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!!!

what a day!

well to start off-- jons pain was about a 6 all day..so thats GOOD! right now at 830 its heading towards and 8..we're getting late getting dinner fed to him and stuff..he's anxious to get back in bed and go to sleep for the nite..
he stayed in his chair all day since 1230pm..so again thats GREAT!!!
we headed to the appt..THOROUGHLY frustrated with the doctor who had THEE BIGGEST EGO EVER!!! so frustrating...anyway - jons blood pressure from the nurse was 90/60 then about 30 minutes later the doctor took it and it was down to 78/58 - WEIRD! its never been THAT low..anyway - he said we needed some sort of blood pressure med to keep this pressure stable..we KEPT SAYING its ALWAYS 97 over something it STARTED jumping up because he's gettin SIGNS of dysreflexia!!! he kept saying well he shouldnt have a pressure so low as 78..anyway -i wanted to just tell him TAKE IT AGAIN already!! anyway - frustrating..
the other thing is he basically told us he's been having dysreflexia this WHOLE time but its just now more prominate..he explained the headaches away with something else..anyway blah blah blah mixed in with ego ego ego..get my frustration!!?!??!
WHAT a waste of 2 hours we felt..i was SOOO mad..i told jon when the doc left real quick that he wasn't addressing our concerns and im going to start up..he said go for it..so when i did..he just kept repeating the same thing..and i felt like jon was just done with the doctor all together so i just gave up talking as well and at that point just wanted to get out..we then went over to the lab so they could take a culture of jons urine..
while cathing him in the bathroom..we were BOTH TOTALLY frustrated with the doctor and eachother..we both broke down..were in the middle of this bathroom of this clinic just frustrated with everything..anyway - it wasnt pretty...
we came home and had some dinner..at which point jon asked the nurse for him to have a few minutes with me..so she went upstairs..jon then apologized for his behavior in the bathroom and for taking his frustration out on me..he said "how can the angels administer to me when i have a spirit such as that"..anyway - it was touching..and he apologized and asked me to have him take a deep big breath should something like that happen again..so then we wiped our faces off because we had done so much crying by that point!!
he's now getting settled for the nite..and im feeling HORRIBLE because rachel's been wanting to spend time with me since the other girls havent been home and ive been rushing here and rushign there and "trying to help daddy" i feel SOOO BAD it just makes me cry, cry , cry...im mad because she wants me to go in the spa with her and "talk" but i cant because im stuck helping jon transfering doing the bowel program..anyway - now im just rambling on and on...

for the most part jon is doing good..he's improving..the doctor talked to use about getting a morphine pump..which we have thought about..were still trying to figure out meds..jons a little hesitant about the pump till the drugs have been figured out first to see if they'll work..so we'll see what we decide at the pain management appt which is next week..he also said that jon was a C5 injury..but you can either have issues below the injury or above..obviously jon is below..he's really more of a c6, c7 injury..were SOOOOOOO THANKFUL AND WHAT A MIRACLE that its c6 and c7 vs c4...if it was c4..he would for sure have been like christopher reeves..WHAT a blessing RIGHT THERE!!!

i want to thank ALLLLL the sweet little primary kids that pray for jon and especially for the ones that fast!!! SOOOO WONDERFUL!!! your faith is so beautiful!!! thank you thank you thank you!!!!! we want you to each know that its WORKING and were SOOOOOO grateful!!! im so thankful that your helping me to help jon not have pain!!! THANK YOU!!! although today was a rough one emotionally and all that happened..were trying our best to keep an eternal perspective..