tuesday nite

Jons been in cold/hot pain..parts of his body are freezing and parts are hot..he didnt take his 4pm meds till 6pm due to the doctors and he was SO tired when he got home he slept in his chair..so hopefully its just because of that..

we did our first "flushed cath" procedure..i hope it helps his UTI..

Jon has been asked to speak at a GDC convention seminar thing on August 14th. BIG NEWS and HUGE recognition for him! YA!!! He had to write a 50 word bio and a 50 word description of his pressentation..it took us about 2 hours to do this..but its done now and we got it all faxed and emailed back to the people...WHEW! So now he has until July 24th to have it pretty much put together for a review, then he'll deliver august 14th after the Keynote speaker..hes VERY VERY excited about this..we also will put some business money into sponsoring this event so thats good news as well..

I feel like the days go by SO FAST..EVERYTHING takes SOOO long..cathing him is a 15 minute project, and now that we have to flush him with medicine..its more like 30 minutes...and then the pressure releases every 30 minutes that take 10-15 minutes, feeding him takes a while then its already time for another pressure release and before we know it its time for meds..ahhhhh...its now almost 11pm and im SO tired..were trying to finish him up for the nite..

i hope now people are beginning to see why jon is LITERALLY day by day..i cant really plan for anything..which makes life SO hard...

oh ya i called on the wheelchair because we were told when we left loma linda that it was going to take about 6 weeks to complete the chair...so i waited and here it is the 6 week mark..so i called the chair company - and they made the comment were waiting for an autho from insurance..so i call our case manager..they say they are waiting for a fax to come..anyway - come to find out NOBODY DID ANYTHING!!! rghghhghg..i was SO mad!! the chair person i essentially said "so what your telling me is you JUST NOW got your fax over to the insurance and they JUST NOW faxed it back so your JUST NOW going to start to put the order in so NOW its ANOTHER 6 weeks???" she said..essentially. i said "that is TOTALLY unnacceptable!" i asked her "so who's desk was it sitting on, who didnt do ANYTHING about it or follow up on it? i didnt realize that was the CUSTOMER's job!" she said, "well i dont know what your looking for?" i said "well for starters how about an im sorry!? my husband has been out 6 weeks, we were EXPECTING his chair to be here any day, he's been using this loaner chair thats ruining his back, not his size, totally uncomfortable, giving him pressure sores-this is all just really unnacceptable-so now we have to wait ANOTHER 6 weeks - is that what your telling me at this point?"..she said "well i can call the order into the manufacturer and put a rush on it and ask how long it i will take"..anyway she said "well i dont know what else you want...you can talk to my manager" i said "i would"..then she said she'd call me back which OF COURSE NEVER HAPPENED...SO LAME!! i cant BELEIVE how MUCH i have had to STAY ON TOP of EVERYTHING or nothing would get done...its totally amazing..you should see my files near the meds, i have 15 of them, social security, state disability, medical, insurance, receipts, meds, wheelchair company, on and on and on..im constantly going thru them to make sure im on top of it all..and by the time i can start making phone calls on anything its 12 when im done with jons bowel program..then OF COURSE everyone is out to lunch!! so then i wait till 1pm and ive got 4 girls under my feet, then by the time i remember its 5pm again..around and around i go...

alright- well had my rant for the day i guess- WHEW!!

tonite at dinner, sarah asked me while i was feeding jon, "mom is daddy going to die" i said "no-not yet"..then she asked "will he walk again before he dies?" i said "i dont know honey- we never know when we will die - BUT if daddy does die- do you know where he'll be?" she said "in the grave yard??" i said "well ya, but where else?" she said "in heaven and in our heart?" i said "yes and he'll be waiting for us when we die and go to heaven"
i couldnt believe she asked me that question???? is she worried about that??? when i think that the average life span of a quadrapalegic is 10 years..these kinds of conversations scare me...i think about it - but i dont think about it...if that makes sense...its not something i want to dwell on..i can do what i can to be prepared..which is why we have a trust and will..but i cant dwell on it..im enjoying and relishing every day that jon is doing good...im learning SO MUCH about opposition these days..im so thankful he has good days..because i cant imagine having a hard day again and again and again..

well please pray that this "flushing system" works for his UTI..we dont really want to do the IV thing...please pray that his muscle spasms will decrease and the baclofen will come into effect..please pray that his bowels will function properly...please pray that his concentration and focus will increase..it takes him SOOO much time to sit and have someone type something out..pray that his spirit will remain strong...and that the "old jon" will return...its very hard for me to watch my YOUNG 33 year old husband suddenly turn into an 80 year old man..he's taking 30+ pills a day, he's in a wheelchair slouched over, he's quiet, he doesnt eat a lot, he sleeps a ton...anyway - this has been incredibly difficult to go thru..and im SOOO thankful to have everyone praying for us...please pray for these things..i know that the power of prayer works..its amazing that jon is where he is after ONLY 3 months if we really think about it!!! thats awesome isnt it!??

Tuesday afternoon...

Well, back from the doctors..jon has a bad UTI..he will have to flushed out during a cath procedure..if this doesnt work then he'll have to use an IV to treat it..there's an 80% chance that it will work..we go back in 2 weeks to see how it went..so pray it works!!

i dont have a nurse here till 8pm tonite..so im doing a lot..thankfully katie and seth are here helpign me and jon out with a ton of things...

well back to our crazy life!!

oh and carol didnt come...so i'll have to track her number down again..BUMMER!

tuesday afternoon

well its now already 130pm..carol is on her way HOPEFULLY..we need to leave here soon to head for his urologist appt which i think is on Day Street...i better check on that!!
jon says the baclofen seems to be working and he's adding one half every other time..so its not too much on his system...
i FINALLY got us registered for the cruise- WHAT an ordeal!!!! so thats scratched off my list, so now its the adventure of packing 4 pages worth of stuff..UGH...
well sorry this is so short..but im CRAZY mad busy!!

monday evening..

well the rest of the day was pretty productive..i called on the wheelchair to find out it POSSIBLY hasnt even been STARTED YET!!! SO BUGGED!!! anyway, after 5 phone calls its on someones desk...who's on "vacation"..so ill have to stay on top of that one like EVERYTHING else...

i got the plans for the elevator lift..we have all the neighbors that needed to sign it except for 2...which 2 out of 7 isnt bad! so i just have those 2 left to sign, then send it over to the HOA committee to get it approved THEN we can send that to the city and THEN we can get it started ..

Jon was pretty quiet today..he's having STRONG muscle spasms today..ones that go into his stomach and chest making it hard to breath..we're going to up the baclofen to 15mg instead of 10...20 is the hightest he can go..and see if that helps to calm those down...hopefully its because things are coming back for him...

i talked to the cruise company and relieved a lot of our nervousness about going..so that was very helpful for us!! if jon doesnt go...then Kims family will stay at our house and Kim will be his nurse 24 hrs the time were gone...the ward will continue to bring meals next week while she'll be working so hard for him..hopefully he's able to go..but i worked super hard today to get next week figured out and organized incase he didnt come..ill probably just be mopey the whole time im gone..but my girls deserve a happy mom and some time spent with them..at this point, i guess i feel like people are going to judge me either way and i shouldnt care or worry about how they feel if i go or dont go..but its a constant battle for me to feel like i can do anything anymore...its not fun..but something im working on..

sometimes i go to bed and think...man i wish some days i didnt have to wake up! cuz its gonna be hard!! but i go to bed and manage to get up anyway..i think sleep helps you!! and the hope that it will be better then the day before..even though its CRAZY work all day..

tonite we did our family home evening...i talked about talents and then i picked dad to talk about each girl and what talent he thought they had..it was fun...anna's of course was her "imagination" and how she imagines she's a princess all day everyday - SO FUNNY!! we talked about why we have talents, and that Heavenly Father blessed everyone with atleast ONE talent to help his people on earth and help to build His kingdom. Anyway - it went great and then we gave the kids 2 tiny scoops of ice cream for their "treat"..

I managed to help jon into bed all by myself - which yep i can do! im superwoman but i told jon i think im getting MANLY ARMS!!!!???? yikes!! then i helped him to email a few business people, then i hurried and got kids into bed for the nite and quickly changed so i could go running and relieve some crazy amounts of stress..i ran my 2 miles again..i walke 1.4 and then i run 2...it was great..i didnt think i'd make it ..but i guess i had a lot on my mind and the iPod blaring!!

well i need to hit the sack...hope the doctors appt goes well tomorrow regarding his major UTI..pray that it does and that the UTI gets healed!!

getting stuff done..

well so far its been productive for us..jon had a great bowel program- the things were thankful for!!!! he's been in and out of passing out..so ive been right next to him..he took some constipation liquid and it may have drained him..we'll have to not use so much next time..he's doing better now..just been in his chair sleeping and not doing much..but his pain level is GREAT!!im so happy about that!!!

i have the otehr caretaker carol coming tomorrow around 1pm to meet with me and jon and talk things over..PLEASE keep this in your prayers that i goes well and she's interested and its a good match!!

ive been on the phone ALL day..i talked to the cruise lines about everything regarding jon and got alot answered and figured out about him, there were too many "unknowns" so its nice to get a better idea of what were working with, i need to now call delta airlines and then talk to the van rental company to make sure we can get jon in and out of the rental van etc..

ive made doctors appts, called the insurance, talked to the case manager, called more doctors, straightened out billing, found jons missing chart, left messages etc etc etc..i have to go to all my neighbors and have them sign off so we can put an elevator on to the back of our house so he can start sleeping in our bedroom together once again and take real showers..

i talked to kim about how we'd work things on the cruise if jon goes and how well try to work things out if jon stays..she'll call me back after she talks to her family about it..i will need to arrange for nurses to be here while were gone..

i FOUND OUR PASSPORTS!!!!!!!!!!!!!!!!!!!!!! HUGE accomplishment!! so now i need to go online and register for the cruise using those - SO HAPPY!!

anyway - back to work..

thanks for your prayers...

you all must have prayed extra hard for me last nite- i want to thank you! i truly feel like thats what happened...i actually went to bed at 1030pm last nite which was SO NICE!! i usually dont go till 12 or 1am..then i slept clear thru 7am till the girls came in my room ( i make them do that so the nurse can sleep and they watch tv quietly)..then i got up at 8am to start my round with jon..its now 10am and i got everything done already - ALL BY MYSELF!!! i cath'd him (which means helped him go pee-using equipment...it takes 15 minutes to do this procedure), then fed him breakfast, gave all his meds, brushed his teeth, put deodarant on him, changed his shirt..fed myself breafkast and unloaded and loaded the dishwasher..mind you the NURSE is the one that im PAYING to do all this for me..i dont even know or care anymore what she's doing..the weekend nurse is SOOOO overbearing im kind of done with her..and the week nurse is really lazy..i REALLY need something different over here!!! anyway- in about 10 more minutes i'll start his bowel program...

Jons family does come up here daily..typically getting here around 1230pm..katie and seth are tuesdays, robert is wednesdays, scott is thursdays, and sandra is fridays..i have no help for saturdays or sundays..which is maybe why im so groucy by sunday afternoon/nite time...they have very busy lives..they all work at roberts law office which is mad busy right now..so were very thankful they take a day off and come help me..when they are here i feel HORRIBLY guilty leaving them with jon AND ALL four girls to just "check out" so i tend to just stay home unless i have to go pick up meds at walgreens..its overwhelming for me when im by myself..i cant imagine leaving them with his family when they aren't use to it...the nurse is typically sleeping from 12-4 or 5pm so thats why i have to be home...

well we have no real plans for today...jon has his urologist appt tomorrow for his UTI which apparently is so bad that not even an antibiotic will work..they have to "flush him"..so we'll see what that is all about..right now while im thinking about it im going to call dr. jackson who did the surgery and get him to call us since he forgot 2 weeks ago...after that i'll go thru bills and make sure everything has been paid before we leave for the cruise...i need to go thru my 4 page list of stuff to bring and make sure its all organized again and start packing...

so thank you for your specific prayers on my behalf and thank you to my friends who have all individually emailed me to "check up on me" last nite- i SOOO appreciate my friends..they are everything to me...people i trust...people i care about..people who help me...people who make me laugh...people who pick me up milk without asking me..people who bring me chocolate...people who quietly come to sweep my floors...people who invite my children to their homes to play or to the park...thanks guys..you rock!

one more i forgot..

more photos..

here are some more..

FINALLY photos!!

okay here are some photos- i couldnt pick which ones they were all so good!!

breakdown...

sadly at about 545pm i had a total breakdown, i had a HUGE full day with little sleep saturday, then at 8am jon wanted to get up and go to church so we did that today too..i went upstairs about 230 or 3pm for a nap..but that didnt happen with little kids...becca kept breaking everything, sarah and anna were being loud and laughing constantly - ya know usual kid stuff! anyway - i just couldnt take it anymore, at 545pm i just got in my car and left..i found myself at the santos' home a mess...russell came down and helped with dinner that had been brought- thanks maxine LOVED IT!!!!!! and then he helped to get girls ready for bed..i came home about 830..that time went by so fast! i must have cried a LOT cuz i thought i was only gone an hour!! i kept yawning or crying the whole time i was talking to tracy..and i felt SOOOOOOOOOOO bad because it was fathers day!!!!!! i felt bad for jon, i felt bad for russell since it was his day..anyway- lame...
im home now, i got the kids into bed, i can tell they totally miss me, jon's wondering just what the heck happened- poor guy!! anyway- i just needed to "check out" as i lovingly call it-- i think 2 days straight of doign jon all by myself and four girls put me way way way over the edge..i think im WAY too worried about people judging me..and thats just only adding to the stress...im think im WAY too worried that people feel like i need to have my life normal again..and whats taking so long..i feel like nobody REALLY i mean REALLLLY gets what its like for me and our family..and i think im just burnt out on making it seem like its all okay and under control...i think for the most part it is..and maybe just right now its really hard..i dont know..anyway - thats my ramble for right now!!

and this is more for my own journal- not so much wanting pity from people!! im doing much better now!!

FINALLY the photos!!

possible caretaker!!

PLEASE pray for us right now, i went online just now and located a possible caretaker. Her name is Carol and she's had 20 years of experience. She is about my size and strong - GREAT! She's worked with quadrapalegics as well. I gave her the run down of the schedule i've put together- she kept saying WOW IM SO IMPRESSED that you've been able to do that in just 6 weeks!!! she couldnt believe that i had a system routine somewhat put together - i told her im trying to get my life back together....she asked what we were wanting to pay..i told her we are able to pay 12-1500 per month with weekends off...she asked if i was going thru an agency right now...i said yes we are.. she said "oh then i know EXACTLY what your working with - yikes!!"...she was just so impressed with my positive organized attitude that she said well christina, if jon is anything like you- i can hardly wait to meet him!! i told him he's SUCH a positive guy - he's not grumpy or cranky, he's upbeat, trying to keep his family together, trying to keep his own business going, but our life --its TERRRRRIBLY hard right now and we DESPERATLY need to find a solution to make things a little easier on us...i told her that she'd LOVE jon and he's been in the newspaper if she wanted to look him up online, he's got a HUGE family and MANY friends that love and only what the best for him..anyway - she said she'd come visit with jon to make sure they make a good match and that she felt capable to do all of the things i talked about..and that she'd come meet him in the next 24 hours..

SOOOO PLEASEEEEE pray that they make a good match, that she will want to do this for our family..we SOOOO badly need someone other then these two caretakers we have..paying 5k a month is going to KILL us..and since we get more then $100 a week from SDI, (state disability insurance) BOTH social security AND medical have now denied us...so right now its out of our pocket and the foundation fund...
i keep going back and forth, do i want a housekeeper/nanny to live here and help wiht the house and the kids and i just do everything for jon, or maybe just have someone do it thru the nite time like a 12 hour shift, OR do i just hire someone to do jons care and i do the house and the girls..of course i'd prefer to do the latter because im a wife and mother = not a caretaker!! but maybe i need to do the other..i dont know...when jon is feeling good and meds are working and i can get a break or two from it..its bearable, but when jon is miserable, on the wrong meds, and im constantly being demanded of things...its horrible...not to mention have 4 girls demanding so much from you too--- then go try walking to church or what not with a happy face and smile and not break into a crying fit!! then IF you do happen to take a break, your fearful of SO MUCH judgement by other people thinking, we'll if she has time to do this or that...she doesnt need our help! its a constant fine line i walk everyday..i just want to be normal and like everybody else, i just want to do my own thing and not rely on other people to help me and then judge me about it later...but the truth is..i still need help..and im soooooo thankful that i get help and people still care...
its so crazy that this has happened to my family, when i think if this would have happened to this family or that family..THATS when i truly realize how hard this really is...
well anyway -enough of my rambling..i guess i just wanted to say..that even if it LOOKS Like we have it "all together" we really dont, its 10 times harder once the front door is closed to the outside world..so i guess in a sense im asking..please dont judge me...and please dont assume that everything is rosy at home..because its really not..ask anyone who has been in our home longer then 5 minutes..its STILL very hard...im CONSTANTLY running around the house...it reminds me of a thing rachel was typing on the computer..it said "my name is rachel, i have 3 sisters, an injured dad and a VERY BUSY MOM!!" and that is why i want my family back again so bad..my life was so much easier before this...and yet even though im going thru this...im finding lessons to be learned..as i said before..one of them is judging..we dont always know the "whole story"...

okay now im really done rambling!! so just pray that this new possibilty works out!! and i PROMISE jon and i will be VERY THOROUGHLY with her and make sure she doesnt have any warrants for her arrest and all that good stuff..i know people are always asking us to "make sure" they are okay...i promise you were smart people, and we ALWAYS think of these kinds of things ahead of time and we have 3 lawyers and probably 2 more on the way in the family - so were good!! no messing with the hales!!!

made it to church...

we'll we made it to church..and now i just want to sleep for 4 days and not wake up!!
i didnt think we were going - 9am church is hard to get to...but it was fathers day and jon wanted to go "to atleast take the sacrament" but we were late and missed it anyway..oh well..once there we figured we put so much effort into GETTING there..we mineaswell stay..so we did..
we got home and i made everyone sandwiches for lunch, fed jon, then jon felt like he needed to go to the bathroom, so i ended up doing the bowel program with him ALL WHILE the nurse has been SLEEPING!!! SO BUGS!! she's been asleep since we left for church at 9am...must be nice!
its now 230 and im JUST getting my chance to put my feet up since YESTERDAY..im really tired and need just 15 minutes to catch myself back up..
i thought i could post pics from this laptop..but it looks like i'll have to go downstairs to post them off the main computer system..
i talked to jon about the cruise..i feel like he's doing so much better..considering that he's COMPLETELY OFF that methadone and he's ONLY taking his dilaudid every 6 hours instead of 4 hours is so awesome!! and he HASNT had to take ducolax for 2 weeks now!!!! do you know what that means for us!! just that right there is SOOOOO wonderful!!!! i really feel like the neurontin and not being plugged up is the key to him not having the pain so much...i'd LOVE for him to be completely off the dilaudid..i think thats something worth shooting for..so i'll talk to him again each day and see what we'll plan for the cruise..i cant BELIEVE were leaving saturday - i REALLY dont feel prepared for that at all! first i need to figure out where our passports are..if i cant find those i'll need to make sure i have my birth certificates ready to go..which we can do..then i'll need to pull out my 4 page list of stuff to bring and pack and have at it..
thank you all for your prayers and helping us get thru this..and for right now just helping us day by day and for helping us get thru each week so that our normal will be normal one day..

we made it...

well we made it!!! this am he woke up and had NO breating or chest tightening problems!! SO NICE!! and he was SOOO much more relaxed and calm and not cranky or fidgity about everything-- so wonderful!!
i didnt get to bed till 1am last nite, then i got up at 7am to get things going, we got jon up and going by 8am..then we got out the door by a little before 11am..then i dropped the girls off at my friend shellie nielsons house- THANK YOU SHELLIE!!! then we raced down to the temple where ALL of his family was waiting for our arrival anxious to help..we got him out and inside the temple...we saw dave parker working at the front desk of the temple as you come in to show your recommend..it was great to see him and thank him for letting us utilize his foundation to help our family..we then watched as Mark was sealed to Jennifer today..thats the wonderful thing..in the LDS religion, we believe that marriage is not only till "death do you part" but we believe it is forver, we are sealed on earth AND in Heaven - what an awesome thing!!! what a priviledge and honor it is for me to be sealed to jon, and to know that after this life, if we continue to live righteously ..we will be together forever and in the Celestial Kingdom and that his body will be whole and he'll have no pain...
we then went outside and did all the pictures, sadly all the kids were done having their "photos" taken and so i put them all in the truck -had them change out of their pretty WHITE dresses and into their regular clothes and gave them all snacks i had brought with me for them..then they kept jon around to take more pictures which lasted another hour...he said he was tired of "always being in the front" for all the photos..that would be annoying!! poor guy..i felt so bad...
then we got him back into the car and stopped off at wendy's drive thru and headed to my parents house..we got jon on a couch and i got him comfy to fall asleep for an hour..my girls went swimming with uncle brian, jessica and melissa..becca went down for her nap at the same time..it was SO NICE!! then we all got ourselves put back in wedding attire and headed off to the hales for the open house..
the open house went great- jon visited with TONS of people and enjoyed himself..he said he didnt really have pain today all things considered! which is GREAT that he didnt have much and had NO methadone!!! i really feel that the nuerontin is what helps him with his pain..
we then finished with the open house and left at 930pm..got home a little after 10pm and got everyone into bed...the caretaker on the weekends is a big talker, so jon asked that i tell her that he just wants to go to bed, and to not talk to him, and just do what needs to be done so he can get some sleep..jon is WAY TOO NICE and would have just talked to her..so im glad he asked me to do that..i think he's done with everything and is sleeping..
well thank you for all your prayers for us this day - we did it!!
i had downloaded the pictures of the day..but i will have to post them in the morning..

friday nite...

tonite we got everyone bathed and showered and i spent 2 hours getting the truck packed and getting everything we'd need for tomorrow..jon was able to get a bed bath and rest...he asked me to call someone for a blessing..it was 10pm and he felt HORRIBLE and said it was too late..i told him not to worry- it'll be okay..so i called his brother chad who lives in danville, ca...his family is staying with kelly's family in riverside- so he should be here shortly..jon will be so surprised to see that chad is the one giving him the blessing..
he is really nervous about being so agitated...as i was getting stuff together for him - his suit for the wedding..i was holding his hand and he asked "will i be okay?" i lost it..i told him i'd take care of him..then i walked out and cried...that is SOOO hard for me..its one thing when its one of your children and they ask you that..but when its your grown husband who protects you..thats a completely different story...
well chad is now here..and jon is so excited to see his older brother..there's nothing like your older brother...
lisa came by and brought the dresses- i LOVEEEEEEEEEEEEEEEEEE them!!! im SOOO excited!!!!!!!!! thank you sooooo much!!!!!!!!!!! i cant believe someone would do that for me-- im soooo grateful!!!
well today has been emotional for me...as i drove home from my errands i though..what would we be doing if jon was not in his current condition..we'd be down in OC at the hales home helping to decorate..i usually am SO good about helping out with things like that..but i couldnt..thats hard for me..jon would have loved to help dad move big furniture and work out on the backyard with him...were both the kind of people that just get in there and start working..and typically jons in his nice kahkis which use to drive me crazy!! everything is so different now..it makes me sad sometimes..when people say "you'll walk again" its like i cant even imagine what he'll look like walking again..last nite i heard something near the stairs..it reminded me of jons ankle that would crack when he'd walk..its little things like that -that will set you off...then again tonite..connie hemmed jons nice new suit pants..and i put his suit together, and i thought..jon was going to look SO good in his suit when jons dad got it for him...its just wierd that now its not quite what we imagined...then that set me off again...then later i was looking for garments for him - it will be the first time in 3 months he's had them on..my mom had boughten him nice new perfect white ones..so i got those ready and i found a deodorant that he usually wears...i opened it up and smelt it...it was totally jon...then it really hit me hard...so i took it RIGHT into his room and said "your going to start wearing this again- no more of this right guard stuff- i cant stand that stuff anyway!"

well sorry this post is so sad...its after midnite now..i have such a full day and were all pretty nervous about how its all going to play..the biggest thing is time..it takes SOOO much time to do just about anything..so if were late getting the sealing- just keep waiting!!

we ask that you pray for jon, that he will be less agitated tomorrow, that coming off the methadone was the right choice, he only took 1/2 the pill today..and im not sure if he'll do 1/2 again or just forgo it all together...when his chest tightens and he's agitated, he feels like he cant breathe...and THEN not being able to move..its so closterphobic for him...i cant even imagine what thats like...so please pray that all goes well for him tomorrow..that he doesnt pass out while driving..that he stays comfortable thru the day...that my girls behave and do well..and we return home safely to our happy home...thank you for all the prayers and service everyone provides on our behalf...what an awesome feeling it is for us to know that as a team were all helping and going to see jon walk again..

friday...

jon did well thru the nite..he woke up terribly anxious and has been so ALL day today..he had a good bowel program and im SOOO happy he's yet to have to take the ducolax!!!
this anxious thing can be so terrible..he's figity about EVERYTHING!! he gets to where his chest gets tight and he feels like he cant breathe...he spent 2 hours working with sheldon and then 2 hours with the byers..i had TONS of errands to run and since i cant ever get out - i saved 3 hours worth all today..im so grateful for those that helped our family! my girls hung out at amy nottinghams all day - they had a lot of fun!!
well - now i get to get everyone bathed/showered and then get EvERYTHING ready for the wedding tomorrow..i need to make a list cuz im getting overwhelmed here!! jon is worried about him being anxious..he's going to come off the methadone and see if he's not so agitated about everything..i sure hope its the methadone- because THIS is NO FUN...its extremely hard on everyone else when he's like this..so pray that its the methadone causing this- and that it subsides..we really need for tomorrow to be a nice day..
well back to work!

back from the doctors...

the nurse came out today to access jons pressure sore..thankfully its only at a stage one..so we'll just keep watching it..he also did his OT and PT today..i ran down to the medical office and handed everything over..they now need our trust information and our business account information and how much we owe on our truck..so back again i'll go!! but glad i got the most of it done before we left!!

i then raced home in time to turn around and get jon into the car off for his 3pm appt..we met with the doc, we did an xray on his ankle..not broken..maybe sprained a little..but nothing major, we did another urine sample..it didnt show up as a UTI but the urologist from a couple weeks ago who took the test said the UTI was so bad that the oral antibotics would work! HELLO! so that means he'll have to have a "flush" and no you dont want to know what that is!! so we'll hopefully get an appt next week and get that done..we also had xray's of his shoulder and we have a orthopedic appt like in august! so she said to call back and try to get an earlier appt..so we will! jons right shoulder feels weaker then the left and isnt sure if there is injury to his rotater cuff..its been a problem since the day of hte accident..but nobody took xrays of it..

we just finished dinner..and the nurse told jon to get out of his wheelchair every 2 hours! like he has time for that he said!! so he's now on the couch taking a break from his chair...his brother scott is still working hard with him on the business..

we are still waiting to see how jon is doing regarding the cruise..he may just end up here at home with kim and make the rest of us go...so we'll see how that goes..

tomorrow i have SO MUCH to do before this wedding for our family..i may have to run down to OC tonite and run back after everyone is in bed to pick up some wedding stuff and some medical supplies that are at the hales home..i will have to wait till everyone is in bed and taken care of before i go..which will be 8 or 9pm...tomorrow i have someone helping me with the girls so i can get out and get it all taken care of..im so grateful to this person! thank you!!!!!!!

temp drops...

well last nite jons temp dropped..so that is good..i got up and made his appt with the doctor for his UTI and to check on his ankle - so scratch that off my forever to do list!! his appt is at 3pm..scott should be here so he can help and watch the girls while we go and get back real quick...
i think while he is doing his PT and OT which are back to back today...i will run down to the medical place and hand in everything - there ms. campbell who is helping me at the office there will go thru it all to make sure its good..then i can scratch that off my list too..only to add 50 other things! Y:IKES!!
i got a call from social security disability stating that they contacted loma linda and they said loma linda said that they have no record of jon...LOVELY! anyway - so i had to give this person a bunch of information..loma linda will just have to look a little harder i guess - so classic!!
this morning was crazy..the girl was here to pick up my younger 2 girls, i thought anna was dressed, but she wasnt...so i was hurrying to get her dressed, then of course could only find one she of THREE different pairs of sandles!?!?! so she got to wear mismatching shoes - oh well - pick your battles- thats the theme of my life right now!! then sarah was BAWLING because she couldnt go with them, then the phone starting ringing for they day (social security), added with jon asking where his breakfast was, the nurse upstairs still asleep even though its 9am, and me just wanting to hurry and take a shower...AHHHHHH...i had to remind everyone that im only one person with two hands taking care of 5 people..one of them counting as 3!!!
anyway - so crazy morning already - and its only 10am..i got everyone finished up and hurried for my 2 minutes shower- more like a hose down off-but atleast im not dirty i guess...
i taught the older 2 girls how to do the laundry - i think they may have it figured out..i bought them gratitude journals per advice from my good friend amie alvey- thanks amie!! my girls all have "chores" they have to finish before they get a marble for the day..which include, make bed, pick up room, brush teeth, prayer, piano, read for 30 minutes and gratitude journal...then on wednesdays are our cleaning days where they will help me clean the house, and then saturdays are their laundry days where they have to do their own laundry..anyway - we'll see how it works out but im trying SO VERY hard to get us to be a normal family without stressing me out..
thanks for the prayers on behalf of jon-- he's doing much better today! i picked up the rest of his meds today so he's stocked back up again..were right in the middle of his bowel program then we'll get him up for the day to start his therapies..

quiet nite..

well tonite its a quiet nite..jon got a lot done and rested in his bed..the nurse gave him a bed bath which was REALLY needed- we hope to get him upstairs with help from jake thompson and peter esquivel tomorrow nite for a shower..that will make him feel SO GREAT!!!
right now were watching him closely..we seem to think he has a UTI, he has a fever of 101.0...so were going to call the doctor tomorrow morning after i cath him at 8am to get him in for the UTI and get a prescription for antibiotics...we may not even need to go in for that..but ill call..and then jon's still worried about his ankle..so we may end up going in to have him look at it anyway..which will maybe lead to an xray on it...

i wanted to add that there are some concerns that people are worried or nervous or concerned about jon going on the cruise..please know that we are not choosing the cruise over jons health, please know that his health comes first, please know that if the nite before we leave and he's just not comfortable about going..it wont happen..but for now..were focusing on him being able to go...please try not to add to the stress and ask him "are you nervous about going!!??!" because yes he is..and he will tell you he is...who wouldnt be..but his desire is to go..and he's told me that if he's not capable..then he's just not going...i just felt like this needed to be addressed..i didnt want things whirling around the nation about this and not knowing the whole situation or how we really felt about the whole thing...
i also dont want people to think we have tons of money or are using any fund money and are out cruising and taking vacations...this money was saved up and already spent way before jons accident..there is also no refund to get any of it back...this is something the whole family has planned for - for about 3 years now..again - i just didnt want to give the wrong impression to everyone out there..
i dont want people to think im trying to defend myself..but sometimes people make judgements before they know the whole situation..that is SUCH a huge lesson i have learned from this trial and just wanted to take a moment and share this before judgements were passed our way..i hope this all made sense and that you understand what i was trying to say..

my pantry..

here my panty sits- amazing all that stuff actually fits in there!

you feel my pain!!

Well the ant guy came...the family from my ward moved ALL my pantry out and here it now sit and will so for the next 7-10 days...because the ants will come back AGAIN and then they will die...so i figured why put everything back just to pull it out again..oh well..such is life!!!
jons doing well...he is up in his electric chair working like CRAZY with his dad trying to finish up this magazine..Todd- need that flow sheet if you have it..
kristi stopped by on her way down from utah - she was amazed at his progress!!! its like a newborn and every couple months you see it- its TOTALLY changed- jons the same way...
the tile in the upstairs bathroom is NOW DONE!! YA!!!!

some of you are asking how on earth we plan to get jon on a cruise..we'll were just gonna do it- no need to sit at home and think about all this---thats why we've been working so hard on finding the right medications for him...were SUPER close now..so we feel he'll be okay..we have a RN coming with us- there will be doctor on board..so were not too nervous...the trip was planned and paid for before he got hurt..so were just gonna go for it..he may just end up in his cabin most of the time..but thats okay..it will be good for him to be with his family..that may surprise some of you-- but pray it works out...yes he requires full time care, but we have a full time nurse coming and 31 family members- i think he'll be okay...his pain levels have been at a constant 5 or 6...so we'll just work with what we have..its not a 0 but its WAY better then a 9 or 10 at this point..and nope- no cruise restrictions, weve been in contact with them, we already switched our cabin to a wheelchair cabin with the nurse in the very next room, you dont need a doctor's clearance to go on a cruise- its up to the patient- if he's up for it- go for it- which is what the doctor told us- it would be good for jons mentalness for him to realize life goes on and he's not stuck at home while everyone else is having fun and going on with life -

well becca got woken up from her nap today- and anna went to bed late due to rachel and got up early due to rachel - so we just finished dinner and now im going to go try to put them in the tub and into bed for the nite..then i'll work on the older two girls..then i have to go to walgreens AGAIN for more medication drop offs and pick ups...i feel like walgreens is my second home!

thank you to those that bring dinner!!! Whitney - thanks!! im sorry that im never able to really thank those that come bring us food each nite..its SUCH a crazy time right then - kids in and out of the house- jon needing to be cath'd- trying to set the table..anyway -im sorry if i cant say thank you enough - but were SOOOO very grateful!!! i promise to make it up to you- everyone that has helped!!!!

working hard...

this am i got up and picked up the house before the r/s sisters came to clean it..we all worked SO HARD!! im SOOOOO grateful for them to help me at this time! its so hard because i had SUCH a good system set up! i would clean the entire upstairs on tuesdays and the entire downstairs on thursdays...this summer i was excited to start getting my 2 older girls involved..anyway- everything's totally changed and not "what i had planned"...anyway - so im just SOOO thankful that they come help me clean - they are suppose to come every wed..but im having them only come every other wed so that i can start doing it the other wed's they arent here...
jons having some pain this am...he's telling me he doesnt think he'll get into his chair today- MAN! i need to look at his pressure sores and see if they are causing the issue or what...we did 1/2 methadone and then the dilaudid down to every 6 hours..so im not sure if its the med's being timed differently or his pressure sores causing problems...so frustrating! we were doing SOO WELL!!
well jons dad should be here shortly - with our usual carls' jr lunch..looking forward for that! i forgot to eat breakfast AGAIN - gotta love western bacon burgers YUM!!
i need to get my girls over to lisa's to try on the dresses she made- SORRY LISA about yesterday - i'll call you and come today!!!!!

i tried to get the passports out of my safe..only to get the batteries in..the code works and now the key wont turn - MAN! whats my deal!! so i'll have to ask jon if we can bust it open or im missing a step or something!??!?!

well back to work - washing bedding, doing projects around the house - the family is here cleaning out my pantry so the ants can get sprayed- they are now in our bathroom vanity areas-- hopefully we can just get rid of them!!

thank you for your prayers and thank you SO much for your service you render to our family!!! im so thankful that people are here willing to work and help me get back to life again !!! i want to SOOO bad not have any help - and do it all on my own..but in the same breath i know that i could go crazy and end way worse then i am already --i need to be here for my family and for that im SOOO grateful people recognize my need for help and for helping me work my way back to our normal life..we'll maybe not normal - a new normal though!! thank you thank you thank you!!

the day has come to an end...

well our day has finally come to an end...its 845pm now...i got jon to his doctors appt...we were about 30 minutes late due to traffic..but i called and told them were STILL coming - please dont charge us a no show fee!! YIKES!! we decided that jon was doing great with just ONE methadone a day vs going up to 2 methadones...so thats our plan..he will take a 1/2 pill in the morning and a 1/2 pill at nite...we will also be doing his dilaudid every 6 hrs instead of every 4 hours to see if we can get him completely off dilaudid- this makes us VERY happy...although we just traded one heavy addictive narcotic for another...hmmm..well anyway - its a few less pills a day i guess!!!
we came home and ate our dinner..the caretaker had left at 4pm and the other one didnt arrive till 8pm..so i fed jon and then got him into his bed with my dad's help..my dad put our shower and toilet back in!! YA!!!! my bathroom again!!! the tile still needs to be grouted on the flooring - but hey were close now!! i believe marc pendleton is going to head up getting the rest of the house put back together, gettting the carpet layed, getting the wood flooring into the kitchen, staining the french doors, putting up the baseboards and 3/4 rounds, and painting the walls back to their color...we'll be gone for 9 days on june 24th till july 2nd..so he's hopefull all that work will get done that week while were gone anyway..
at 8pm after i got jon into bed i went up and bathed/showered the 4 girls..then we had family prayer, and then they did their 30 minutes of reading time before bed..

well i feel like i got a lot done today! i ordered lavender ties for all the guys for mark/jennifers wedding - sandra they should get to your house by friday! i called medical and they DIDNT need my social security cards, they have proof already that they are legite, im getting a copy of our life insurance info tomorrow in the mail so on thursday i can go into medical and hand in all the paperwork they needed to get that started..WHEW, i contacted the wheelchair company-but just an answering machine, i contacted a few things about some medical bills and got that ironed out, i got a few more paperwork things done dealing with jons care, so all in all..a successful day..

time to go make sure girls are in bed for the nite-- thanks so much for everyones prayers!! please continue to pray for more movement for jon, pray that this new concoction of meds will work for him so he can function, pray that this acidophilos will work for jons bowels and they will function properly, pray that we all get enough rest to function thru the busy day, pray that we find a routine so that i can be back with the family more and we function like we use to, oh and dont forget about the ants! pray they go away!!!

change of plans...

well i called the ant place...and he was double booked so now i dont have to worry about that till tomorrow - YA! i had one family show up to clean my pantry for me!!! HOW NICE IS THAT!!! so they'll come back tomorrow...THANKS GUYS!!! i vaccummed the ants out of pantry only for my vaccumm to start burning and blowing out black smoke! i swear - my day is so lame!!! i said i think im just going to go back to bed and start over!!!!

my parents called and they are on their way up - YA!!

we've FINALLY got jon up in his chair..it took till 1pm to do so...he didnt want to go in the electric one because he wants to "work" and not get lazy in the power chair..which really means more work for me again...we need to work out a balance here...
i need to call on HIS own wheelchair to see what the deal is? where is it? did they finish it? did they even start on it??

i called the nurse..but as usual she's not there and "they'd call her" so that means 'call us back to make sure we did that!"..i tell ya im learning!!!

i still need to go grab some batteries over at walgreens real quick..

its now already 130pm and we still need to eat lunch!! good thing there's left overs from last nite- ill warm that up..

i tried calling medical--but of course only answering machine..i called on a few of jons bills..we got charged 3 bills from 3 DIFFERENT doctors for jon at loma linda..i noticed the dates and they are for 3/17-3/19 HELLO! thats when jon was over at riverside regional!! he wasnt even AT loma linda then!!??? wierd! not to mention he didnt get hurt TILL the 17th??? so i called them -but got a machine "they're out to lunch"..

SO i think ive scratched 2 things off my list and added 15 more..such is life!! now where is that chocolate i had stashed around here?!?!?

overwhelmed and really tired..

well for some reason im REALLY tired already and overwhelmed...to start im working on finding someone that can come help me for the day..katie has a sore throat and were too nervous about getting jon sick..im working on maybe trying to find a sitter for the girls because we have a doctors appt at 430pm..i need to cancel my 2pm appt with the lds social service because we now have this 430pm appt..
im trying to work on medical application, but noticed i dont have a social security card for jon or rachel or myself, so i need to find out it IF they REALLY need it or what..then if they do i'll have to call somewhere else and get some sent to me..
i have ants EVERYWHERE in my house and its driving me crazy, so i have someone coming to spray for them, which means i have to clean out my entire pantry which is the size of a good walk in closet sometime today before 430pm..
jons on his methadone the 2 a day program now -so he's body is REALLY relaxed and hes REALLY anxious about that..so that just add's to my stress level as is..
im trying to register for this cruise were going on (jons family had arranged for all 31 of us to go on this cruise before jons accident -it was all planned and paid for then 4 weeks later jon had his accident)..but im HOPING my passports are in our safe which NOW the batteries dont work so now i cant even open it!! RHGHHGH so i now i have to go buy some batteries..
i have to call the doctors to figure out if they've called the insurance to pay for this one medication we're waiting on..
jons got 2 pressure sores possibly that im keeping my eye on..so now i have to call the nurse to get her over here to check it out..
jons still worried about his ankle, so now he wants me to call a doctor to have it looked at..because he thinks he's feeling some pain around his ankle..

anyway i feel like today im trying to get so much done but im 3 steps backwards on everything!!! i went to get my purse only to find a snickers bar wrapper in it and its PLUM full of ants as well...

so lots of complaining from me today--sorry about all this!!! its all small stuff-but there's SO much of it i think!! plus for some reason im just so tired..i dont know if its because i ran 2 miles on friday and 2 miles last nite or what..im fearful of how the rest of the day is going to turn out..hopefully better! if im cranky with anyone - you'll now know why...

oops...

well jon thinks he messed up his ankle...he tried to turn in his chair and his foot MOVED the BIG couch- OUCH!!! we've had ice on it..we think its swollen a little.. he thinks its totally broken..so far no bruising..so we'll see what happens thru the nite...
all in all it was a good day --marc was here with jon helping him with computer intefacing equipment from about 1-430pm..then we had dinner and fhe..it got pretty crazy here- i had to keep my cool and make the 3 older girls go upstairs for 5 minutes or i was going to lose it with everyone!!! but we regrouped and it turned out fine..i know heavenly father is helping!!!
tomorrow we have no appt's other then a doctor's appt at 430pm..the pain guy..to see how this methadone is working..
i talked to the rushtons and she told me her schedule- WAYYYYY easier then mine!!! she does everything..but after talking i realized she does a couple things in the morning and then a couple things at nite..and then she's done..he uses a condom cath so she never has to get up in the middle of the nite- imagine that!!! jon cant use a condom cath because his bladder doesnt empty all the way..a condom cath is used for people who's bladder responds by a reflex..since jons is half working half not(meaning it doesnt empty out completley UNLESS he's cath'd - if he's not completely empty he'll have the autonomic dysreflexia issue)..we have to do it how we've been doing it - DARN!!! then she said she does the bowel program every other nite..not daily like we do...i dont know if jons comfortable with allowing that to happen since his bowels are his BIGGEST pain issue sometimes..she only has to do one transfer from the bed to the chair..and she's able to use a hoyer lift..then she transfers him again from the chair back to bed..he sleeps on his side the entire nite and never rotates...jon rotates every 4 hours thru the nite along with getting cath'd and along with taking meds..rushton doesnt have as many meds because he has no pain..jons on 4 different meds JUST for pain and 4 different meds JUST for his bowels..
so sadly i was excited..then once i heard how different our injuries are and what were dealing with..i got so bummed out...so back to the drawing board to figure out what will work for our family...

well i cant believe its ONLY 9pm..feels like midnite to me!

check out jons new ride!

hey check this out- so far so good!!

jons doing good..

jon is dressed in his kkakis and a button up shirt- looks like the old jon again! he's doing well..he's really tolerating the methadone well now..they only start him on the SMALLEST amount then we work our way up..he's only had one pill eachday-then today we'll bump him up to 2 pills..we go to pain management tomorrow..then we'll do 2 pills for 3 days then 3 pills for 3 days and see if the methadone helps him..it just takes some time to adjust to any new medication...we did the same thing with the effexor we took the smallest amount and then we noticed it was causing problems so we stopped it..
YA the equipment JUST got here!! im excited to see what it all is and if it will work for jon!!!!

autonomic dysreflexia...

today jon woke up in a good amount of pain...i cath'd him at 8am and got 300cc..then he "worked out" he showed me his legs..we THINK he may be moving his knees!!! we're keeping a VERY close eye on it- were not sure if its his hips moving or his upper body or what BUT there IS slight movement!!!

around 10am he was having signs of autonomic dysreflexia again --i thought OH NO not again!??!! his pressure was 147/100..his typical is 91/58...so i immediatley cath'd him gain and got another 300 out..then i checked his bowels..i worked with him and in tandem he did SOOO GOOD!! we got a good amount and the blood pressure dropped..im SOOO grateful that i am able to relieve that kind of pain and bring his blood pressure down..there is something so totally wonderful about doing these things for him...the other caregivers dont really work with jon the way i can and he's SOOO grateful when im there to really work with him!!!

he's now getting dressed for the day and will begin his VERY busy day today..he has a meeting at 12noon, then a friend is stopping by, then his PT and OT today..i have a company -THANKS RYAN MCCOOK -who is going to help spray for ants-- my pantry is a nitemare..i've got a big project to get that all cleared out..its out of control...like i REALLY needed ants on top of all this!! rhghghh

the equipment is coming this afternoon for jon to try out - it includes a commode chair, a hoyer lift, a trailer lift, a titaniam wheelchair, an electric wheelchair (that weighs 330lbs!) and some supplies!! its from a family in eagle mountain utah..were so grateful! wer'e going to test it all out and work out something with her to purchase it all..

i just wanted to take time to REALLY thank those that are helping - im sooooo grateful...i want SOOOO bad to have my family back and to do it all...but i know that it would ruin me to take this all on my own..and im so excited to take these baby steps to get my family functioning again and start living our lives as normal people again...im SOOOOO grateful people are understanding of our needs, and understanding of our time line..and willing to do what it takes and be here for the long haul..were so blessed!! this truly is SOOO hard

i hope dede doesnt mind that i stole her comments from her blog and posted them here..
"I know everyone reads christina's blog... and i thought i understood a little bit of what was going on for her.. not really understood.. but pictured it i guess.... I WAS SO WRONG.. wow... the hales family is amazing.... that is all i could say.. i was speechless.. i don't even know them that well (although i feel i do...cuz of amie and from knowing all jon's brothers)... I can't believe the trial that they are facing.. and and i was amazed by their strength and their faith... christina just is organized, patient, solid, happy, calm, loving, and so so STRONG.. and jon is so faithful, sweet, caring, patient, strong, and determined... i was literally blown away.. i held the tears in until i got in the car.. i drove home in silence.. no music, no phone, and just thought and prayed... WOW... is all i can say.... they are truly an amazing family.. i really don't know what to say about it all ... all i can say is.. i know Heavenly Father loves them.. and I know is watching over them, i know he will bless them beyond believe.. and he will carry them through this... i know that they are very special, and that he will only give us what we can handle... it reminds me of that question.. that EVERY person i met on my mission asked me......WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE????? it was one of those questions that was so hard for me to answer.. cuz as they would ask.. i would see so many people suffering... and it is just a hard one for me to answer.. but all i can say is .. we are his children and he loves us... and HE knows best.....I thank the Hales for their strength and examples... and ask everyone to keep praying for them....."

please--keep praying!

jons emotional..

tonite jon was extremely emotional...he cried a lot..he's sad because he cant sing..he noticed it in sacrament meeting, again when singing with anna this afternoon, and then again trying to sing her happy birthday with the family...his comments were "i felt like singing was one of the talents i was given..and be it i wasnt great at it - i thought i was atleast really good at it"..then he just started crying..he said "i cant even sing happy birthday to my kids"..
he's also very worried about his business, our house, finances, all the things men worry about daily..only now its 10 times fold for him...he cried more..
its times like these that im not quite sure what to say other then just hold his hand and let him cry...because people dont want to be told "well it could be so much worse" or "one day at a time" or "we'll get thru this"..sometimes people just want to simply cry! so i let him...
its times like these i think ..man it would be so much easier if it was me instead of him...but thats not the way it was meant to be.."lean not to thy own understanding" means so much more to us now...
i look at my kids before i go to sleep and think..these poor children..who in a sense have lost both parents...and i dont know whats worse..losing them physically or losing them like they've lost us..we're here..but we're not here..if that makes sense...maybe just to me it makes sense...i keep trying to make the next day better then the previous day..
jon and i ended our nite with companion prayer..he cried some more and then said.."okay thats out of my system so we can both sleep now!"..sometimes its just good to get it out..im glad he did..

jon awakes!

jon finally awoke after a long nap..this methadone makes everything relaxed adn sometimes his breathing so i have to constantly watch him...
the older 2 girls headed off with the thompsons to go to gavlin hills..they'll have fun looking for lizards and eating dinner with the thompson clan...
i found a couple frozen pizza's in the freezer so we ate that with some salad i found in the fridge too - gotta love the all in one bag salads!! yum!!
its almost 7 now..pizza's should be done soon..then the older 2 girls will be here and we'll start anna's bday..

Sunday Afternoon...

Well its Sunday afternoon-- love those times..its typically quiet and calm..yesterday we made it to the recital and stayed the whole time..then we stayed till the ward bbq which was nice to be around such awesome ward members...then we got home and i got everyone bathed and ready for bed..the santos' came over and we played a good game of pollyanna- which i won! WHOO HOO!! jon was SO wiped out..he was ready for bed..he quickly fell asleep..
this am i got up and the nurse helped to get jon ready and sis. kennedy helped to get the girls ready..we all really worked hard as a team to get us there..the nurse then went to sleep until we got home..
jon is just SO tired right now..he's crashed out in his chair in the "pressure release" position..im going around the house picking it up after a crazy weekend..i feel like i just want to sleep for 3 days now!!
its anna's 4th bday - so were going to do a little family celebration..im hoping i have a cake mix and frosting in my pantry somewhere! which seems to be having issues with ants right now - SO BUGGED!!!

i think today were a little overwhelmed with things..we're just trying to figure out how we're going to make our business work and succeed. Jon literally did everything for it...and trying to tweak it - its a HUGE challenge..were so grateful to his family that are here helping us with that..but still..its something that's constantly on our mind and continues to make us nervous..

Mark gets married next saturday - this whole time we thought it was friday! so its now saturday at 1pm...it was originally at 10am..were SO thankful it got moved to 1pm! makes a HUGE difference for our family!! jon forgets that its not just a 5 minute thing to get him into the car- its tyically more like 15-20!!

its interesting for me to think...i feel like im just drowning in whats goin on in my life that i cant even IMAGINE what it would have been like if jon wasnt in his current condition..i alwasy ponder..where would we be? how would the business be doing? where would we be with that? what kinds of things would i be doing with the kids? would we have gone anywhere with them being out of school? how many OC visits would we have made these past 3 months? sometimes i think about the things jon "would have" been doing and it makes me terribly sad...now...its like living with someone 3 times my age..its just not the same...its a fine line i walk..to have to stay careful not to let Satan destroy what happiness i have left in our family..i will find myself staring at this OUTRAGEOUSLY HUGE balloon our friends the dobberts gave us the day of jons accident...would you believe its still FLOATING!?!??! it is!!! i look at it and i think thats kind of like our family..first off were HUGE..its got TONS of smiley faces on it..and yet its pretty rathered looking, you can physically see some of the airs come out of it..its starting to wrinkle....and YET its STILL FLOATING!! were still trying to hang in there or hang "up" there..even though our life is pretty rathered right now..were still trying to stay afloat!! the balloon says "get well soon" and it helps to remind me..that yes in fact soon, he WILL be well...

well enough rambling from me!! we want to express my sincere thanks to those that have helped our family these past 3 months...this has been quite the trial and challenge for EVERYONE to try to figure out how to best help our family..im thankful for those that email, send cards, pray, fast, call me before they stop off at the store, show up at my house and manage to quietly clean it, or play with the kids, or visit with jon, or watch me cry, hold my hand, make us laugh, those that show a sincere interest in helping us, those that bring jon a green burrito, there are so many things!! were thankful for the families that pray together for our behalf...that is a wonderful thing..and to see jons movements..he can now move his big right toe, his right index finger AND NOW all of his toes on his right foot!! PLEASE PLEASE PLEASE we continue to ask you to pray for more movement...im not sure i've shared this but when jon first felt pressure..it was in his big right toe..and that was the first movement he had- we have to keep going from here!!! i know we can!! PLEASE also pray that we find a more natural solution to his bowel situation..he actually had movement WITHOUT having to take the ducolax..help us to find something that works well with his body...PLEASE pray that all this pain is for a purpose..and that his brain will communicate with the rest of his body..that it will make a connection..we were originally told that he would be paralyzed for life from the neck down, he'd have NO movement, he'd be on a respirator...look how far we've come - truly a miracle and the power of the priesthood, prayer, faith and fasting of others...how incredibly thankful we are..truly we thank you..

anxious...

today jon is very anxious..we think its probably the new medication..i will have to get online and research this out- its methadone..he just started it...
he doesnt seem to be in too much pain..just very anxious, lupy, tired, like his body is going to sleep on him..making it hard to breath type thing...

we have rachel's piano recital at 2pm...were hoping we can get jon there..there is also a ward bby at 430pm..we'll have to wait and see how jons doing..he did say that he doesnt think he'll make the entire recital..

the not knowing is really hard sometimes...makes planning for anything not realistic..life is very simply day by day for us still..

we'll see how the rest of the day goes..

doing better..

jon had a good bowel program..so that helped to bring his pain down from an 8 to about a 5 6 all day ..so thats good..
he's started this methadone which has made him REALLY tired and lupy..it was hard to concentrate on his work with his mom..
he's now in bed and getting ready for the nite- the pain is starting to creep up on him..we tried to give him meds but he kept falling asleep on us..but he finally got them all in..poor guy!

sorry i dont write as much - im just WAYYYYY to busy now!

woke up in pain..

jon had a good nite-- i helped him a LOT with his magazine and website..we were up till midnite trying to get that done..
this morning he woke up in a lot of pain..he's back up to an 8 and he says at this point he's not going to be getting in his chair- the burning pain is too much...im HOPING its because of his bowels and not anything else..we need to pray that something happens regarding that..this is SUCH a constant struggle!!

It looks like the tile upstairs in the bathroom will be finished part way so that jon can take a shower- if there are 2 men that could carry him upstairs please email me and let me know..he will be taking his baths/shower at nite around 8pm..if anyone is available to bring him up and down..please email me..

Thank you for the prayers thus far- im so sad that he's in this pain again..i just pray its due to his bowels and nothing else..

no call from the doctor..

sadly we didnt get a call from dr. jackson - his surgeon like we had hoped..we were terribly busy though today otherwise, we had PT and OT and haircuts for the family from dede raymond - THANKS DEDE!! Scott also came and worked with jon - he's SO close to getting the magazine ready- he's asked that i help him try to finish it --so that will be my plans for tonite...
He had a good day pain wise- he was SO excited to share with Simone Bradford and her daughter that he REALLY was moving! He LOVESSSSS to show the children!!! It's so wonderful to have families praying for him!!!
Sorry I couldnt post anything till now..for some reason the website was down ALL day..

productive day for jon!

jon got a lot more done with his dad..they started about 3pm and worked clear till 830pm!!! jon said he felt SOOO good about that!!!! he's now in bed and resting for the nite..we're switching the schedule around AGAIN...so now the caretaker will get up at midnite and at 4am and then i'll do the 8am one and she'll sleep till 9am..then she'll feed him breakfast and we'll start the bowel program..we're going to be working on getting her to transfer..we'll see how she does..that would make a world of difference if she can!! then she'll do any laundry of jons (usually his clothes and his PILES of bedding) and she'll sleep from 12-4pm..and be back down for his 4pm cath and meds..so we'll see how this works...

jon is doing GREAT though!!! i picked up jons prescriptions..80 more bucks for his neurontin - OUCH..but if its working - i'll pay it!! he's got the new methadone to try so we'll start tomorrow and see how it goes..again - more prayers that this methadone might be something that helps him!! also keep praying for more movement!!! oh and MORE prayers for LESS passing out!!!!! in tonites prayer, rachel asked that "dad not pass out so much"..how sad!! but SOO true...

me, kristen and erin went running...usually im BARELY getting to the mile marker..but tonite i went 1.6 WITHOUT stopping!! and kristen went 1.4!!!! SO PROUD!!! we're going to work ourselves up to 2 miles..erin taught me a good breathing technique..and it TOTALLy worked! im SO jazzed!!

well time for me to go hit the sack -- i was also able to get the girls to bed on my own..im back to a regular schedule..ive got them loading and unloading the dishwasher like we use to, and ive got them all bathed and jammies on by 8pm..then they get to play for 15-20 minutes..then story time, prayer, hugs and kisses then in beds by 830pm..just like ol' times..

i pray this new schedule works..and im SOOOOOOOOOOOOOO grateful for family being able to stay out here during the day's to make it possible..it wouldnt work without their help!!!

i just wanted to say im SOOO thankful for your prayers- and to see the fruits of your prayers mixed with jons faith and determination..its just miraculous!!! how awesome is that!!!??? i love it!!!

longgggg day...but worth it!

Last nite went well...i tended to jon till 1230am..around 10pm he was having signs of dysreflexia AGAIN, sweating, clammy, HIGH blood pressure, so i cath'd him 2 hours early and that solved the problem.. then i cath'd him again at midnite and got more out..then i stayed downstairs on the couch incase he woke up with signs of dysreflexia again..he was scared the nurse wouldnt hear him on the baby monitor (we werent sure it was all hooked up right)..then the nurse was suppose to come down at 4am but came down at 440am..RGHGHG so then she went into jons room and i headed upstairs to my bed..then woke at 730am to get us all ready for the day --so once again im EXHAUSTED!! and its only 3pm!!!
jon said he did fine thru the nite..so thats good..we got us all up and out the door..our appt was at 840am..the nurse was taking jon out the front door and not listening or watching jon and he ended up passing out hard core..i was getting the truck ready and looked over to see him COMPLETELY passed out- i was SO mad she wasnt paying attention!!! i said oh no he's gone tilt him back!!! anyway - after i threw the tipper bars off because the nurse wasnt doing anything right...we got his head back and feet up ...it was pretty bad..his eyes were blood shot red, tears were forming and yet he was just not there..he finally came to..i had to be REAL careful because ALL of the girls were right there- i had to make sure i wasnt freaking out - even though i was freaking out inside quietly!! SO SCARY!!!
we then got him in the truck and away we left AT 840am..we got to county hospital..i asked where to go..they said you go see dr. so and so at this place..so we went to the place and they said pull a #..i said but we have an appt..she said so does eveyrone in here..there were 50 people!! so i pulled a #..i was 32..we were on 20..great - more waiting!! so we waited an hour till our number was called[Certification] and then we got registered..then we had to go see someone else to make sure we had authorization to even be there, then we came back and waited again till they called our name..that process took 1.5 hours! we then got called back..got vitals checked..his temp was good..but his blood pressure was 70/50! YIKES! we then got put in a room and waited AGAIN for the doctor only for someone to come tell us "uh well, your in the wrong clinic and the wrong doctor - were not sure why you are here?" AHHHHHHHHHH...i said i called 4 weeks ago to get this appt..i said we needed to see dr. jackson who did his surgery for a follow up ..she said in 4 weeks she had an 840am appt..so here we are..anyway- everyone at the desk was mad because everyone was blaming eachother..i told them it wasnt ANY of their fault - it was the girl who made the appt 4 weeks ago - blame here already!! so then they called down the spine section..she came down, sorted it all out..she told us jackson's not even in till fridays..i told her our appt was 840! its now 1130! so she had us go take an xray and then another spine doc would compare the 2 and she'd put a call into jackson..so away we went for xrays- waited another 40 minutes and then got those done..it was funny because the tech girl remembered us! she said i did your xrays when you FIRST came after your accident..then i saw you in the newspaper! and now im doing it again! how cool is that!! it was funny...then we went upstairs and the one spine doc saw us and was AMAZED at what jon could do! he was SO excited! he said you shouldnt be doing ANY of this!!! then him and the girl said they'd set up an appt with jackson so he could refer us to outpatient rehab..while waiting we were infront of the nurses station where jon stayed for 4 days- they said "hey you - the guy that was in the newspaper- jon hales!?!?!" we said - hey you remember us?!?! they said OF COURSE!!!!!!!!! so we rolled over there and talked to them ALL - it was SO FUN!! they were all bawling because they were SO excited about his progress and the impression that he left on all of them..then they paged dr. jackson and he called and said he was coming tomorrow to do surgeries ..so he'd go over our entire chart and view everything then just call us at home! WAY NICE! dont have to drive out again!! its SUCH an ordeal!!! when the girl told him everything he was doing - dr. jackson was SOOO excited!! he couldnt wait to view the file!!! this is the dr. that was SOOO negative and said he'd never move again and i'd better start preparing myself for that..it was the FIRST time someone told me 'your husband will never move again" i will NEVER forget that day, what i was wearing, who was there, the words he spoke..never forget..so to hear how excited he was about his progress..that was awesome!! we then told the staff that jon could move his finger and toe..they said oh ya its probably spasm..so we took jons shoe off and pulled down his sock and he FLOORED them all that - NOPE jon MOVES his toe - its not a spasm!!! it was SOO fun!!
we then got home about 130pm - SO LONG!!! but robert was here with our usual carls jr. wed. lunch - and now they are working on his magazine..erin has my girls at chuckie cheese, becca's taking a nap, and the tile guys are working on my bathroom..i have to run back to walgreens to pick up MORE medicine for jon..he's going to be taking something for his bowels to work better, and methodone for his pain..just a SMALL amount..to see how it goes..then next week we'll up and see how it goes..so poor guy - MORE pills!!!
even though today was long - what a FUN day to visit with everyone again!!! it boosted our spirits as well as theres...i forgot to mention that they had posted the newspaper article on their desk so everyone could see and remember jon - it was WAY fun --everyone at the hospital kept saying- your that guy from the newspaper- it was such a crack up!!

well i think im going to lay down for 10 minutes..even though i have a guzillion more things to do!!! thanks for your prayers- PLEASE keep praying for more movement and that this methodone will work well with his body and MOST importantly right now that this new medication for jons bowels will work too!! its SOOO important for that to work smoothly!! the things we take for granted!!!

never going to believe this!!

your never going to believe this!! jon can NOW move his right index finger!!!! SMALLLL movements- BUT STILL!!!!!!!!!!!!!!!!!!!!!!! hes moving it just barely from left to right- SO COOL!!!!

tuesday morning..

jon slept well thru the nite..he said he felt a couple times like an ant or a spider was crawling across his face..he said he thinks he killed whatever it was the 2nd time!! I HATE BUGS!!! i would SOO be going crazy!!!
he seems to be doing well this morning..the caretaker is feeding him his breakfast, and then we'll start the bowel program...katie should be here in a couple of hours to help for the day..
everyday jon does "exercises" in the morning..he moves his hips, his legs, his knees, his feet, his toes...in hopes that ONE day it might move JUST like the toe did...we ask that you pray for more movement..that is the next step and focus in our prayers..for movement...he's been working SO hard every morning!! i always come in and am amazed at his red face! right now he's been REALLY focusing on his hips and knees..he had me look today..it was hard to tell if they were moving or not..you start to WANT everything to move and sometimes your brain can do trick on you..by the time i was looking he was so tired from trying the hour before..that he said we'll have to come back to it--

i forgot to mention yesterday that we had a "plumbing problem" yesterday..so jon had me fix it! YIKES! and i dont mean a plunger - i mean open the sewer thing and pull this HUGE pipe out, and then sticking the snake in the sewer line thing and making it work!! and YEP I DID IT!!! allll by myself!!! it was quite comical-- as most things are with me and jon...picture this..jon in his chair..the sewer line thing i have to get to is in the 3rd car garage...jon tells me which tools to get..and says "you might want some latex gloves for this!" so of course i call my neighbor Matt instead!!! hahah..so now we have jon-wheelchair, me with the gloves over the sewer thing, matt and his wife amy..i got the sewer thing up with the screwdriver, and the line is FILLED to the rim with well ya know..sewer stuff..i look at him and say.."okay dont even tell me i have to stick my hand in that!??!!" he says "uh ya..you will need to put your hand in there- make sure you glove goes WAY up your arm so you dont touch anything!!" i said "NO WAY! are you for real???" if anyone knows the hales boys..they are good at making things seem real!! i know i just have to look at jons eyes, and if his eye brow wiggles..he's lying!! IT WASNT MOVING!! AAAAAAAAAAAHHHHHHHHHH -- so i look at matt and amy and say - matt is he for real??? matt says- i have no idea?!?! ive never done this! i just call ed the plumber!!
so now im scared..but hey im a big girl and can do this..so i stick my hand in..find the screw i have to unwind, then whoala - get the pipe up! YAA!! then i had to stick the snake ALLLLL the way down to make things move..and then after trying for a few minutes..all of a sudden it worked!!!! i think jon was TOTALLY surprised that i had done it!!!! jon said "dang honey - im so proud! but if you were a plumber- you work WAYYY to fast!!!!" i then ran all the water to flush it our real good and then put it all back together and washed my hands for about 20 minutes!!!! so dad- arent you SOOO impressed!!! Matt and Amy joked that if they have any issues..the now know what to do -- theyre going to just CALL ME..too funny!!
this makes me laugh..because jon ALWAYS would say - you need to come watch me do this because maybe one day i wont be able to..i always said OH PLEASE-we'll worry about that when we get there- i cant believe were there...he said that about the sprinkling system, the pool system, the computer, etc...and yet i always just said OH PLEASE..

good day...

today was a good day for jon..although he seemed to be in pain..he did good..he kept getting REALLY hot then REALLY cold..back and forth..and when you touch him..its like he's got icy frozen he's being slapped when you touch him - OUCH!!!!

at 7pm jon decided it was his turn to do FHE- SO NICE!! im usually the one that calls for it and puts it together- so it was nice that he decided to do it...we wrote grandma mikkelson letters..it was cute..

at 730pm i transfered him back into bed...then i headed upstairs and still had to get everyone else into bed..i was soooooooo exhausted...again just feeling like youve been on your feet ALL day at disneyland kind of tired..

by 8pm i just wanted to go to bed!! at midnite i will have to get up and cath jon, give him meds and rotate him..

a friend called and offered to MAKE my girls their white dresses!!! i was SOOOO excited!!! what a RELIEF that i dont have to go around town trying to find 4 white dresses for my girls!!!!! THANK YOU!!!

tomorrow we have an appt with the pain doctor..we'll see what we decide to do..

well now im too tired to think of anything else to write..so im off to get some sleep!

still moving...

this am jon was still able to move his big right toe..so YA!!! he slept well thru the nite..i stayed up till midnite to do his cath, meds and rotate him..it took me 30 minutes to do all that..he had alot of urine amount..so it took longer...
everything went as schedule..the bowel program took longer but we finally finished at 1230pm..hes now up in his chair...i fed him lunch..and now he's waiting for his OT appt to show up..which she's good about...the PT - totally different story! i just called to see where they are - its been 9 days..

HE MOVED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

YES!!!!!!!!! we CANT BELIEVE IT!!!!!!!!!!!!!! we had just finished getting kids into bed with my r/s helper..i came in to visit with jon...he was really cold..so he had blankets on him..i had taken the first blanket off..then the second blanket off..he then felt a big spasm that went all the way from his feet up to his armpit..so i went down and streched out his leg..THEN he thought to himself..lets see if i can do anything..so he tried to move his foot down..then he asked me to go look...
WOULDNT YA KNOW!!!!!!!!!! he moved is big right toe!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! were outRAGEOUSLY happy right now!!!!!! we then called ALLL of the family - its soooo fantastic!!!! so now he's having ice cream to celebrate and just keeps moving his toe!!!
THANK YOU FOR YOUR PRAYERS AND FASTING!!!!!!!!!!!!!! THEY ARE WORKING!!!!!!!!!!!!!!!!!!!!!!!!!!!!

so far so good..

well so far today has been good..he had good movement today..he's now in his wheelchair..ive fed him lunch..he's trying to stay up in the chair all day today..so we'll see how it goes..he kept passing out while doing the bowel program so that took longer then usual..but atleast were all good now..

YAAAA his bowels are working!

YAAAA his bowels are working!!!! the things were so grateful for i tell ya!!! YIKES!!
anyway- the nurse is working with him now..then i will transfer him in and out of the commode chair..im SOO HAPPY!!
im going to talk to jon and see if we cant work something out so that the nurses are up more during the day when i REALLY need help...if we can get jon to go back to cathing every 4 hours instead of 3 that would help A LOT..so we'll see..i need to work with jon to figure out a better schedule so that we can get him working out more to strengthen what muscles he has left...
THANK you for your prayers- they worked again!!

saturday..

sorry i havent written in here in a bit..its been another one of those busy days...
jon slept well thru the nite, i got up and got all the girls dressed up in their princess outfits for anna's princess party..which turned out REALLY cute!! i had to send the girls off without me because i was still here doing transfers with jon for his bowel program..but then i left after that..

we came back from the party and sheldon was here hanging with jon..then i got him into his wheelchair but he kept feeling like he was going to pass out..and he was SOOO white! sheldon and i propped him up against the couch in a pressure release position..he ended up sleeping like that for over an hour..

we TRIED so hard to get him to where he could go over to the campbells..but he just couldnt do it..so he asked to be put back in bed..then i set up the laptop so he could watch lord of the rings..

celesta and kristen picked me up and we went the the campbells open house and then hit the movies..im home now and jon is ALMOST done with his movie..the girls are sound asleep..

jon said the girls REALLY missed me tonite..and he really missed me tonite too..i have to say its SOOOO hard to do anything knowing how people feel when im gone..he was holding my hand and said its SOOOOO sad that im holding your hand and cant feel you...i cant even feel the warmth of your hand..all i can feel is a little on my thumb and my index finger..but not much..everything else is just pressure..its just so sad that i cant even feel your warmth..i miss that..
anyway - i tried to just hold myself together...we just sat there quietly...its things like that that make it rough... i REALLLLLY miss my old life...really miss it..i miss being normal..the way things use to be...getting a sitter and going to macaroni grill...sorry-- im just having a moment here...

for the most part jon had a nice day...he's having bowel problems so were PRAYING that it gets cleared up tomorrow in the morning..when he uses this ducolax..it makes him weak, tired and lightheaded..so were working other natural things to use..we have to say though since being off effexor - he's 100 times better!!!! we're seriously looking into the baclofen/morphine pump..this is something that would be inserted into his body..and MICROgrams of medication is pumped into him..this way he wouldnt be taking 30 pills a day and it would REALLY help him in his bowel situation..we have the pain management appt on tuesday= so we'll see what we decide to do...

i dont imagine we'll make it to church..because of jons situation..so the McGee's will be here to pick up the girls for us again..

right now..he's tolerating the pain REALLY well...it seems like his bowels are the thing thats giving him his issues right now..he's ONLY in bad pain when he has these issues..and so taking stuff also makes it worse..we need to pray together for us to be enlightened with something that will work with his body..that one of us will be guided towards the right thing..we cant keep him on laxatives and everything that he's taking..these can only make things worse down the line..so please pray that we find something..otherwise..everything has REALLY improved well!! he hasnt had any UTI's since he's been home - a HUGE BLESSING! he continues to go in his wheelchair without the abdomen belt - HUGE BLESSING! he's eating a lot more- HUGE BLESSING! he's been able to get work done- HUGE BLESSING!- so we do have TONS to be thankful for-- we just need this one thing to work out to see further improvement..which will happen i just know...

if someone is able to get in contact with the Rushton Family..Jon is anxious to hear about all the new cool technological stuff for the computer..he REALLY wants to start interfacing with his computer..thats who jon is-- all about the computer..he's ready to do that now..

well i hope tomorrow works out for him..i will continue to keep you posted..

i also need someone who can help me with the girls on the 16th of june when Mark and Jennifer get married..i will need someone to help me with the girls keeping them outside during the sealing..i imagine we'll just have the nurse there with us during the day..which brings up another point..

im kind of frustrated because i have one girl who comes tuesdays at 8pm- saturdays at 8pm which i pay 165 per day..then someone from saturday 8pm - tuesday 8pm that i pay 200 per day..here's my frustration..right now jon is ready for bed by 10pm COMPLETELY ready to go..then at 1am he is cath'd, meds and rotate which takes about 20 minutes if your good and 30 minutes if your a bit slow..he does this again at 4am and again at 7am and then he's up at 9am he's having breakfast...THEN jon starts his bowel program of which im still here because only i can do the transfers due to the caretakers limited physical abilities..then by 11am..the caregiver is done with jon..so they go upstairs to sleep until about 5 or 6pm..then they feed jon dinner and prepare him for the nite..during the 11-5 or 6pm time im doing everything for him...
i feel like they do a LOT of sleeping!! i feel like i'd rather get up at 1am and the caregiver get up at 4am and then im up again at 7am (since i go running at 730am -it would be good) then i have the caretaker up during the day since thats when its MOST crazy when i have all 4 girls home AND i have the FULL responsibility of jon!
SO its really hard to feel like im doing SO MUCH all the while paying one person 165 and another 200 and they get to sleep alot!!!! ( i pay one girl 200 because she says she has experience with kids -so since she has that she deserves more pay cuz she's "helping with my girls" which she has yet to do)...anyway - now im rambling..but this is REALLY frustrating for me because A) i feel like im paying too much for them B)i feel like they get to sleep more then i do C)they dont help with any of my kids D) i have to tell my kids to "be quiet" all day because the "nurse is asleep" E)im doing all the transfers so i cant ever leave F)im his full time nurse during the day so again i cant leave -- anyway get my picture!!! so i dont know...maybe i just need to try that out...both jon and i feel like were paying WAY too much money for it to not be working out better for us..
i feel like i cant do ANYTHING with my girls..because during the day im "helping jon" all the time..my girls miss their mom...they are carted off every morning to someone else's house...then during the day im always saying "i cant because of daddy" or "be quiet the nurse is sleeping"..i cant put them to bed "because im helping daddy" anyway - now im just rambling again..but these are my thoughts right now...

well i guess i will end my rant! jon wants me to just sit next to him and fiddle on the computer...so thats what i'll do then i'll go to bed..its getting late now..

thank you SO MUCH for your prayers on our behalf..we will TOGETHER get thru this..not just me and jon but ALL OF US will get thru this..i know it will be because of the united faith of all of us that he will walk..it doesnt get ANY simpler then that..its just the way it is..and i believe..competley..so thank you for giving us your faith in this journey..

just a great day!

jon says today was just a great day! he said his pain stayed at about a 5 or 6 all day so thats SO GOOD!!! he did take another ducolax tonite to see if it would work tomorrow morning for his bowel program..please PRAY that it does!!
jon said he really enjoyed his day today - thanks mom!! its now 930pm and he's getting ready for bed..he takes one more pill at 10pm and gets cath'd then he's good till 1am..he's been getting cath'd, turned/rotated in bed and meds every 3 hours thru the nite..and he says he's been sleeping thru 2 out of 3 of them so thats great news too!!
im SOOOOOOOOOOOOOO happy about the progress were making!!!

another good day today!

jons having another good day today! his only discomfort is this ducolax thing..he says when anyone touches him it hurts...other then that he's been in his chair still and were just waiting for dinner to get here..
we have some friends coming over at 730 to have ice cream for a little bit..
sandra has been here and helped him with things on the computer, took him to go get the mail, sat with him outside..nice day!
i took the girls to see over the hedge- CUTE movie! then i came home and have been working on medical paperwork - INSANE!!! ive got it all filled out and now need to get it over there..i have a few other things i need to get copies of then im good..they will know now our ENTIRE life! scary!!!
thanks for the prayers and concern - we truly feel so lucky to be surrounded by awesome family members and friends and ward members- we never want to move!!!

peaceful nite..

jon had a peaceful nite last nite..he woke up in pain though we have figured out its due to this one laxative he takes when he gets constipated..due to the 30 pills he's taking PER DAY! its called ducolax..anyway it causes him a lot of pain when he takes that..so this am he's in pain again..
weve switched the bowel program to the morning time..we've got about 15 more minutes to go then we'll get him ready and in his wheelchair...

today will be a light day..i told the girls me or grandma would take them to see a movie while becca naps..

We'll have to wait and see how jon progresses thru the day..when he's in pain..its not fun stuck in a wheelchair..so we'll see and i'll keep you posted!

really good day today...

today was a really good day for jon...he stayed at a 6 the whole day...he was in his wheelchair from 1130am on..so thats great!!! Scott came and they got a LOT done for his magazine -which jon is SOOOO THANKFUL that his dad and scott have come out to get that going!!! THANK YOU GUYS!!!!!!!!!!!!!!! if you know jon, you know he HATES sitting still!!! he's the most productive guy EVER...so this is soooo good that he's getting back to things again...
the OT girl came today- im going to have to bug someone to figure out where our PT is..you really do have to stay on top of things!! she gave him a bunch of weight things to have him exercise with..she was trying to give him all this information about a group called "possiblities"..they play sports together and stuff..jon was kind of like..okay thats really great- but im TRYING TO WORK on my business here!! thats WAY more important then me playing a sport right now..anyway - makes me chuckle how he's so nice to them..but i know he's really thinking something else in his head!
im just so thankful that jon had a good day today- i worry for tomorrow..it seems he has ONE GOOD day then it all goes down hill!! ughgh..so we'll see what happens tomorrow...but you can all sleep knowing today was SUCH a good day!!

I did end up going to the shower tonite with rachel and sarah..it was nice..on the way home i thought about when i was having my bridal shower..and i thought about how young we were, full of life and energy and open to all the possibilities that were going to come our way...i NEVER would have thought that it would include something like this...at our age of only 33 and 31 ..we feel like we.re living like 80 year olds! sorry if that offened anyone thats 80!!??? our lives are so drastic, we've gone from being so spontaneous to almost prisoned at home..jon cant really go anywhere..and im pretty much here as well taking care of him..i cant go too far for too long..he's popping 30 pills A DAY and that is NO LIE...i could go on and on about how our lives arent the same...i guess what i want to say is that everyone out there appreciate how good their lives are..if something isnt right in your life..change it...if you could be doing something better in your life..do something better..

tonite jon asked me "so whats going on in your life"..he kept falling asleep as i was trying to tell him...im not sure if i was just boring him or if he was truly falling asleep! i think i was boring him though!! This is whats on my plate right now, im working on finding 4 white dresses for these 2 weddings coming up, a black one for myself, getting jons suit altered, finding someone who will be able to stay with my kids at the temple for each wedding, remembering to go get the mail..its been 5 days now - OOPS i forgot AGAIN!, making sure the "house projects" are getting done-the upstairs bathrooms, the downstairs flooring, etc, making sure jon has continuous meds-which means running back and forth to wallgreens..they know me by name now, making sure i stay in shape so i can keep transfering him..im doing the transfers all by myself, and LITERALLY all by myself, i dont use any contraption or machine..its a certain technique i was taught at the rehab center, i can literally lift jons body and get him from a bed to a chair and back again..anyway- just the usual "making a house a home" and all that that entails to keep harmony in our home..only now there are 100 extra things to do..i think i'd scare him if he really knew everything i was doing!!!

well i need to get done here so i can go to bed..im waking up EARLIER to go running - which is amazing in itself -im NOT a morning person! but i recognize my need to run, on MANY levels..most importantly for my sanity, to help christina still be "christina", to stay in shape to help jon, etc..oh and of course the best reason is so robert will pay me the money for losing the most weight in the hales weight loss contest!!!! hahahh

Thank you everyone for your help, in SOOO many ways..for all of your prayers most imporantly, because your prayers are thee most intimate private thing you can do for us..and we thank you..also for your service, i have food coming in each nite, i have childcare in the mornings from 9-12pm, i have childcare/bathtime at nite from 730-9pm each nite, i have sisters that come tuesday, thursday and saturday to take my laundry and bring it back clean and folded, i have sisters that come every wednesday to clean my house for 2 hours, i have men come in every other day to do range of motion with jon, we have a couple that comes every sunday morning to help me get my girls and jon ready for church, i have the bishop and r/s pres that help me get food at the bishops storehouse..were so grateful!

We also want to thank ALLLLLLLLLLLLL of those that have donated to the fund...as of now we have raised 55K -- AMAZING!!!!!!!!! THANK YOU THANK YOU THANK YOU!!! That money will help us to take care of SO MANY things..its just wonderful!

good nite...

jon had a good nite last nite..he's feeling good this morning..we decided to change his bowel program to in the morning vs at nite..i hope this eases things up around the house here in the evenings!! it will hopefully allow me to work on getting the girls to bed each nite..we'll have to see how crazy it gets at nite..
he's eating breakfast then we'll start the program about 930am..we should be done by 1030 then he'll start his bed bath and ill get him into his chair for the day..

i believe he has a PT appt today and an OT appt today as well...

im going to head down to OC tonite for Jennifer's bridal shower and take rachel and sarah with me if they'd like to go..Scott is on his way here to help jon put the magazine together...YAAA to dad for helping jon FINISH up the article!!! then ill have scott help to transfer him back into bed for the nite, and since the bowel program will be done, this allows me time to go to things in the evening such as this shower tonite..

THANK you so much for your prayers and being SOOO PATIENT with us thru this trial!!! when we have good days- i REALLY appreciate the GOOD DAYS!! having such bad days helps you to REALLY enjoy the good ones!!!