Thursday, September 28, 2006

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!!

Monday, September 25, 2006

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..

Friday, September 22, 2006

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...

Thursday, September 21, 2006

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!

Tuesday, September 19, 2006

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, September 18, 2006

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, September 17, 2006

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..

Friday, September 15, 2006

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..

Thursday, September 14, 2006

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!

Tuesday, September 12, 2006

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!!!

Sunday, September 10, 2006

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, September 07, 2006

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, September 04, 2006

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!