Jon did GREAT!!

jon did great!!

The pressure is on!

Jon is feeling the pressue with his Talk he is giving this sunday, he had plans to write it all out today only to realize that for SOME REASON our laptop that has his voice software on it KEEPS FREEZING AND SHUTTING DOWN!!! rghghg so irritating!!!
so dad's laptop is coming up tomorrow that also has the software so hopefully he can get that done tomorrow..
he also has a few articles he has to write and a magazine layout to put together before jan. 5th the deadline to hand it over to the print company! YIKES!! he's getting a little stressed out and the pressure is on..
he hasnt been feeling well the past couple of days..we think its due to his backing off the baclofen AND the dilaudid..hopefully that will subside and he'll be okay.

He's IN!!!!

Well we received a phone call today from project walk...he's IN!!! YA!!! jon is SUPER EXCITED!!!!!!!!!!!!! he will do a week long trial starting jan. 9th, then on the 11th and the 12th, then again the next tue/thur ...then we'll go from there..

if you want to be inspired and motivated like jon is..we HIGHLY reccommend that you check out the website at www.projectwalk.org..its amazing!

well- just wanted to update everyone..

faxed the application

www.projectwalk.org

well we have filled out and faxed our application into project walk, i suppose we'll receive an email or phone call for an interview...cross your fingers and say MANY MANY prayers for this- jon is SOO motivated that it brought him to tears...he's backed off the baclofen AND dilaudid (which he's been working on before)..

i will keep you posted on the progress of project walk..

it is in carlsbad-so we will have to drive there for the sessions...

speaking of dilaudid- he's been soooooooooooooooo cold...and yesterday he said he wasnt too cold..he realized that maybe it was his body coming off the dilaudid-so lets hope that was it and that he's not soo cold all winter long!!!

YA for jon!

after watching, reading, and getting frustrated that the past information ive posted has not been offered to him or mentioned by any doctors..he's DECIDED to come off the baclofen!!!!!!!!!! im so happy!! he has been SOOO hesitant about doing so - thanks robert for you help-im not sure who (family or friends) or just having him watch and read about it-but he's decided to come off of it completely..
he started today already..he's been on 20mg 4x's a day..he's backing them down to 10..then he'll go off completely..SUCH good news-and it will be perfect timing for the research project he's doing come january..

he's REALLY motivated and inspired to work hard..we're so grateful for the progress medicine has made AND for the idea of "people with SCI can be in RECOVERY not REHAB!"

very interesting stuff

i continue to effortlessly gather more and more info to try to help jon..this is what i found today..check out all these people with a c5 injury--it sounds like having spasms is a good thing-which jon has-
he has noticed that when he spasms he is able to MOVE!! so we may think about getting him off baclofen to get more moving happening!!

http://projectwalk.org/clientLocatorNew.php

EXCITING NEWS!!!

check this website out!! EXCITING NEWS!! this is what jon will be doing for 10 weeks (2 days a week) in january..

http://news.yahoo.com/i/2614

then scroll down to Supermans Foundation and Legacy

Friday..

Today has been good..the past few days have been good for jon, he has ANOTHER UTI which i need to run to walgreens to pick up antibiotics for that..
i just gave him a haircut and trimmed his nails so he's looking and feeling better..

my dad put on the emtion wheels so he's MUCH more mobile and can get in and out of the front door all by himself..he likes the freedom..he's been outside on the sidewalk with the kids..

we went to the cal stat LA and were REALLY excited for the possiblities there..it will be a 10 week session (mondays and wednesdays-i will take him mondays and robert will do wednesdays-i will need help on mondays as we will need to leave the house by 1230-1pm and will not return until about 7 or 730 due to traffic-UGH! if anyone is able to help me on mondays it would REALLY be helpful and again its only for 10 weeks)
they will exercise extensively with him AND put him on the "gait" machine, where they strap him in and he is suspended by the ceiling and there are two guys working his legs and one on his waist and he walks on a treadmill..so that was encouraging! they said there are NO LIMITS as to what they will do with jon, if he wants to try something-they'll do it..thats also encouraging..so its like therapy for free..we wont have to pay for it-which right now is helpful too!! so we are REALLY excited about this prospect and what it will do for jon..this is the 5th year they've done this research project and were excited to be apart of it..

we may also be taking a "road trip" at the end of this month to Danville, CA to chads house- his oldest son Aden is turning 12 and will be ordained a deacon, all the family will be there and so we may try to make it happen for us...it will take TONS of work on both me and jon, but its family! so with a lot of help-we hope to be able to go and to do all that needs to be done when we are there.

well that is about the update here- i have ALL my xmas shopping done AND wrapped-just need to figure out what to do for both sets of parents-our family does xmas ornament xchanges vs gifts (MUCH easier for all of us!)so i even have my ornament picked out and here at my house ready to give..

hope everyone is enjoying their holidays!

jons being interviewed for research project

jon is going to be interviewing this wed at University of Los Angeles at 12noon for a research project- here is the link:
http://www.robomedica.com

i will need to find someone who can be at my house for most of that day on wednesday, we will need to leave around 10 or 1030am the session is only for an hour then we will return home between 4-5pm hopefully!

jon is doing well! he's been asked to speak at our ward's xmas eve sacrament at 9am- anyone who would like to come - FEEL FREE! he'd love to see you there! i plan on inviting a lot of our neighbors who supported jon at the fundraiser- i think it would be great for them to hear from jon..

jon and i had a date saturday nite with our friends- a quick dinner which was fun, we also had fast sunday with jons family last nite- which is always fun..he's doing well, working on getting himself onto a schedule, staying in his chair longer, all and all he's doing good!

back from rehab

now thats a lovely title!!

we left for jons rehab appt at 1150am..my mom made it here just in time so that worked out great..we pulled into the rehab an hour later and got ourselves checked in..we met a nice guy named mark who use to be a programmer and didnt like working long hours to help someone ELSE make millions..so he went back to school to be a PT..he's currently a student and working under a PT at the rehab place..so him and jon will have fun talking techno nerdy stuff i imagine as i sit bored listening!! heheh

he did lots of measuring and what not to have a baseline and then asked for jons goals..so to begin they gave jon LOTS of exercises and stretches to do and then we will go in once a week to learn new skills and come back home and work on those till the next week...then once jon is in better condition they'll do other things..jon said he wants to become more independant..as of now, im doing all of his transfers and most everything else for him..so we'll see where this goes..

we left the rehab at 230pm and got home at 4pm..the times to pick for his other appts werent that great of times to choose from! it was either 1030am or 145pm..so we either hit traffic in the morning on the way down or on the way home..so i picked the 1030 and figured maybe the traffic wont be as bad as the other time..

he's home now and CRASHED out on his bed asleep..he must be really tired because we've had 8 kids here in the house and all the chaos that goes on and he hasnt budged! poor guy!

our friend that comes over nightly has worked out a daily schedule for jon so that he has time to workout, do his business, spend time with family, etc..so this has been great! they still need to fine tune it=then jon will be in business..were SO grateful for such good friends that care so much about him and are willing to sacrifice their time..i truly cant do all this alone and im thankful for family and friends that help!!

we know famous people!

our friends jeff, christine and their family are going to be on tv today at 1pm set your DVR's! jeff was the MC at jons fundraiser (which he wants to do again!-so nice!)
http://drkeith.warnerbros.com/
here is the link for a preview thing..

today i will take jon to his rehab appt at 1pm in downey, my mom is coming up to care for the girls..

i will update when we return..

we are going to try to get jon on medicare so that we arent having to pay 566 per month for insurance coverage for him and myself..if he can get medicare--his premiums will be paid for and have 100% coverage with 10 dollar copays..then we'll do something A LOT less for me since im in good health..so cross your fingers!

Sunday

WHEW- its been a while since i posted..jons doing good..he's having a hard time getting and staying in his wheelchair..after 8-9 weeks of being in bed constantly..its not easy to get back into the swing of things..i find myself sometimes forcing him to get up and get going..its so hard for him though..but once he does it..its a little bit better..

we had tday at jons parents house on sunday and then my parents house on tday..SO YUMMMY!! the 2 older girls actually went with the hales up to kristi's house for the rest of the week and got home late last nite..they told me all about it and apparently rachel was REALLY good and helpful- makes momma proud!! whoo hoo!

today everyone is home and hanging out..this week on tuesday jon has his rehab appt-so that will be a long day for the both of us..i believe its at 1pm again in downey..
well see how that goes!

Monday

Yesterday was great..we did church..came home..made homemade rolls for thanksgiving dinner at the hales home that nite..got everyone ready and out the door..

we had a great time at dinner! its fun seeing everyone and catching up with everyone!!

while making the rolls yesterday..becca took off with my wedding ring- YIKES! we figured it was either outside on the grass or in the house somewhere...

this am i got up and went searching for the ring..i told the girls i'd pay them 10 bucks if they found it for me..they had even said 2 prayers yesterday when they started looking for it..so cute! the whole time i just KNEW i'd find it..it was just a matter of time..

today while the girls were looking..i was cleaning up the kitchen because i couldnt function being it a disaster and as i turned the disposal on..the downstairs bathtub filled with sewege...UGH what else could go MAJORILY wrong today!??!?!?!
so i had to go put my plumber hat on and do what i did last time to clear out the sewer thing..good times..i almost threw up twice..but walked away for a second and came back to it..i have respect for those guys now!! i managed to clear it out and make everything work again...

as i was finishing up sarah came yelling "mom i found your ring in my room!!"

what started out as a horrible day..has ended well and its only 1230pm!! NICE!!

jon is doing well..he's getting in his chair more and more..he's on his laptop working now..he's trying to remember to switch positions..sometimes he leans back and sometimes he leans forward..but its hard because that means i have to constantly be here every 30 minutes to help him..so he's trying to find ways that he can change positions without having to keep me here all the time like that..

his sores seem to still be doing okay..and not changing..so that is good..

well it looks like my 2 older girls will be heading up to utah with robert, sandra, scott and kellie to kristi's house..they will leave tomorrow nite and come home saturday..my girls are excited..of course it was all about which video games they could bring in the car to play on grandpa's laptop!! GEESH!! how times have changed huh!!! it will be nice having them gone for a few days to keep the house quiet..its really hard on jon to have screaming girls throughout the house..i started a new thing with them and told them each time they did somethign wrong or screamed in the house..they will have to clean something..i started today..i have to say my stairs look GREAT!!! needless to say..my stairs look nice and i have yet to hear any screaming..next episode will be the bathroom..i thought that was a great idea! i figure i'd mineaswell kill two birds with one stone!

what a day..

today ive spent ALL day trying to get jons dilaudid medication and it has NOT been easy for me..but alas at 830pm..we finally have some..
it started with me needing the prescription-which was waiting for me at the dr's on tuesday..the dr said she called to the pharamacy downstairs and it would take till thursday to order it in..so today i went..but they didnt have ANY because they didnt know if they were SUPPOSE to order it or not! UGH BUGGGED!!! THEN we got new insurance and after making 10 phone calls..we come to learn that yes we were approved but hadnt made it all the way "thru the system" yet..so we werent showing up! UGH BUGGGED AGAIN!!
so i had to take it to ANOTHER pharamacy and give two prescriptions for 2 different dosages to make it work AND pay cash on top of it..anyway..now im just really tired!

jon stayed in his bed again today..i think tomorrow he'll feel more up to being up and around in his chair a bit..his mom and maybe dad are coming tomorrow to help me out for the day..they typically come around 2pm..we're VERY blessed to have jons dad come on wed's afternoons to help and then again on fridays..THANK YOU!!!

well time for me to go cath jon and get kiddo's to bed-i told them tomorrow morning if they are good and NOT screaming and giggling in the early hours of the morning..we'd take a bike ride to the donut shop-they are SUPER excited about that..good times

Wednesday..

Today is Wednesday..Jon is offically healed from his sores and has been discharged by the nurses that have come daily ..YA!!
His blood pressure remains really low which makes it hard for him to be in his chair..we're currently working on that to raise it..he's on medication for it but it seems to remain at 80/60...
We're going to be working on getting him back into the chair daily so that he can build his tolerance back up again..

We'll be having tday with jons family this sunday and then tday on thursday with my family - YES two of my FAVORITE meals in one week!!

My bday is the 25th of this month- im looking forward to it because it may mean i get a break from having all 4 kids home for 10 days in a row!!! they have parent teacher conference the next two days and then ALLLL of next week off- YIKES.

Saturday..

Its now saturday- been a while since i last posted about jon! he's doing well..we made it to his urology appt- he gave us more neosporin solution for his bladder..so we will be doing that twice each day to help..
last nite we made it to the newport beach temple for a temple session with robert and sandra..that went well too..jon was really emotional..he's been kind of sad lately..
Today he is doing well..he enjoyed getting out of the house for the dr's appt's and for the temple as well..we saw Pres. Baron when we walked into the temple- thats always a treat for me! i love pres. baron- he's one of my most favorite people..

There is nothing really going on this week for jon..russell continues to come over faithfully every nite at 830pm to stretch jon..sheldon brought over jon some workout gear for him- jon was SUPER excited about that!! he's been doing that here and there..i really need to work out some schedule time frame thing for jon so he gets that done everyday! jon also wants some how to rig up an exercise bike that he can strap his feet to and have someone help him to have him think about pushing the wheels as its going..if anyone is capable-let me know!

As for me-things have been hard around the house- just trying to keep it up..its hard to keep the house in order, kids on track, homework, all of jons care..etc..i have a friend who is going to start coming over twice a week to help me with the house..when it gets sorry looking..its hard for me to function!

well jons nurse is here..time to go help!

Back from the evaluation

Well today we left at 1130am for the evaulation and didnt get home till 5pm..YIKES!

the evaluation went well..the facility is a county place..meaning all the medical and medicaid are going there..we got checked in and seen by a doctor who pocked and prodded jon in different places to get an idea of his condition..he had mentioned that his body had done quite a bit of improvement since he left loma linda..

he gave us an immediate referral over to the OT and PT there..so we walked over there and they gave us a quick appt for nov. 28th at 1pm..there they will eval him there and tell him what they can do for him for OT and PT..we noticed the dr had marked off mobility/locomotion..which means putting him in a standing position with a harness and making him walk on a treadmill..i cant EVEN IMAGINE what that will be like!!!

so all in all it was good..jon was sooooooooo tired when we got home..he fell asleep for a good 2 hours SOLID and the girls were CRAZY screaming and chaos as usual and he NEVER WOKE UP ONCE!!! he must have been so tired!! we had all eaten dinner, had showers etc..i woke him at 7pm to eat..he had NO IDEA we had done any of that!

i have to thank cara arnold for coming over to help me with the girls..she's always SOOO nice and helped clean up my house! im so lucky to have people that care for us!!

well off to get kids in bed..we did fhe (the fall of adam/agency)..ice cream..and now bedtime..then im off for my nightly 30 minute walking!!

Whew its sunday already!

these weeks are going SO FAST for us..

today jon made it to the full 3 hours of church
tomorrow he has his rehab evaluation appt-it will be a LONGGG day for the both of us! i have a friend that is able to come watch the girls till we get back..SO NICE!!

our friend russell santos continues to come nightly at 830 to stretch jon and has begun to do more rotations with him..and its really helping!! jon is SOOOOO thankful to have a friend that is so dedicated to making him heal..we're lucky to have friends that care so much!!

the hales had come over on friday to help me and jon out..it was a good time..we made chicken tacos for dinner..watched the oprah show about how to lose weight- were sooo motivated now!! and then sandra and i snuck out to kohls for about an hour..and then we came back for apple cobbler and the game apples 2 apples- SO FUN to play!!

friday nite we are hoping to get to the newport beach temple for a 630pm session with the hales family..something we are starting monthly...i will need to line up a sitter for hte girls at the hales house and then we're good to go!

Wednesday Nov. 1st...

Wow can you believe its November now!!! Getting close to 8 months since Jons accident. He's come SO VERY VERY far its amazing!! We continue to pray for more movement and move improvement and healing...

He has his rehab evaluation appt on Monday at 1pm. Jons parents are coming with me to go to that. Its at 1pm in Downey.

His sores are ALMOST healed up! 1 is completely healed- his original one, then his 2nd is closed up and the 3rd is on its way.. so this is GOOD NEWS!!!

His spirits remain high- he did SUCH a good job at the fireside- he had the youth riveted -it was awesome! it was the perfect length too- not to short and not too long--which is always important - especially to the youth!!

He had TONSSSSSSSSSS of visitors last nite during halloween! he LOVED it! he felt so loved and remembered and thought of by everyone that kept coming over!!

Jons dad came today - the magazine is COMPLETELY done and being delivered tomorrow! We cant believe it came together! we wouldnt have been able to do it AT ALL without jons dad and my dad's help- they literally saved us!!!! THANK YOU BOTH!!!!!!!!
The new magazine is now on the website..www.outsourcereport.com..

Well time to have family prayer and get candy filled kids to brush their teeth and hop into bed!

Sunday

Today is SUnday..we took jon out last nite to the ward trunk or treat..he enjoyed going with the family and seeing everyone..

today he continues to prepare for his Stake Youth Fireside Talk he was asked to give on tuesday..its tonite at the SC at 7pm..his parents and two of his brothers along with my parents are coming..he has SUCh a great support system!!! im going to try and give him a haircut if he can handle being in the chair for 15 minutes..he TRULY needs one!!

Here is a picture of the girls heading out to our trunk or treat..they are REALLY excited of course for tuesday nite.."the real deal"..

Jon continues everyday to try to move something..its something he visualizes everyday..we're going to figure out how to move his legs like on a bicycle and have him visualise that he's doing it himself..

We've been VERY grateful for our friends that have come to help stretch jon! we're always in need of that!! it REALLY does help jons pain be lowered..so we're very thankful!!

back from the dr's

well the appt went REALLY well today..jon is improving!! he actually had reflex when they tapped his knees- both of them! SO EXCITING!!!

he is changing some meds a bit..his blood pressure AGAIN was 80/50..so he's going back on blood pressure rising med..and he added another med for his increased muscle tightness....

all in all it was a great visit..

Wednesday..

today jon is heading the the neurologist at 1145..we'll see what he has to say..

jons doing okay..his close friend is doing a GREAT job of coming nightly to help stretch him-- thats so nice!!

the nurse measured his sore and last week it was 1.76 centimeters deep..and now its .5!! GOOD NEWS!!!

also jon is in the news!!! here is the link..he's super excited to start getting noticed!! here is the link:
http://mag.awn.com/index.php?ltype=pageone&article_no=3049

Monday..

We'll weve made it to monday! i stayed in my room all day friday, saturday and most of sunday..i was out making dinner and pumpkin chocolate chip cookies for dessert..im feeling a little better..im just trying to stay low so that i dont go back to being sick..im still taking the antibiotics to clear anything up..im also still chuggling vitamin C whenever i can too!!

Jons doing well - i helped him find a printing company that will print his magazine...first its a LOT less expensive for us and second..instead of a turn around time of 3-4 weeks it will only be 7-10 days! WONDERFUL!!! he is REALLY excited!!! Sheldon just helped him redo a few things to be able to ftp it out..so now its ready to go and jon couldnt be more happier!!!

well thats the update..im trying to take it easy-i just had a phone call of a friend bringing us dinner tonite- SO HAPPY!! THANK YOU!! jon continues to still stay in bed..but his sores are getting better..today the nurse will be here shortly so ill look at them again..

we talked to our insurance agent..and he's going to try to work it out so that the rancho los amigos place gets paid by our new insurance..and make sure it all works out SO that would mean we'd only have to pay for the copays!!! EXCITING news again!! im anxious to hear back on that..i'll find out in a couple of days..

we've had our friend come almost nightly to stretch jon..it seems to really be helping his burning pain- were so grateful for friends that are willing to do anything at anytime to help us!!

well back to work!

Friday..

well i went to the dr's and she is treating me for strep..and she said to look to see if i get a rash..if i do..that means i have mono..GREAT thats what i really DONT NEED NOW!??!?! im pretty achy all over, a little light headed, chills here and there, sore throat and headache..also my blood pressure was 101/62..yikes..
so i have spent the day up in my room away from everyone..i use my gloves anytime i have to do anything with jon..luckily sandra knows how to cath him...so i didnt have to do much with him..i just rotated him one time today..she was able to do the rest..SO NICE!!!
jon is doing well..both jons parents have been here since 1030am..sandra will prepare jon for the nite and then i will get up at 4 or 5am to do the nightly routine..hopefully im a little better tomorrow..i REALLY cant get jon sick...
it could be seriously dangerous..
grandma took the 4 girls to the pumpkin patch..they had so much fun..also their costumes i bought off of ebay all arrived today in the mail..so they were THRILLED to try them on!!! ebay is REALLY nice..instead of paying 15-30 for a costume i got each of them what they wanted for 5-12 dollars..cant beat that..especially when its only for one nite!!
the nurse told jon that she's putting in less and less of the packing strips into jons sores..so instead of 2 months ..it hopefuly will be more like 2 weeks..so thats more good news..

THursday..

Today i had a friend come over and help me clean all day..and my parents came out and my dad helped jon totally complete the magazine SO NICE!!!!!

sadly i've come down with a TERRIBLE SORE THROAT and some aches! UGH! it came fast and strong..im making an appt tomorrow with the doctor for a culture to make sure its not strep..thankfully robert and sandra will both be here tomorrow to help me out..the less im around jon..the better for everyone..

jon is doing well..he JUST started moving his finger outward AND curling his left thumb!!! unbelievable!!!! how awesome is that!

well its 8pm..i need to start getting kids into their beds and crashing myself..hopefully i dont have anything too serious..

Wednesday..

today we had alot of people here all at the same time- it was kind of funny! within 15 minutes we had jons dad, my dad, warren owens, a doctor and the nurse!!

the nurse talked to jon about his sores and told him he'd be okay to sit in his chair for an hour or two then get back into bed..he should sit on a light pillow or even one of those 99 cent kids circle tube things would even work..so we'll see if we can get him in a chair for a bit tomorrow..that makes him happy because the kids' sacrament primary program is this sunday..

he worked ALL day..and still is at 930pm right now with his dad on the magazine..getting it put together..we're lucky to have help from our good friends an family right now!

Monday

well the weekend went well for jon..he had to still stay in bed though..he had asked the nurse sunday morning how long the sores would take to heal..she shockingly said 2 months?!?!? WHAT?!??! UGH he's not happy about that..
he has his magazine pretty much ready to go for printing..tying up some lose ends..so hes happy about that..
today he seems to be in a lot of burning pain..we're not sure whats causing the extra burning pain though..i think we need to have some men over here doing more exercises with him maybe? doing more streching? maybe nightly to see if his burning pain will go down? maybe since he's stuck in bed and not doing anything..its making it worse? if anyone is able to stop by around 830 to do that..that'd be WONDERFUL!

update..

whew- its been a while since ive updated!!! sorry!!...i havent had amanda..she's been out of town..so ive been on my own since tuesday...
things are well here..jons sores continue to heal and it should be no time before hes back into the swing of things..
my dad and his dad have REALLLLLY helped to put this magazine together!!! its wonderful!!! thanks guys!!! jons SUPER excited to see it at this point now!! he continues to finish it up and get it sent off..
today we got a call from collective in NEwport beach, ca..they wanted jon to do some work for them from work..BUMMER!! they were SOOO bummed to hear what happened to jon..jon thought about just outsoucing it..but nobody is as good as jon is for what type of work they needed done..otherwise he would have just done that...

today is a good day..the past few days have been for our family..just plugging along in our own new way of life..both of jons parents are here today and so that is always fun..

well back to work! just wanted to update real quick!!!

better each day..

well its really getting better by the day..his original sore looks SOOO much better..also the other 2 now..its crazy! they are more like a hole in his skin! this may be gross..so if your weak..dont read this! basically..its more like a boil maybe or a cyst type thing?? there was a hard mass and then it came to an opening..so essentially today the nurse was able to put a medical (qtip basically) into the hole which is the size of my pinky nail and have it go to the left- but it was TOTALLY under the skin!! does that make sense!!??! it was insane and quite and eye opener for me!!! that is where all the gunk is coming out of ..thats where it is draining thru..so the mass is for sure decreasing and draining out..so now that there is this good size whole basically in his skin..they kind of like "pack" in some stuff to seal up the hole and patch it up..they do that daily..anyway-JUST CRAZY!!!
he's doing okay..from 10pm-5am he's blazing hot..last nite i put a fan on him..i had to turn the AC down to 74..then at 5am-12pm he's FREEZING..
his bowels are back to working again - so thats always helpful as well!

he continues to stay in bed and work on his laptop getting the magazine article finished he's working on..between my dad and jons dad..they are helping with the actual magazine layout.. thanks guys!!!! i think my dad may come out tomorrow too..

well again thank you so much for your prayers..i hope he can get back into his chair and be sort of normal again..just last nite he said..i cant believe ive spend the past 4 months or so in my livingroom..its hard for me at nites mostly as usual..that is the time its quiet and i think about our past..and yet i somehow block it out cuz it ends up just making me sad and want to cry..probably not good to keep blocking out our past memories..but for right now..that seems to be what im doing..honestly right now i think it would be way too hard for me to see images of him walking..as i sit and type that sentence out im bawling like a baby..
ive realized its very easy to be strong when your life is going smoothly..its a big challenge to be strong when your daily life is like this..it makes you realize the REAL important of daily prayer and scripture reading and all those things we hear over and over again..i think maybe this is a lesson im learning..that right now i need to continue to do those things not because im ASKED to but because i HAVE/NEED to!

well girls are home from church- i need to wipe my eyes and put on the happy face!! its good every once in a while shed a tear- kind clears the air!

still improving..

jons sores are still improving..the nurses come daily still and ALL of our copays for nurses and PT/OT will be waived! YA!!!!!!!!!!!!! that helps SO MUCH!!

my dad is here today helping him with his magazine layout..its kind of a tedious job right now- so were VERY thankful!!

the girls will be heading off to church with a friend in my ward..so they are all taking their baths and being good for marbles..

JUST about 5 minutes ago..jon was able to move his ring finger on his right hand- how COOL is that!!! anyway - thought i'd share something positive in our long hard life..

Thanks for all the continued support and prayers- we're so lucky to be surrounded and encircled by so many lovely people!

getting better...

THANKFULLY it looks like his sores are getting better..the nurse came out again today to look at it and dress it..we all noticed improvement already- so THANKS for the extra prayers! they are working!!

jon stayed in bed all day yesterday and worked with his dad putting together the layout for his magazine..SUCH a HUGE help to him!! Robert will come out again on friday to help too..my dad might be able to come help with that too..

later that nite he was given a blessing by 2 of his friends..

i wanted to post a picture of jons old wheelchair and the new wheelchair and what seems to be my "parking lot" formal living room -what happened??

we're back...

well we got to the dr's at 3pm..waited till 4pm before they called our name..then waited a few minutes till the dr came in..then he said okay lets have a look at it..ill go find someone to help lift him up with me..we waited another HOUR and then he came back in with a guy, lifted him up..looked at it and said okay we'll start him on some antibiotics...GREAT 2 hours to hear that!??!?! anyway..he seems to think that mass is an infection from the pressure sores..he'll be on that agmunentin..however you spell it..so i'll go get that and get him started on that..then we'll keep dressing it daily now..so that is that...w'ell watch to see if it starts to decrease in size..

its now 6pm..i managed to find dinner for the kids..spaghettio's and cut up fresh fruit..they're in heaven!

headed to the dr's..

well we have an appt at 3pm for the doctors today..thankfully i had some help in finding someone last minute to be with my girls while we go..the nurse came and she was surprised at how much it had changed..it was SO small when she saw it last monday! she also addressed the large mass (about 2-3inches wide)he seems to have..its some sort of abcess..she said it needed to be seen immediatley..so i got on the phone and our doctor is going to see us at 3pm today..she didnt know if it was just a lot of discharge building up or what it was..
SO in about an hour we will leave to head to the dr's to have him look at it..they will try to figure out what it is...they may have to drain it..they may have to surgically do something to it..SO either of those things means jon will have a good sized open wound that i with the nurses will treat daily..the doctor will also most likely give him some sort of antibiotic..
again i will give an update once we return..

not good..

jons sores arent getting better..it looks like he has a total of 4..the original and three new ones..they are CONSTANTLY draining, so the dressings get soaked and do more harm then good it seems..the nurses tell me to keep it on for 3-5 days..but they are sooo moist! that cant be good! so i called the nurses again and told them whats going on..so they are coming out again today to look at it..i have also noticed a hard mass under one of jons sores..i noticed that it was a nickel-quarter size mass that was hard last week..it kind of feels like a pimple when its hard beneath the surface..so i thought maybe it might be that..then the pimple turned into a pressure sore and now the mass is like 3 inches long-REALLLY worried now! so the nurse is going to see what that is all about too..
man this is sooo hard!!! im very nervous right now just because i dont understand whats going on well enough..i will as usual get online and start researching and informing myself and jon..jon has NO IDEA how bad it is so today he asked me to take pictures..all i can say is the pictures made it look 100 times worse! so naturally it freaked him out..he's been in bed still and is getting closterphobic and he said this am on the verge of an emotional break down...he also is having bowel issues which makes him extra nervous too..
so today any extra prayers offered in his behalf would be so appreciated..i cant imagine being stuck in bed for over a week and THEN not being able to move on top of that and THEN having muscle spams that keep your muscles tight when you do move! he's feeling the pressure of his business and getting his magazine layout put together, getting the funds to produce/print the magazine, etc..its a lot to undertake right now..

i will update again once the nurse leaves..she will be here 1230-1pm time frame..oh also the wheelchair is ACTUALLY on its way to our house- amazing! OF COURSE they dont have his cushion seat- im so not surprised at this point..i told them to bring me the chair anyway..he cant even sit in the chair right now..the cushion will get here eventually..

i did make a call on our insurance..i got a packet in the mail and our current plan of 336 a month for me and jon with a 20 dollar copay EACH time we do anything..if dropped to 10 dollar copay jumps to 503 per month JUST for me and jon..YIKES! so i have a call with our agent to see what our options are or if we just have to bite the bullet on this one..we have till the end of november to get it all together..so we do have some time..thankfully our girls are all covered under another plan 100%..so thats good..

well back to work for me! jons massive amount of laundry is calling my name

update

today has been good..the nurse looked at jons sores..he's to be on a bunch of vitamins to help clear his skin up..so that's what we'll do..they will come out again in a few days..and keep an eye on it..he remains in bed still though..poor guy..he has his original one..then 3 more that have just started...
today jon seems to be either REALLLLLY hot or REALLLy cold..one part of his body will be burning, while the other part is freezing ice cold..he's pretty miserable he says with that going on..
the pt came to do an evaul..they were really impressed with how stretched his muscles were and that he wasnt tight..and that his feet arent like flaccid..that they have kept their shape..so that is good..if htey get bad it requires surgery to get them back to normal again..so thats good!! all in all she was impressed with jons condition..
she also said their organization is a nonprofit one..so she is going to work on getting them to waive our 20 dollar copay EACH time they come! right on!! jon was REALLLLLY happy with her -thats always helpful!!

Monday...

Well jon continued to stay in his bed all weekend, he watched all of conference saturday and sunday as well..he seems this am to have more sores..not good..so again we have a nurse coming out to address it..thankfully they are still very small..but still..jon says he's doing great despite his body falling apart!!

we also have in home physical therapy coming today at 130pm to get his body moving around again..that will help his muscle spasms to be doing some sort of moving..unfortunately with our insurance its costing us 20 PER visit for our copay..thats for the nurse visits and the PT visits..i just go a bill for 280 for all of his previous in home health visits..im working on getting new insurance so our copay's arent so high..we did it this way originally because neither jon nor i EVER went to the doctors before! then this had to happen and i think were going once a week it seems!!!

i got a call on his wheelchair and its ACTUALLY coming sometime this week..mid to late week..so that will be nice! he's tired of using this old wheelchair that doesnt even fit right...i think this wheelchair company needs some sort of complaint letter! he was evaluated in APril for the chair and here we sit in October..this was SUPPOSE to be a 6 week process..but alas his file was "sitting on someone's desk" thus the story of his life so far..i REALLY REALLLLY have to babysit EVERYONE to make sure things get done..or they would all sit..its sad that thats how the system works..good thing im somewhat organized and managed to get it all done somehow! I think Heavenly Father helped to keep my mind clear and organized to do all of this--if i think about it- its extremely overwhelming..but together with his help and all of your prayers ive gotten him all his care, kept up on all his bills, all of the house stuff, our business, social security, state disability, etc..WHEW! amazing!

i also wanted to take a minute and thank ALLLLL of those that have contributed to the Fund for jon..we will never know who donated nor how much..the donations were given privately and so that information is not seen by jon nor myself..so i just wanted to say--to those that have- we thank you!!!!! I believe in xmas time everyone will receive a more formal letter and thank you- i just wanted to make sure everyone knew that we constantly are thankful for your help in this regard..truly..thankful..

well today seems to be a busy day for me..so i better get busy!

Ready to be home...

Today is Thursday, we left for the canada trip at 450am on Wed morning. We made it to LAX by 6am. I dropped off jon and our luggage inside the terminal and then left to go find parking. I wanted to go to the long term parking that i usually go to, but with time constraints i opted for parking closer. I ended up getting confused and a little lost! I then went to a aiport parking place and waited and WAITED for the shuttle to come, i finally gave up and headed back towards the airport again..i ended up just parking in the 30 dollars a day spot! i QUICKLY ran inside and made it to jon, they had actually called my cell phone and said they were checking us on and trying to get jon up to the gate..when i got there at 640am, they had already decided that we were too late for our 650am flight..due to jon being in a wheelchair and the time it would take to get him loaded onto the plane- UGH!!! they said had jon had his passport-they would have taking him on in and waited for me at the gate..but i had jons passport so they couldnt get him even thru security..needless to say i was VERY frustrated that we had tried SOOOO hard..and this was our result..so they made arrangements for us to get the next flight FOUR HOURS later..UGH again..they let us go up into the VIP lounge upstairs to wait..around 10am i took jon to the bathroom and cath'd him and gave him meds so that we were all prepared to go on board the flight, at 1040am they loaded us onto the flight and we were able to get a set at the front of the place (still in coach) the other flight we were going to have to sit farther back..the seats were way comfier then delta!! that was a bonus- jon was able to lean forward to give himself his much needed releases...jon is still fighting a pressure sore so this was important..

we made it to our destination and contacted the service to pick us up and take us to the hotel, we checked into our hotel easily and made it to our room. This hotel is one of the NICEST hotel's we've ever been in! when we told people at the airport who were helping us with jon and luggage that we were staying at the royal york- you should have seen their faces! not many people stay at the york! you guys must be famous or something!!! when we told them that actually their government was paying for the both of us for flights, hotel and food-they laughed at the thought of their tax money going towards us! but then they realized, hey if it brings more money to their economy to have businesses outsourcing to canada-money well spent..

we got settled in for the nite and were STARVING as the flight DIDNT EVEN SERVE LUNCH!! its a 5 hour flight and NO FOOD?!?! we had to BUY the food! we got some lousy cup of noodles soup for jon and me a really sorry looking small small pizza..so we ordered from a pub downstairs and it was VERY GOOD! we then crashed as we were soooo tired of being up since 4am that day and having little to eat and knowing we had to be up quite early the next day for this conference..

at 630am i got up and got jon ready for the day and myself, we then headed downstairs by 720am to meet with the group to head over to another location (which we walked to -it was short) the area we are at is downtown toronto and you feel like you are in New York-the word is this spot is the wall street of toronto-and it looked it! i think jon was the ONLY person NOT in a suit!! he was dressed in nice khakis, a button up dark green olive shirt and a nice light brown sweater- with his beanie!

we made it into the bank where the conference was being held-on the 40th floor and had a little breakfast and began the conference..this conference is different opportunities of outsourcing and the canadian government wanted to tell us why it was good to come here, mainly they have HUGE tax benefits and all sorts of things to take advantage of..we did not know any of this so this was great! we broke for lunch and we decided to come back to the hotel and rest..it was a LONG time sitting for jon..and he was getting painful and freezing..our contact guy wanted jon to speak about the gaming industry and his business to everyone else that were there- and these were HIGH PROFILE very rich individuals who have been in their different businesses for years-a little intimidating!! we broke for lunch at 130 and decided to skip the next two speakers and head back at 230 when our contact person was having jon speak..it was VERY good we did that- jon got a good nap in and felt more refreshed and not so painful and freezing..

jon got up and spoke to the group-they were pretty alarmed and amazed that the gaming industry is actually a 12Billion dollar industry and now makes MORE money then hollywood does..then jon spoke about his business and the others found it interesting..

after that we spoke heavily with our contact person and another person about business prospects..and they kept asking what can we do to expose ourselves and this information to the gaming industry-so FINALLY i said, well first you can post and article in our magazine which goes directly to exec's of the industry..which they said YES thats what we were thinking, we'd like to work with your company in getting us out there, and they realized that having their schools advertize and other game companies that are already here to advertize in our magazine would be good too..

so at 4pm we headed back to our room - tonite there was a very nice dinner at the top roof of the westin ANOTHER beautiful hotel with a 360 view of all of toronto, but we decided that jon just needed to rest more and not push himself..so we opted out of going..we were SO tired and came back and slept from 430pm-9!!!

so now its 9pm, guess we need to figure out if were going to eat dinner or just go back to bed- i knew that alot of people wanted to know how things were going so i plugged the laptop in to inform everyone...jon is hanging in there..he's not doing terrific, so any prayers woudl be So helpful! his pressure sore is still there, it seems to be doing okay..he MIGHT be starting another one-im keeping watch over it though..he seems to be so very cold too..but once he's rested in bed and sleeping..he warms up...

our flight is tomorrow at 230pm..so we'll most likely leave here by 12noon..the airport is less then 30 minutes to drive there..then we land into lax at 5pm YUCK! so we have a long ride home as well..jon said earlier..i just want to be home now..while this hotel and everything has been very nice..you certainly miss the comforts of home and your family and your children..this kind of thing can get pretty lonely i imagine!

well thats the update from here-i felt bad for jon when he made the comment to me..i just want to be normal..its very different to all of a sudden be confined so much, in some pain and freezing..he feels bad that were both sort of stuck in this hotel room- but quite honestly i dont mind at all!! he feels bad that we cant walk around and see toronto..but i told him we have the rest of our life- we dont need to see the world today!! i imagine as time goes by with this situation, he'll improve and "feel normal" once again..we're still pretty early in the recovery process and the fact that he can even do the couple of big trips he has is amazing in itself!

well i guess my novel is done! i better go figure out if were going to eat or just go back to sleep!!

Sunday/Monday

Jon went to sacrament meeting yesterday and then came home and spent the rest of the day resting in bed..

today is the same..the nurse came out and we can all see that the sore is healing..i will dress the sore on thursday or friday morning and then the nurse will come out again on monday to access it..but atleast its looking better!!! its VERY tiny - the size of a pea..

otherwise he's just in bed working on his laptop..

the plan is still to go ahead and head for Canada, im worried because it will be 60-70 degrees when we are there and raining it looks like UGH! i will need to grab a beanie for jon and a zip up jacket for him as well..i think we'll be okay..we'll be in hotels most of the time for meetings and dinners and what not..its just going in and out of the car from the airport to the hotel and back again..

The nurse came..

Today the nurse came and did a treatment..i watched so that i could do it myself..not too hard..they gave me the supplies i needed so that is helpful!
she said they will have someone come out on monday to do a follow up and do another treatment, and then i can do it in 3-4 more days after that..
she said it was small thankfully and it should heal..he could go into his wheelchair for 2 hours then back in bed..back and forth like that..

she also said we could get him going on home physical therapy..that would be TONS easier then taking him over to west coast spine here in riverside..its a new home health agency..so maybe they will be better about things..so she is contacting our doctor to get a referral for that..we told her were waiting to get him into rancho los amigos and that we were going to take him back to west coast..but if we could have home health come instead..that'd be easier..so we'll see what happens with that!

this is a picture of becca playing with dad- SO CUTE! she's loving that she can just hang with dad...

Pressure Sore..

Well Jons pressure sore is still bad..ive been WAITING for the home health nurse to atleast call to make an appt with jon to do a skin treatment..no calls yet..i called his dr's office and they called to see what was taking so long..of course the dr's office said the other office would "call them back" but no call backs have been made..so AS USUAL i have to be PROACTIVE and take matters into my own hands...so i called the other office myself..and have made it all the way thru the nursing scheduler and then come to find out they arent planning on coming till Sunday!?? what on earth!?!? sunday!!?? So i have her on the phone now and said he has a stage 2 pressure sore and waiting till Sunday to do a woundcare treatment is probably not a good idea!! so im on hold..we'll see what the outcome will be..okay she said they just had a "cancellation" for tomorrow.. FIGURES! so a nurse will call between 8-10am to pick a time that day..okay on to the next thing!!

I feel bad that he has to stay in bed ALL day again..

Well my 2 older girls have dental appts at 2pm today..so i'll be around the corner with them doing that while becca is napping and anna will just hang out with jon..

On a positive note- jon is now able to feel on his left foot which is amazing and he can feel on parts of his left leg- he has had NO feeling whatsoever on his left leg before so this is quite encouraging!

Back from the dr's..

well we made it to the doctors thanks to my parents for coming to help me with the girls - im so lucky to have help like that! my mom said they were SO good! YA!! makes me happy!! marbles all around for them!!!

we did a UTI test- and the first test showed no UTI but they will do a culture for sure, we also did a blood lab thing so the dr can have a baseline on his white blood cells etc.., then they transferred him onto a table to see his pressure sore, he gave us a prescription for silverderne 1% cream..i have 30 more minutes till i need to pick it up..then he'll just try to stay off his wheelchair as much as he can..which is no fun to not move AND be stuck in bed!!! we also will have a home health nurse come in to do a skin treatment..then we'll keep an eye on it and go from there..

Off to the doctors..

Jon indeed has what I would classify as a Stage 2 pressure sore, so we are headed to the doctors today at 4pm. I will need to find someone to stay here with all the girls while we go.
While there I imagine they'll pull a urine sample to test for a UTI..

He stayed in his bed all day and we rotated him and used special ointment, but its still there and these can go quickly to a big complication..so thats why were headed to the doctors..

Ill keep you posted as to what the doctor says or does..

Monday..

Today jon stayed in bed all day..he seems to have a pressure sore that we are keeping watch on..those things turn bad FAST..so were trying to be careful..
he spent most of the day on his computer..

his spasms are pretty strong throughout the day and make his entire body tighten up..especially as of late..his chest..which makes him nervous that he cant breathe..so he has to concentrate to breath slowly and keep his mind on track..

other then that he's hanging in there..i seem to think he has another UTI..im going to go tomorrow to get sample urine cups to get it tested..its pretty strong smelling and thats how i can tell he has one..so we'll see..

as for me- im just SO TIRED!!! im getting tired of feeling like ive been to dland all day everyday..the bottoms of my feet, the backs of my knees..i imagine once winter gets here and i wear some athletic shoes..maybe i wont be so tired- im sure the fact that im wearing flip flops isnt helping!!! i need to look into those special sandals..kristen or melissa which ones were those!!?!?!?

oh well..life must go on..tired or not! tonite im off for my monday run..1.4 walk followed by a 2mile run..talk about tired!

Sunday..

Today is Sunday..Jon was asked to teach Elders Quorum today..he spent ALL DAY saturday preparing for it..he did a good lesson though today..(kristen dont worry he'll still do Bishops Youth Fireside for you!)
Today my parents called and are bringing up dinner for us- FABULOUS!!! they'll be here about 3 or 4pm today..then at 7pm jon is going to the Stake Priesthood Meeting..

Last nite we had a family party..i rented the Wild and we ate dinner on the floor and had ice cream sundae's-it was nice to just be with the girls and enjoy them..

It looks like Jon and i will be flying out to Canada for business sept 27-29th..i will need to find help for the kids while we are gone..maybe kevin and bonnie-if you guys are reading this! i may call you!!

Well time for me to go rest..i only slept from 530-745..becca was up most of the nite for some reason..

we have an appt

we have an appt-but its NOT UNTIL nov. 6th at 1pm! RHGHG..so i think at this point we'll send him back to west coast spine until nov. 6th..that was the earliest eval appt they had available-so we took it..

fast trak pay option

I received a call today from financing and they said we could do the fast trak option with them..so our evaulation (which can be scheduled oct 1st-december) will instead of 900 for the visit be 50% off..thats a ton! every bit helps! so this is good news..
so they will do the evaulation and then AGAIN decide or approve if they want jon to come to their facility--so AGAIN were going to REALLY need prayers!!!!
if they do except him into the program..then we can again to fast trak program and all his therapies will be 50% down..again good news..we are looking into switching our insurance for a little extra each month for a PPO plan where we can go wherever we want and we'll see if he can have the insurance pay for his insurance instead of so much out of pocket for us..
so as you can see- lots to still pray about!

approval process

okay so here is the lastest..jon is for sure approved..the doctor wants to have a consultation with jon..he just wanted to see his discharge papers..so our doctor will have that by friday and then on monday the other doctor can review it and set us up to meet with him..either way..the doctor isnt in the office except for mondays to review things..so we have to wait till then anyway..so keep your prayers going that this all works out!!
then we will discuss the financing part of it..they didnt realize we had HMO insurance plan..they thought it was a PPO..so we'll see how this plays out..im SO thankful we had the fundraiser to help raise funds to help pay for this if it all works out!! JUST the consultation is 900!! so you can see how thankful we are!!!
jon is doing well..he got some things done with his dad yesterday..just plugging along..amanda still continues to come 4 days a week and were SO thankful!! i had to laugh..everyone knows i dont like toes- ESPECIALLY mens toes..so while i was eating breakfast..amanda was cleaning jons feet (jons in the livingroom on his bed) and she says "wow jon-talk about crusty toes look at this!" holding up a washrag with crusties on it- GROSS!!!!!!!!! IM EATING BREAKFAST!!!!! we all laughed..it was pretty funny!!
jon and i might venture out to OC today while girls are in school and anna is in preschool..we need to pick up some things we got printed at robert's law office and we need to drop off some boxes of peaches for my mom that she had ordered..we'll see if we make it out today or not..

i am in need-if anyone is still reading this..on wed's from 7-8pm to come help get my rachel, anna and becca showered and into bed..sarah has practice CLEAR down by the stake center mondays and wednesdays 7-8pm..i decided i cant do both nites being that its fhe on monday and thats more important then a soccer practice..so im willing to go wed's with her..i have to leave here around 640pm and then i dont get home till 820..so if anyone is available to come wed's just from 7-8 that would be IMMENSELY helpful to us right now..its too hard on rachel to get herself AND the two little girls ready for bed and showered without some guidance..email me if this is something anyone is available to do!!! thank you!

APPROVED! thank you!!

Well the prayers worked! the doctor reviewed and he for sure wants a consultation with jon!! YA!!! he did also want to request the discharge paperwork from our doctor- so they left a message with our doctor to get that..i will call to make sure that gets faxed over...

She will call me once they get the discharge papers and we'll go from there- so PLEASE keep praying that everything works out and is followed thru!! we'd hate for a hiccup now!!!

PRAYERS!!

Tonite and today we ask that you pray for jon that the doctor who is reviewing jons file at Rancho Los Amigos will have his heart softened and feel the need to have Jon come to their rehab..its CRUCIAL that this step happens..

Jon is doing well..he's having some skin irritations but they have cleared up now since he's stayed in his bed for 2 days..that has helped..he's been eating well and is ready for the week to start..

The wheelchair should arrive here in another 1-2 weeks is the plan..it will be GREAT for jon to have a chair customed for him!!

The girls are doing great..rachel has a hamster and it raced in the PetCo hamster race..it was SMOKING all the other hamsters in the practice round..but it didnt win in the actual race..actually it kinda did..the other hamster made it to the finish line but TECHNICALLY it NEVER CROSSED the line like rachels did..oh well..it was a good learning experience for her and there will be another race!
Sarah is doing good too..ive got her signed up for soccer and due to Jons condition they gave Sarah a scholarship to play! i was stunned and totally taken back!! Im doing all I can to keep their lives how it use to be and not take away everything from them..so we were just so thankful!! sadly though..her practices are monday and wednesday NITES 7-8pm!! she most likely wont be going to much of them..if any..we're not thrilled about her practicing CLEAR down by the stake center 2 nites a week that late at nite for 6 year olds!!!
Anna is doing well too..she's still dressing up as a princess waiting for prince charming to come marry her..she's THRILLED that becca is her new friend now and will play with her and EVEN wear the princess dress up dresses!!! They remind me of how rachel and sarah played when they were 4 and 2...
The older 2 girls continue to be SUCH great helpers to me..and im so thankful..i couldnt do any of this without them!!

As for myself..ive been a little sad and down..ive just REALLY been missing my old jon and our old life..and being a single parent is hard and long for me right now..so ive been struggling a little..tonite i just cried near jons head because thats all i could do..jon just kept saying..im so sorry..it kills me to see you like this..anyway..i think one of these days ill just have to put jon in our bed upstairs to feel somewhat normal for once!! its very hard to go into separate rooms to sleep..i imagine jon walking upstairs, hearing his ankle crack, closing the door and locking it, brushing his teeth, changing his clothes his usual nightly routine..then i glance up and realize..im just in a big bed by myself..i just get sad..
i try to just think..when we get to the other side..i cant imagine the reward or blessing rather that is awaiting for us if we continue to endure..endure means SO MUCH more then it ever has before..

well its nearly 1130pm now..i should go soak my eyes and get some sleep! please pray for jon that again he'll be approved by the doctor to join rehab..

Thursday..

Well the referral was fINALLY faxed yesterday and is on the doctors desk to be reviewed on Monday when he returns back to Ranch Los Amigos. He will review it and give an approval for whether or not Jon can come to their facility for therapy. Once he approves it they will contact me and then contact our insurance to see if they will cover it. Then we go from there..so HOPEFULLY by next week we'll know what is going on..

I contacted the doctor to see what his results were with all those rock like crystal things in his cath - but OF COURSE-they "couldnt get enough of it to test it"..oh well..we're using a different cath and its working..its not an indwelling one..its just a regular one that i hook up to a bag..jon LOVES that there is no bubble and that its smaller..

I have also contacted the wheelchair company and it looks like its at the place where they hook on his "E-Motion" wheels onto it..so it should be ready soon..i left a message to get exactness on that..but ATLEAST its FINALLY moving forward!! UGH!

Jon seems to be doing well-ive got his business phone working so he can answer his own calls now and he has a mic he can talk into with an earpiece..we're still anxiously awaiting some companies to advertise in his magazine..scott should be here shortly to help him with some other business things..

Jon seems to be doing good- he has a hard time in his bed..were not sure if its his air mattress or what..once he's out of his bed he seems TONS better though- so thats good! last nite he had another wierd dream..he was asking why "nobody would pull the plug" and saying "he was tired of being phantomized!!" what on earth?!?!? he kept asking me "to just pull the plug"..i told him "i dont want to because your going to be okay"..it seemed to calm him down..anyway CRAZY!!

well scotts here- so off to work we go!

Monday-Labor Day..

Well today is Monday Labor Day- its been a while since I've written. Not much new is happening. We got our Sales worked out and things mailed out - phone calls will soon be made- so were excited about the progress being made in that area. Keep your fingers crossed!!

Health wise jon seems to be doing a little better. He's not so nauseated like he was before. He does infact have a UTI and so he just finished taking all of his meds for that. So i will need to take another sample in to make sure its cleared up. His indwelling cath seemed to be COMPLETELY clogged with crystal like substance throughout the entire tub- so he wasnt draining at nite leading him to dysreflexia. We took it in to have a sample taken to figure out what that was as well.

The referral has been sent over to Rancho Los Amigos so we are waiting word to see if Jon can get an evaluation which alone cost 900! crazy!! The insurance did infact deny it which we figured was going to happen anyway.

This week Im hoping to clear out the rest of the big garage and get the 3rd car garage stuff into the big garage. I managed to clean half of it myself. I have it pretty organized to begin with so Im in good shape. I have someone who will be able to help me get that finished so thats exciting! We're getting it ready to put in gym equipment for jon so he can be working out everday vs just 3 times a week.

Im not sure what our plans are today- nothing really. Just keeping it low key.

The girls go back to school tomorrow and Anna starts preschool-so that will be nice!

Well thats about it from us- enjoy your labor day!

Thursday..

Yesterday was good for jon - he got a lot done with his dad..were working on sending out media kits for advertising in his magazine..CROSS your fingers!

Today he is the coldest he's ever been and is worried about how the rest of the day is going to go..he's really tired of being SO cold then SO hot all the time!

The doctor got the results back from the lab about his UTI..she was to review it yesterday- so i'll need to call and find out what she said..

The referral on his PT is on its way to Rancho Los Amigos..so we'll follow up on that as well..

The wheelchair has been painted and is getting all the extra stuff put on it then it will be sent to get the EMotion tires put on it..

Well back to work!

More fun photos..

here are some more fun photos of the girls eating their cookies i made them, and of our fhe we did..

Jon had a good day yesterday- today we are working together on his business while the older 2 girls are in school and the younger 2 are napping..

First Day of School 2006

YA the first day of school- they looked great! i cant get the pictures to post so i'll try again later..

I called on Jons wheelchair-i had to leave a message...

I called on the referral and it was sent to Utilization Management and tomorrow..on tuesdays..all the doctors review his case to see if its medically neccessary for him to have this other therapy..we are having his physical therapy now send a letter from them stating that they do not have any handicaped equipment at their location..so every little bit helps..so they are doing this first to see if the insurance will actually pay for it =then if not they'll fax the referal over to Rancho Los Amigos and we'll go from there..

quiet saturday and sunday..

saturday jon pretty much slept all day till 415pm..he must have needed it...we then went to the mcgee's for a bbq for the end of the summer..it was fun and the girls enjoyed swimming...

im VERY happy that school starts tomorrow and its the start of our "new normal"..we'll see how it goes..amanda will come mondays and fridays at 8-11am and then tuesdays and thursdays 7-10am and then i'll do wednesdays..which is WAY better then friday, saturday, sunday and monday- im SO burnt by monday morning..so this should be good- i PRAY she'll stay with us!!!

Jon has been taking his extra baclofen..it may take a few days for it to kick in..we'll keep watching and see how it goes..i will call tomorrow on that referral to see where we are on that as well..i should hear back tomorrow to see just how bad his UTI is..he's not nauseated anymore so that is good...

Good Day..

Today was a good day..i got up at 730am to prepare us to go to the Temple..our good friend Russell was receiving his endowments and so we with some close friends went to support him..we managed to make it on time and everything went smoothly for jon..we then went to claim jumper for lunch and we've all just been SOOOO tired since we all got back home!!

Jons been able to go 5 days now without his waist belt thing..so that wonderful! I forgot to mention that yesterday he put on his OWN shirt all by himself!! thats awesome too!!

Sadly he's been having some REALLY bad muscle spasms that constrict his breathing and just tighten every muscle in his body..they are quite intense...so he's thinking he may go up to 20mg of baclofen..he's at 15mg's now..

Well its 9pm..the girls are all around him in his hospital bed and he's loving every minute of it..they are watching spongebob - lovely i know!

wierd nite..

ill explain about the wierd nite in a minute..i got a call from the doctor this am and they said that his urine wasnt sterile enough so i'll have to drive over there to pick up a cup and then transfer it here at home to take it back to teh doctors...good thing the doctor is only 7 minutes away! SO looks like i'll be doing that today!!

jons fever did break, but then at nite it went back to 101 again..he did take his UTI med as well..CIPRO is the name of it..i got him into bed about 10pm and 1030 went upstairs..at 330am i came down to do my usual..he was not himself..i wasnt sure if he was still in a dream or if it was from the UTI medication...he was yelling at me..he kept asking me where i was taking him!! i was just there to rotate him..i stayed super calm as if he was just sleeping..but then he felt like i was ignoring him!! which made him more mad..he kept saying..i cant just stay like this-icant just sit like this!! anyway - it was all i could do to not cry..i wanted to call robert..but i stuck thru it and just did what i needed to do..i felt like he had kind of come out of what his dream was..anyway -it was wierd..a little frightening..and im PRAYING it was just a dream trance kinda thing..and NOT a side affect of the medication!! he takes it at 10pm and 9am.. so we'll see how the day goes..

this am he apologized for last nite..he said he was in a trance or soemthing..so its nice to know he was aware of it!

well its thursday- which means clean the whole downstairs day..so back to work i go!

oh ps the sleeping is going well..i get to bed by 1030pm..and then ive found that if i wake at 330am i can get back to sleep easier..but if i get up at 4am..i toss and turn for 1.5 hours before i can get back to sleep again..

amanda will start next week coming from 7am-10am..so that will help jon to have more time to do business - YA!

for sure UTI..

well i took jons sample down to the doctors and right away they could tell he has a UTI..they are now taking it down to the lab for a culture to see just how bad it is..

good thing is his fever is broke..and he's eating more..and staying awake more..

another good note is the prayers regarding his stomach muscles are working! he's gone 2 days now with NO lap belt- that rainbow looking thing- so thats great news!!

possible UTI..

Well i feel like jon does have a possible UTI..i called the doctor this am..i got the nurse..i told her i feel like he has a UTI, he has a low grade fever, nauseated and it has a strong odor..she said that the doctor has no more availabilities to see patients till next week..i said we'll i'd like to just bring in a urine sample vs bringing him in..she said to just take him to Urgent Care..i said im not really wanting to load him all up and into Urgent care just to pee in a cup!! So i asked her to ask the doctor what she feels is best to do..
WOULDNT ya know it..she said for me to just bring in a urine sample- YA!! so i'll do that around 12-1pm and then they will test it and prescribe medication if it is and then take it down to the lab for a culture..so we'll see what happens with that..

last nite at 10pm when i got him all ready for bed..he wanted something else to eat..so i gave him a pepperoni pizza hot pocket..hit the spot!!

still low temp..

jon still seems to have a low grade fever..around 100...he's feeling nauseated still today too... he did have breakfast and a burrito for lunch and im giving him more chicken soup for dinner again..
im going to call our doctor to see if i can just give them a urine sample to test his urine to see if infact he does have a strong UTI or something..rather then making such a HUGE effort to get him to the doctors only to have him pee in a cup!

i made contact with the referral for the good rehab place..FINALLY something is getting done! the doctor is signing the referral tomorrow and then they are faxing it directly over to the ranch los amigos..from there they will contact our insurance to verify no coverage for rehab there..and then they will contact me to do an evaluation of jon and go over financing..

we request that a special prayer be made on jons behalf..one that we figure out why the low temps and nausea and two that he gets accepted into the rehab!!

my next big project once school starts next week is to go thru our big garage and throw away ANYTHING and almost EVERYTHING i havent used in the last year..if anyone ahs any type of trailer or can some home help to haul all the stuff we arent using to the dump..please contact me!!! once i get the big garage cleared and cleaned out..i can work on clearing and cleaning the small garage out so we can work on getting work out equipment for jon in there to make that part of his day..

well back to work!

Low tempature....

Today Jon hasnt been feeling well at all..he's had a low grade fever for about 3 days now..and today he didnt eat anything all day but a bowl of cereal and half a piece of bread..and has felt like he's wanted to throw up..so i dont know if he has ANOTHER UTI or what the deal is..he's just been hunched over in his wheelchair asleep most of the day..
we did manage to get a couple of business emails out..

well its already 7pm and i need to keep the family moving!

weekend..

the weekend has been good..my dad came over and fixed the pool filter/pump for us- THANKS DAD- you da man!!!

jon has been SUPER cold for 5 minutes then SUPER hot for 5 minutes..he seems to have a low grade fever..so im watchign that..he's resting now..
he's been having to be cath'd a LOT and he has WAY more then normal output- im not sure if he's just drinking a ton of more water or what the deal is..we'll just keep watching him..he was telling me last nite..i miss being able to lay by the fire and i REALLY miss just standing in the shower..those were two of his favorite things to do in life! i never really know what to say when he says those things..i just acknowledge them..but never feel like i have anything else to say..i cant imagine what its like to be soooooo incredibly limited on what you can and cannot do...

the girls have been wonderful- especially sarah - SO helpful and SO kind-im so thankful the girls are loving to one another- especially right now!!

my new normal..

Christina's new normal..

okay so here is my daily schedule..its just nice to have it down somewhere!
this is when school will start on august 28th..

7am-caretaker amanda arrives and gets to work with jon
730am me and the girls wake and get ready for the day
745am we start breakfast and read scriptures
8am we have family prayer and out the door the girls go!
8-9am i hang with becca and do emails/blog
9am take anna to preschool on tuesdays and thursdays
9am-12pm i clean whole upstairs on tuesdays/whole downstairs on thursdays
10am-amanda leaves and jon is ready for the day and over to his laptop
12pm lunch for family/hand with becca and anna/emails/blog
1pm becca down for nap
1-3pm "project time" or errand(i clean out a closet or drawers or garage,etc)
3pm big girls get home and get snack and start homework
4pm finish homework/give jon meds/wake up becca
5pm start making dinner
6pm family eats dinner
630 family clears table, mom rinses dishes, big girls load and unload
7pm buddy system (big girls take younger girls to bath, jammies on, teeth brushed) mommy sweeps the floor and picks up a bit from the day
730pm monday fhe
8pm family reading time (their favorite books)
815pm family prayer/bedtime
830pm emails/blog
9pm transfer jon into bed
10pm go to bed - HOPEFULLY!!

i find that when i write it all down like this and tell the girls..they know what to expect and it seems to run SOO much smoother- cuz they look a the clock and go - oh ya its 6pm that means we have to eat, or its 8pm that means reading time etc...

Thursday afternoon..

today has been good..scott is here working with jon..

i called on the pool (bogner) who built it..our problem is it is running on really high pressure..so were going to take the things out of the filter and run it to see if the pressure dropped..we've already changed the dicatumous earth twice in a short time..so we know its not that..(thanks for the tip sharla)..its more of the filter system..so we'll see what happens..but atleast its not green -which was due to our not having enough chlorine going into it...OOPS!!

i got a few errands done today.. i paid rachel 3 dollars to babysit anna for me and put becca down for a nap and i took sarah with me..it worked out good..

well ive got dinner going in the oven -

Thursday..

Well today is thursday - i didnt get to write because jon and his dad had 3 computers ALL to themselves!!!

Yesterday was good - robert got here about 130pm and i did my usual lunch run to carls jr- YUM!! i was starving!!!

I managed to make our green pool back to a blue pool with the chemicals..it seems like our pump/filter isnt quite working so i'll have to call bogner to have them come out and check on it- gotta love LIFETIME warranty!!

Jon worked with his dad most of the day - i got out to run with kristen..

today scott is coming out and they will work on getting ad's and articles for his new magazine..his online one needs to be ready for september and then anotehr in october then he'll take that information for his november print issue...we need to start pulling in some money for the business..so were working on trying to find a sales guy that we can pay NICE commission to get some ad's in..

Amanda is still WONDERFUL! and were both SOOO happy!! she's going to start going back to school when her boys do..she has 3 ages 9, 5 and 18 months...so she'll start coming monday -friday 7am-10am...so that will be nice!! im always so worried she'll stop coming!! but she says she likes working the 3 hours for the money we are paying - its WAY better then working 8-10 hours for lesss money..and she can be home more with her boys and get more schooling in - SO THANK YOU For your prayers in this- this is TRULY a blessing!!!!!

he NAILS it!!

Let start from the beginning..yesterday we had planned to leave the house by 530 or 6pm...robert and scott came and decided to continue working on jons slides and speech more to finalize it out..mark and bruce came over around 730pm to start hooking up the trail wheelchair lift thing on the denali..3 HOURS later and 3 FUSES later- we figured it out and got it working..the lift was leaning a little towards the street and it made us nervous- so we decided to go for a test drive..i got my truck up to 50 mph and figured "well it didnt fall off so were good!"
by 11pm we got jon loaded and away we went to the Marriot in LA..we FINALLY checked in about 1am and we got to sleep at 130am..YA LATE NITE!!! but we were pumped so it didnt matter...i woke at 6am to do the 4am usual rotation, meds and cath..robert and scott got up at 7am to start their showers and then headed down at 730am to set up our exhibit table which was due to be completed by 8am! YIKES! but they did it and came back to our room which i had already taken my shower and got myself and most of jon ready for the day..we transferred jon into the power chair- i ordered us all breakfast which was REALLY good and robert shaved jon real quick..
by 9am we headed down to begin the event...it is FREEZINGGGGGGGGGGG HERE!!!!!!!! poor jon is soooooooooooooooooooooooooooo cold!!! chad and kelly - were using the big black blanket you bought him..and he's still freezing..
the first speaker went..then it was jons turn..they announce jon hales..and then everyone does their applaud-- imagine the look on their faces when they just see ME walk up there- fiddle with the computer- arrange some papers- ALL this while WAITING for jon to roll on up from clear in the back to the front-- it was quite funny - i felt like i needed to say- im not jon - he's coming though!!
jon makes it to the front of the stage and he started off his speech with..well when i started my business about a year ago- i wanted to make sure i REALLY knew the ins and outs of outsourcing..so i decided to break my neck..and now i can say i outsource just about EVERYTHING in my life..so when i say i understand- i really mean it- it got a ROARING laugh and a huge applause- it was GREAT- we have to credit scott - jons brother with that GENIUS opening!!!!!!!! it was JUST perfect!!!
Jon proceeded to give his speech and i managed to follow along and push the right buttons on the laptop for jons slide..
his speech went GREAT -he did a great job and im SOOOOO incredibly proud of him - when he was done it was ALL i could do to NOT CRY!!!!!! he spoke the FULL 45 minutes- it was perfect!!
after his speech there was a small break and many of his collegues were coming up and giving him compliments..it was just great..its been like that all day today..oh i also remember that all the attendees were making notes like CRAZY while jon was speaking - he had great slides that everyone was able to take notes off of- so many people wanted jons entire script! we told them that actually everyones script is on the gdcfocus.com website- they were thrilled..

after it was lunch time where we got to eat in this swanky place at the hotel with the other speakers...it was pretty neat being around some serious hotshots..jon and i both at the miso salmon..

its now almost 2pm and the conference will continue to go on till 5pm then more people want to have "meetings" with jon..so should be interesting..

well im just SO thankful for having ALL of you on this journey with us and to see where and how we ended up - this is just awesome and were thankful that youve continued to pray and fast and think of us throughout the day - what a wonderful thing- we're so blessed- thank you!

Saturday and Sunday

Saturday was a good day..the girls were pretty good all day and stayed mostly quiet..jon kept working on his speech..i put him into his bed at 7pm and he continued working on his speech-
we ate captain crunch for dinner - jon had 3 bowls of it!!

Sunday is good so far..we woke up at 815 late to get ready for church- but with the help of the Kennedy's who always come over to help we made it to church not terribly late..
its now 2pm..my friends invited the 2 older girls over for lunch and a church movie..so nice!!
i made my list of things to pack- and of course its forever long..but i can get it done now that i have a list to work off of!!

Jon is resting after his 2 bowls of spaghettios- i know so healthy! captain crunch and spaghettios- he's easy to please!! im going to start packing everything up and get it into the car..Robert, Sandra and Scott will be here shortly to help..Sandra will stay here with the girls and then head down to OC for the day while the painter finishes up painting the trim on the flooring..then bring them back and meet us here late tomorrow nite..OR maybe shell want to keep them at her house over nite and then my mom can bring them back for me on tuesday afternoon...
I think after dinner we'll head down to LA to the marriott where the conference is and check into the hotel room and prepare some more..

PLEASE pray super hard that jons speech goes well- that he's happy with it..that he'll be guided by the Spirit and be alert and awake and physically able to talk for 45 minutes STRAIGHT!! Last nite he said this would have taken me 3 days to do..i cant BELIEVE its taken me 6 weeks!! His presentation is not about his company..that would have made things MUCH easier- but its actually on the Geography of Outsourcing..so he's had to do alot of research and get LOTSSSS of help from family to get him thru this- and for that we are SOOOOO incredibly thankful!!!! we have the magazine FINALLY printed and ready to display and hand out at the conference as well as all the ones that got mailed out-- writing that article also took jon 6 weeks to complete..but with again help from the family- he got it done..and JUST in time too!
The conference starts at 9am to 5pm..with a lunch at 12pm with the other speakers..then there are lots of people that want to meet with jon after 5pm there to discuss business..so that will be interesting! im excited to see jon in his "element" or in "his game"..its been along time since ive seen jon the way he use to be..this has been a LONG hard road already..but he's working so hard and come so far..im excited to see him come alive as he gets back into things like this!

Well again-pray for him and wish us luck!

Friday..

Well today is friday now..scott stayed till about 10pm last nite..they got a lot done i think..jon got to bed around 11am..and i got to bed around 1230ish..
It is now 2pm and Jon is working hard at his computer still trying to write out his speech for THIS monday..i told sandra that we need to keep the girls out of the house all day..so either she or i could take them to the movies..so now they are off watching that new barnyard movie and becca is napping..i will go start laundry and get some things done..like call on his wheelchair AGAIN! RHGHGHG

Thursday..

Jon is doing great today - he seems SO alive now! its so nice!!! im hoping the BP medicine is finally working for him..his feet seem to get SOOOOO bloated..so today we kept them up ALL day long and it helped immensley..
he's just been working ALL day with scott on his speech..its coming along i think!
its now 10pm and they are still working..
he continues to have MAJOR tingling in his right foot..like his foot fell asleep kind of feeling..it will be interseting to see what comes of it!!

OH PS: if ANYONE knows how to hook up the trailer lift for a power wheelchair onto my truck PLEASE CALL ME!! we need to figure it out before sunday- were heading to LA that evening to stay at the marriott where his presentation will be..THANKS!

Thursday..

Jon is doing great today - he seems SO alive now! its so nice!!! im hoping the BP medicine is finally working for him..his feet seem to get SOOOOO bloated..so today we kept them up ALL day long and it helped immensley..
he's just been working ALL day with scott on his speech..its coming along i think!
its now 10pm and they are still working..
he continues to have MAJOR tingling in his right foot..like his foot fell asleep kind of feeling..it will be interseting to see what comes of it!!

wednesday

today has been NICE and QUIET!! jon did well thru the nite last nite..he's still VERY cold and his poor feet are SO swollen!! poor guy!! he's crashed out in his pressure release position taking a nap before dinner..robert is working on the computer for his business..becca is waking from her nap, and the other three girls are with erin thompson at the beach with HER 3 other kids! my girls LOVE erin!!

i had a friend from Huntington Beach drive ALL the way out here to take me to lunch -it was a lot of fun! thanks rebecca!!

Ive just been busy cleaning the wood floors, washing the back sliding door, doing laundry..etc etc..amanda was great again today!! im so thankful!!!!!

meds..

this is a picture of what jon takes DAILY- no that is not a marijuana plant on the side.. i tease him and try to make it look appealing!!

Today was pretty quiet- the girls swam most the afternoon away while jon worked hard on his speech..he's been FREEZINGGG so terribly lately..

I got to step out thanks to sunny eggleston to go to r/s homemaking..it was nice to get out for an hour...

Well thats about all the update- tomorrow im keeping the younger 2 girls here since amanda will be here (jon mentioned that she was a little rough moving his legs around and stuff-so i will have to mention to her NICELY to be a little softer) and then the older 2 girls are going to the beach for the day with a friend of mine..

I believe Robert will be out tomorrow to continue to help jon with his speech and the business...

Keep praying for his stomach muscles- that he wont be SO cold all the time-and that he'll continue to focus more each day on his speech and get it written out- we cant believe its THIS next monday! YIKES!!

made it..

well he made it thru the nite and slept well..i went to my room around 2am and set the baby monitor up and couldnt go to sleep till 3am because i was crying worrying about losing him..this is so dang hard sometimes...
i woke at 430am and rotated jon and meds and all that and ended up leaving a note for my morning child care helper - which i THINK was whitney delahunty?? and amanda..whitney took all 4 girls for me - SO NICE! especially today!! and then amanda quietly came in and took care of jon without ANY of my help!! SO THANKFUL!!! im so incredibly grateful for her already!!!!
jon had a GREAT morning program - so hopefully everything else goes well today..
i will be listening to see if jon has any kind of cough thru out the day..and keep you all posted...

its been SO nice to have amanda here because i can make all my phone calls!! i called on his wheelchair and they STILL dont have it ready - or close to it! were still waiting on PAPERWORK! AHHHHHHHHH SO BUGGED!!!!!!!! im ready to drive down to corona and have a word with the owner- this is ridiculous!!!

well back to the phones..

ill be up all nite...

well its 1222am on tuesday now..i stayed down stairs to keep an eye on jon and get some emailing done..he all of a sudden started coughing and needing my help..he doesnt really cough at all..so i have to push on his diaphragm a certain way to help him cough..it was kind of freaking me out! so now he coughs it up and it gets back down..im not sure if he's congested all of a sudden or what?? so it looks like ill be up all nite to make sure he can keep breathing and not choke on coughing or lose air doing it..i REALLLLY dont want him getting pnemonia or anything like that!!!!
well after an hour i decided to call our home teacher sheldon mcgee to give jon a blessing..he was starting to make me nervous and i just didnt feel good about things..he quickly came over..
its now 1am..ill stay up a little longer to see if he falls asleep and is okay..
he was telling sheldon that he'll wake up, not able to breathe well and start to get all tingly like he's going to pass out..AHHH this is so hard!! im just grateful sheldon is here and were able to call and have Heavenly Fathers help- especially in times such as these..

okay well its 145am..jons been quietly asleep for about 45 minutes..i think i'll go to bed now..ill set the baby monitor up just in case..i had called robert after i called sheldon to let him know what was going on with jon..he was so sweet- he called at 130am saying he JUST couldnt sleep and wanted to make sure he was okay..he was worried he woke him back up- but i had hid the phone in the bathroom..so he didnt wake up YA!
well off to try to get some sleep..GRATEFUL amanda is coming tomorrow morning!!

Monday..

Well we got home last nite around 10pm..i got the girls to bed and then jon settled for the nite and i got to bed around midnite..
This morning my Aunt Vera Todd, one of my moms 9 other siblings (7 girls/3 boys) who use to live in the Orange Stake and now lives in Las Vegas with her husband Deon had her life change today. Aunt Vera woke around 7am today and noticed that Deon didnt look right, she felt him and realized he had passed away. She called the paramedics right then and they came and told her that he'd been passed away for some time and it must have happend thru the nite. Its moments like these that you realize how quickly anyones life can change forever. The family is grateful to have the Gospel and to know that families are forever and one day we will all be together again.
Today i did my usual routine with jon from 930-1230pm..then my mom came around 130pm and i had a "chore list" ready for her- the girls had to clean their bathroom together, adn wipe down the stairs and load and unload the dishwasher and clean out and clean the fridge- my mom said they did great! we had to talk to them STERNLY before we left about them using potty words when were gone..she said they didnt use any potty words while we were gone - so success at something!!
then at 2pm we headed to the doctors..we met with the orthopedic doctor and he had jon move his arm..and since jon was able to move it to a certain degree he didnt feel like anything was totally wrong with his shoulder because he coudl do this certain thing- so that was nice to hear! he said keep working it in therapy and see me in 5 weeks to see if its any better..he said it might be because his deltoids are all tightened up and so that might be the issue..so we'll keep trying to work it at therapy..
we went to a new regular doctor..she is going to do lab/blood work to check on his electrolytes, were going to up his BP medication to see if it changes for him for the better..i realized it was only at .1mg..so were good..we got our new prescription for Dilaudid and some more lyrica we now needed..AHH its hard to keep up with all the meds to make sure i dont run out!!
anyway - it was a good session and we got home around 430 STARVED because the only thing we had all day was one bowl of granola cereal at 930am..
tonite we had our FHE- THANKS AMIE!!! and then had brownies- THANKS KRISTEN and off to bed they went..then at 9pm i started up my running again i havent gone for 2 weeks because i was JUST so tired and my body physically wasnt able to do it..it was a good run and im glad once agian to still be doing it!
im excited because tomorrow amanda the caregiver comes- YA!!! im hoping by wednesday she'll be able to completely do jons care by herself..cross your fingers! we REALLLLLLLLY like amanda!!!
well its near 1130pm now..ive been actually getting better sleep then i have before..i now just have to sleep in my own bed instead of the couch, do a little reading to focus my mind onto something else and turn the fan on- so far its been MUCH better then the past forever weeks..
my back has been getting more sore as the weeks go on..im still very nervous about it..ive been calling russell santos (almost everynite) to come transfer jon into bed for me at nite..im SO thankful he's around the corner and can just pop in and pop out and do that for me..im scared that one day i'll be out and no one will have been trained or have experience to transfer him for me! yikes!! this is again why im thankful that amanda can help do the transfers..it will be easier on her to just do them twice..vs me doing it 4 times a day or 6-8 times if we go somewhere in the truck! im sooooo grateful for all the help i get-were so blessed to have such wonderful people around us!!
tomorrow i THINK katie and seth (NOW MARRIED!!!) will be here to help..jon REALLY has to focus on his report thing..he actually was able to do so for a couple of hours tonite while the girls were down and while i went running and then just came home and did some of my emailing..tomorrow nite im hoping i can escape for a bit and go to r/s enrichment nite at sis. southwicks.. we'll have to see how the day goes