Sunday, October 29, 2006

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!!

Wednesday, October 25, 2006

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, October 23, 2006

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, October 20, 2006

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, October 19, 2006

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, October 18, 2006

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, October 16, 2006

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!

Friday, October 13, 2006

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!!!

Sunday, October 08, 2006

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!

Saturday, October 07, 2006

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!

Thursday, October 05, 2006

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??

Tuesday, October 03, 2006

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

Monday, October 02, 2006

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!