my already "on edge" body...

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

noreply@blogger.com (Trina and Jophie) — Fri, 30 Apr 2010 07:08:00 +0000

Spring has officially hit Ohio
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'
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.
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.
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.
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
Van saga continues. VERY difficult battle.........Been fighting it a long time too.
Just pressing forward and praying Gods hands will guide in both situations.
Is very sore from today's latest "GRACEfullness".
Is very sleepy/tired/exhausted/pooped/BUTT dragging
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!
Girls actual birthday party is Saturday and AGAIN thanks for sitting with Jophie a few hours so I can go Jess.
Anniversary of Sean(my brothers death) is in the next day or so as well. Hard to believe it will be 7 years.
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.
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.
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"
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".
Going to open pool soon and looking forward to lots of fun time in the water/grilling/wienie roasts this summer.
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.
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.
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".
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!

The Naked Chef and Jophies Birthday Pictures

noreply@blogger.com (Trina and Jophie) — Mon, 12 Apr 2010 04:16:00 +0000

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

Birthday Boy

noreply@blogger.com (Trina and Jophie) — Fri, 09 Apr 2010 06:37:00 +0000

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

Easter....

noreply@blogger.com (Trina and Jophie) — Sun, 04 Apr 2010 22:20:00 +0000

Jophies still snoozing.....

No pictures and no help today.....

Hopefully I'll have some this week of Jophie....

Nothing special at our house today....Just another day

I pray everyone had a Happy Easter with family and friends....

We can only dream of those things......

Christ is Risen!
Happy Easter

i ♥ faces - Week 13 "Dramatic B & W"

noreply@blogger.com (Trina and Jophie) — Mon, 29 Mar 2010 09:12:00 +0000

Not much I can say about this one except gorgeous.......

Now go check out everyone else and their Dramatic B & W work! i ♥ faces

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

noreply@blogger.com (Trina and Jophie) — Sat, 27 Mar 2010 02:23:00 +0000

Looooong weekend coming up...No help basically aside from a quick trach change tomorrow
Jophie is well aside from needing to go bathroom.....Hopefully things will begin moving this weekend....Drugs on board
After one week of Amox followed by Clindamycin I finally was able to get my tooth yanked....Bloody mess this evenin' but I've managed some cheese puffs and motrin round the clock so all is well...One more to be pulled at the end of April and a few more fillings then I should be able to get fitted for my mouth guard(I'm a terrible tooth gritter during sleep and awake) So much so I've worn down the top layer of several teeth.....
Had my doc appointment after about a year...Blood work came back with some elevations and had those repeated......Stayed right on track with my weight after more than 2 years...Thats over 100 pounds I've kept off thanks to our cookbook...She was very pleased with orders to start back at the Y swimming to begin my decent towards another huge mark...Still no reductions on BP meds but we are certain we will be able too.....Patience ;)
Katy(A close friend) tells me I'm turning into a "high maintenance" momma ;)
Jophies birthday is just around the corner...No idea what the theme will be ..... Pretty much no help surrounding his day and after.....Will have to work all that out before I can even think about planning much less a day to have it....
Crazy 8 order arrived today.....Jophies birthday and an Easter sweater for hopefully some current Easter pics.....Now come on leaves pop out on our little charlie brown tree so we can use you as our backdrop! ;)
Still on the hunt for a 3rd nurse......It's exhausting
Still pushing forward towards our goal for Jophies vehicle.....One school lunch and one doctors office at a time...Slow but steady as we go......
Belly is rumbling ....... Mashed potatoes/gravy? Soft eggs? My healthy modified version of Heidi's Pasta/Crab salad is calling my name but my tooth on this evening says otherwise....Or lack there of so I guess I should say gums? LOL

Off to find something to eat........
Talk soon.....

Trina and Jophie

Technically Tuesday...........

noreply@blogger.com (Trina and Jophie) — Tue, 16 Mar 2010 07:59:00 +0000

Near the 4 a.m.ish mark at the moment. (And no that has nothing to do with the amish ;)

Appointment 1 done! After much poking/prodding/tap tap tapping/xraying dentist determines "it's infected" ya think? Antibiotics on board and a date for extraction with an order for 2 more extractions as well. By the time he's finished I'll be known as gumby.
Appointment 2 done! Appointment 2 done! Lots of squishing and mooshing and yet more xraying. The perfect "boob job" and now I have 364 more days of freedom from that medieval machine.
More appointments on the horizon....
Getting old requires lots of tune-ups.....
Jophie still seems a bit off but not as much. Only required zofran one extra time today and the temp seems to be back to his norm 95/96.....Watching him closely
Slowly will begin the stress dosing reduction. I didn't increase those steroids too much so it shouldn't be "too difficult" to get back to what we were at just prior to weekend.
Finished up dosing Jophie for the night and hooking up his water infusion.
Now just need to flip him to his other side/unhook Duo-neb breathing tx and I might could get a few winks before work tomorrow. (Need to iron shirt)
Working the rest of this week. Looking forward to weekend and "possibly" a movie. Depending on how jophie feels and how these antibiotics are treating me by then......We shall see..

And now I must go or I'm never catching any Zzzzzzzzzzz's

Spoke to soon...........

noreply@blogger.com (Trina and Jophie) — Sun, 14 Mar 2010 14:21:00 +0000

Bad weekend for Jophie with lots of interventions to sustain. Not sure whats up so watching him close.
Haven't slept much if any
Very busy work week coming up so praying we can work out the Jophie kinks before all that hits
2 appointments tomorrow so have to miss work on Monday
Wondering how/where I'm going to fit Jophie in if need be to see his ped
Thank God Tammy works today. I need an extra set of eyes/hands and opinion at this point

And now it's back to my second job....Jophies nurse

How's Jophie.........

noreply@blogger.com (Trina and Jophie) — Mon, 08 Mar 2010 03:12:00 +0000

That seems to be the popular question these days. Honestly I've had trouble blogging as of late. So many things that I really can't put out here and yet I still long to dump it all from my brain but haven't for fear of what might be twisted or judged in the wrong way. I've struggled with what to do and while doing so I've tried to fill up the spaces here with something that required very little thought or words. I guess I figured if at least "something" was here all those who love him would at least know we were still alive.

I think I've decided to start a separate blog where I can safely dump garbage from my brain without the worry of it being seen by the wrong eyes. I will be making it private however, I have made so many friends along the way and I would hate to exclude those.(You know who you are out there) So, if you are interested in following a more intimate/personal blog of our lives please email me and once all is up and running I will include you(At my discretion).

With all that being said I WILL continue to give Jophie updates here so what you've been used to will remain the same. All the birthdays, outings, illnesses, inchstones you name it..... It will still be here ;) I think the only difference will be alot of the personal information I used to so freely share will now be for selected eyes only.

Now onto Jophie news!

Jophie is good! The picture up top is current. He wasn't sick in that picture but was very sleepy. He had just been bathed and I didn't want to miss out on the opportunity to snap a picture of him clean! He does tend to be a "bit scrungy" these days! LOL

Jophies birthday is sneaking right up on us. I can't believe he's going to be 17! Holy Cow! Where has the time gone? He desperately needs a haircut, shaved all over and those teeth need some major work. He needs more suction toothbrushes which of course are not a covered item and let me tell you those buggers are pricey! So, we prioritize and get them as we can. In the mean time I have another "more affordable" plan that might just work till we can get some more. I'll let you know how that turns out (if it does) haha

Tonight he's a bit on the bothered side. Not sure why cause Tammy and I worked out all his normal everyday kinks earlier today. Soon he can have all his 3 a.m. meds which will help and based on how he's acting, I predict I'll be slipping in a few extra goodies to help him a bit more ;)

Life goes on with all the "this and thats" Jophie requires.....

We have part of his wheelchair in our possession with the promise of "customized seating" with just a phone call from me to the wheelchair guy giving him the "go ahead". I plan to put that promise to the test real soon. He says he will come to the house and make the custom seat here rather than us having to bring him to the office. I'm happy about this but also hoping we get what he needs. IF this type does not work he said he would try something different. Jophies back is so bad now that I'm really worried about any type of seating working. I guess we shall see. Once the seating is all sorted out the actual frame that matches his seat is supposed to be ordered. I pray it doesn't take as long as the seat portion has taken.(Nearly 3 years) Pathetic......

We are still pushing forward raising funds for his accessible vehicle. It's a slow process but we will not give up. I can't wait to be able to say to all you who have been so faithful to help us along the way..... "We have enough!" Won't that be a wonderful day??!! You WILL be the first to know and will also be the first to see!

For those who are new here we have current fundraisers running at all times down the side bar near the top right. Take a peek. You never know you might find something you like or need.

Jophies closet is going to be stocked SOON! I have a PILE of all sorts of goodies ready to go in. I'm taking pictures tonight and "hopefully" I can start adding items this week. I'll post when I've stocked it.

Myself I've been a busy beaver. It's a good thing too because winter just about does me in. I HATE it. OK so I do love seeing the first snowfall and maybe a couple more but then I'm DONE! It's so BLAH I can barely take it.

This week is going to be extra busy. We're catering for 3 doctors offices, Sugar Creeks School lunches of course and breakfast/lunch for our local MRDD. ACK! I think I start to twitch just thinking about it! I am however very thankful for that busy because with it comes a few extra funds towards Jophies wheels! Yay!

Every little penny is one step closer.....

I have a few spring photo shoots scheduled and we're also hoping to work in a spring photo shoot of Jophie that is AFTER we groom the scrungy little thing! LOL

OK gotta scoot! Lots to do still and very little time to work it all in before 3 a.m....

TTFN!
Trina and Jophie

i ♥ faces - Week 10 "Jump For Joy"

noreply@blogger.com (Trina and Jophie) — Sun, 07 Mar 2010 17:46:00 +0000

My Beautiful niece on a beautiful day doing what she loves best......

Dancing!

Please click on the picture to see the full beauty...

Now go check out everyone else Jumping for Joy! i ♥ faces

i ♥ faces - Week 9 "Hilarious Outtakes"

noreply@blogger.com (Trina and Jophie) — Mon, 01 Mar 2010 06:18:00 +0000

Somedays.....

The Outakes.....

Turn out to be....

The Best......

Pictures ever......

This was by far one of my favorite photo shoots. We had the best time and were literally cracking up pretty much the whole time. Despite all the giggling and goofball shenanigans, we did manage to get some really good pictures.

Now roll on spring so we can start all over again! ;)

Now go check out all the other "Hilarious Outtakes" i ♥ faces

i ♥ faces - Week 8 "Hands On Fun"

noreply@blogger.com (Trina and Jophie) — Mon, 22 Feb 2010 04:28:00 +0000

I fell in love with this picture and was thrilled to see the "hands on" week so I could put it to good use.

Adorable squishy little baby hands lying on her first bible.....

Now go check out all the other clever hand pictures i ♥ faces

i ♥ faces - Week #7 "I wanna Dance"

noreply@blogger.com (Trina and Jophie) — Mon, 15 Feb 2010 18:08:00 +0000

Another one of my niece. Edited in PSP. The location and day was perfect. The subject of course is beautiful so not much needed in editing. I just lightened up some of the dark areas. Sharpened a bit then added a sepia overlay.

Now go check out all the other edited versions of this picture i ♥ faces

i ♥ faces - Fix - It - Friday

noreply@blogger.com (Trina and Jophie) — Sat, 13 Feb 2010 00:13:00 +0000

Playin' along......

Original Photo......

Edited Picture...

I used PSP for my editing. I cropped the picture down and edited out the busy background then lightened up the right side a bit and toned down the washed out side a bit. I couldn't resist making those gorgeous eyes POP a bit more using a combination of freehand selection and the unsharp mask. I just LOVE taking black and white photos or turning photos over to B&W so again I couldn't resist. Last, I merged all layers and sharpened the entire picture.

Now go check out all the other edited versions of this picture i ♥ faces

Plum tuckered.........

noreply@blogger.com (Trina and Jophie) — Sun, 31 Jan 2010 01:26:00 +0000

Looooooong Weekend
Tammy is sick so had no nurse Friday
Lora is off this weekend so had no nurse Saturday
Called Lora to see if she could swing by tomorrow to help with trach change
Lora thinks she has a "sinus" thing going on(I sure hope thats all it is)
Tomorrow I need to check on BOTH nurses to see if one is able to help with this trach collar change
Jophies had a horrible weekend(High heart rate and just plain miserable even with every drug I could give him)
I've slept 3 hours since last Wednesday
Praying for a couple hours before Monday because I'm working Monday/Tuesday/Wednesday
Lets pray I don't slice and dice my fingers and try to cook them rather than the veggies ;)
Trying to line my photo shoots out for Spring cause the slots are filling up quickly(I have some carry overs from late fall due to bad weather we were not able to do them)
Jophies air mattress(Correction POOL FLOAT) has finally bit the dust BUT it lasted from last July 11 till now so much better than those expensive air mattresses home health was giving us and WONT replace now) Pathetic
Make note to order him another pool float
Been ever so busy the past few months
The holidays were same ole.....quiet/lonely and just like any other day for us. Was also very limited on help through the holidays. We NEED to find a nurse for this 3rd shift! Any Local Takers?? You must be an LPN or an RN. Contact me if you are interested and we'll talk.
Cooked for Jamie Oliver(The Naked Chef) just prior to Christmas but can't talk about it aside from that. Soon enough you will know why....Seems Rascal Flatts had a taste for our food too ;)
Trying ever so hard to finish up an order for a dear friend. My thumb was broke back a few weeks ago during our Naked Chef venture and once again it's all wonky. I WILL get this finished for you Laura! Thank you for your patience
Pray for our little buddy Jaxson

He has that big bad wonky virus called Human Metapneumovirus which is similar to RSV but a different virus all together. For the immune compromised child it is very serious. Currently he's in the hospital. His moms name is Lacey. I'm sure she would appreciate your prayers for little Jax. Lacey when things settle I'll link you to my my nieces full photo shoot. You mentioned you wanted to see the rest of the shoot.

Santa visited Jophie this year. He was the best/sweetest Santa ever!

I missed the best picture when he actually came to the other side of the bed. Jophie caught sight of him and was nothing but smiles till he left. Carolers from a local church stopped by and because of a little elf(Heidi - Spice of Life Catering) they brought Jophie a Ninja food processor to help with his Blenderized foods. A friend from online also donated a Magic Bullet to Jophie to help with his BF. Between the two we can do some serious blending. One day we will own us a Vitamix! For now the Ninja and Bullet have made things so much easier.

Thats us for now.....Well close enough cause I'm seriously pooped!

Now if only I can catch even an hour of sleep at some point.

Trina and Jophie