Thursday, August 31, 2006

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!

Tuesday, August 29, 2006

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..

Monday, August 28, 2006

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..

Sunday, August 27, 2006

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...

Friday, August 25, 2006

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!

Thursday, August 24, 2006

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!

Wednesday, August 23, 2006

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!!

Tuesday, August 22, 2006

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!

Monday, August 21, 2006

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!

Sunday, August 20, 2006

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!!

Thursday, August 17, 2006

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!!!!!

Monday, August 14, 2006

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!

Sunday, August 13, 2006

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, August 11, 2006

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, August 10, 2006

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, August 09, 2006

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!!!!!

Tuesday, August 08, 2006

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, August 07, 2006

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

Sunday, August 06, 2006

Sunday..

Today is Sunday..its always nice to go to church and rejuvenate yourself! We got up and the Kennedy's came to get the girls ready while I got jon ready for church- this is the 2nd day he's gone without his long white socks- they were used for his blood pressure so that he wouldnt faint- SO NICE that he doesnt have to wear those ALL DAY LONG!! so this is improvement!!!
We made it to church and for the sacrament- it was fast and testimony today - it was great to hear members of the ward share their feelings about the Gospel..alot of families are moving and it was neat to hear from some of them too..
Our home teacher came - Sheldon-and gave a great lesson to our family..we're thankful to have a Home Teacher that takes his calling seriously and does what he can for our family..
Well one more hour and we leave for DINNER!! im STARVING-oops i mean im FASTING!!

Saturday, August 05, 2006

chasing Dilaudid...

well today was spent "chasing dilaudid"...this is one of jons heaviest medication..is so heavy that i have to literally go into the doctors office to have him write jon a prescription THEN take it to walgreens to get it filled - EACH TIME!! so friday i realized we were low- REALLY low so i had called the dr to get the prescription-we'll he was busy and didnt call back till the end of the day at 430pm..i was out doing something and missed the call..i checked the machine and he had called UGH!
so the next day - today saturday i called the dr's office and got the answering company and they paged the oncall dr for me..she called me back 30 minutes later. She told me she would be at Riverside COmmunity Hospital and that she'd call me in 2 hours when she got there and then i could go physically pick up a prescription from her. So 4 hours later- no call. So i called the answering company again and had her paged. She called 30 minutes later to tell me she was at the Hospital and i could drive clear down there to get the prescription - and that it could ONLY be for 6 pills..UGH again..i thought we'll 6 is better then 0! So i drove down there- she told me to have the front page her- so i did - 3 times- finally i had to call the answering company AGAIN to get them to page her..after 45 minutes of waiting at the hospital she came down with it.. i thanked her graciously and flew to my car and to walgreens ONLY to get there at 610pm- missing the 6pm CLOSING TIME!! UGHHHHH so i pulled into albertsons- same thing closed at 6pm on saturdays...
So i went home - we had dinner- bathed kids-painted everyones fingers and toes- got church clothes ready -family prayer and off to bed they went - i got jon into his bed and situated with a movie on tv and i headed out AGAIN to get his dilaudid at 9pm..at 1015pm i was finally home with his 8 actually instead of just the 6 Dilaudid..WHEW!!!
It was nice that he didnt have any reactions to not having his dilaudid..he missed one dose only really..his 4pm one..he's now down to taking only 2mg 4's a day..so were hopeful that we'll get him completely off of it..although he's having TONS of spasms in his legs and it takes SO MUCH strength on my part to move his legs around now anymore..i can feel my body taking a fast toll because of it..
Tomorrow we will head to church- makes a big difference if ive got everything organized the nite before..then we'll come home to all nap and then head down to OC to jons parents for our usual fast sunday family dinners we use to have before the accident..this will be our first since the accident- so it will be nice!! we each rotate and host it and then its usually potluck..its between the hales home, our home and todd's home..its been SO much fun this past year to do it!!
Well its now 11pm..im off to bed!

Friday, August 04, 2006

Friday..

STill having issues sleeping- SO BUGS!! i cant get my brain to shut off..i may have to take a pill again to see if that helps..im just always thinking and thinking and thinking and turning and turning on the couch..it gets old!

Jon did well today though- we got everything done this morning..sandra came out today for the day - she's still here! she's learning how to cath jon and to do the all nite indwelling cath too - SO NICE!!!!!!!!!!!! im SOOO incredibly grateful that she wants to learn these things to help me!!

Well thats about it for today- time to get back to work and show sandra the "nightly routine"..

continue to pray for his stomach!! its interesting to note that in his feet- they are sensative like his arms use to be in the beginning of the accident- pretty neat huh!!!

Thursday..

i dont remember much of what happened on thursday..only that i was REALLY tired!!

scott came for the day and helped jon alot with his business..we got off to the urologist to sit for an hour for him to say- everything looks fine - we'll see you in 3 months and we'll send your urine sample to the lab and i'll call if there is anythign wrong with it..

we came home to find the weblos anxious and excited to wash our 2 cars inside and out and then to get to go swimming in our pool- they did a FANTASTIC JOB!!!!!! thanks guys!!!!!!!!!!! they were impressed that jon had his eagle by the time he was 13 years old..but he never got around to the "paper work" till he was 16..he said that there were SO MANY moms and dads and support in his ward and stake to help him get badges done so fast - he couldnt have done it without all of you!!

my friends took me to dinner..it was nice to get out for an hour!

Wednesday, August 02, 2006

couple photos



here is a photo of grandma's bday and today of my girls all in pigtails..

Wednesday..

Today the caretaker amanda came- we REALLY REALLY REALLY like her! she jumped right to do the transfers with my assistance- i got SO much done- stuff for work, around the house-it was WONDERFUL!! we started her at 15 per hour and then in 30 days we'll reaccess and if she can everything without my assistance then we'll pay her 17 per hour for the 3 hour shift..she could only come tuesday and today..then next week it will be tuesday wednesday and thursday..then gradually more and more days..so keep praying that it sticks!!!!
Jon did better today..he was more alive when his dad was here working with him on his speech..poor robert was here till after 9pm! Jon says he doesnt like that he doesnt have a lot of hours to work..he doesnt get out of bed till after 1230ish..and then it takes SOOOOO long to do anything..it gets a little frustrating for him...
Its interesting to note that jons feet are SOO sensative now..they are sensative like his arm was at the beginning of the accident..we'll see where that leads us!! hopefully somewhere good!! Also he continues to eat his dinners by himself. He also is able to really use his arms well. He can lock his elbow on the hook at the back of the wheelchair to shift himself around. He can also bend his elbows on the bed and hold himself up on his elbows which is fantastic and so encouraging! I feel like he's using his chest belt LESS and LESS these days! that too is so encouraging!!

I just wanted to take a moment and thank those that are STILL praying for us. Right now the family is asking that we all unite again and pray for something specific for him. One being that he has more energy to finish his speech. Two that he gains more stomach muscles. These specific muscles are the core to his body. He feels like he is gaining them back. We ask that you pray for his stomach muscles to come back and function even further.

We continue to be VERY grateful for the dinners that continue to come in nightly by the members in our ward, our friends and our neighbors. This TRULY lightens my load and im SOOO incredibly thankful! Im thankful for my friends that continue to invite me to escape for a couple of hours- 9/10 times im just too tired to go-but im truly grateful!

Tomorrow we have Scott coming to help jon for the day- also we have a 230 appointment with the urologist- so well see what happens from that appointment.

I forgot to mention he did take his FULL BP med today-his pressure were these today, 104/70, 80/47, 78/49, 91/61, 91/35, 92/63, 97/64 and his heart beat was between 64-71..we'll keep taking the BP and monitor his BP...

I wanted to add that DID get ALL four of the white dresses that my girls wore that ended up with dirt and chocolate covered all over BACK to white dresses again- amazingly! Rachel made a comment at the wedding- its okay to have chocolate and strawberries because mom has this magic stuff that gets our dresses totally white again!! I used TONS of shout spray from the bottle and gain detergent and NO bleach- they look great again- im so happy!!



Well back to work for me- its getting late!

Tuesday, August 01, 2006

tuesday..

well tuesday is nearing the end now..its a little after 7pm..the nite went well..jon woke up in a terrible sweat..i jumped up to figure out what was going on..apparently his bag was up too high and it wasnt draining..so i lowered the bag and then the sweating stopped..WHEW!!
today the caregiver came, amanda, she did great! she'll be here tomorrow and she's able to work for us..SO we hope and CROSS our fingers AGAIN that this works!! PLEASE PRAY FOR THAT!!! she will be here tomorrow and then tue, wed,and thur of next week then by sept she'll be mon-fri for me- YA! and she lives in mira loma so its close enough for her...
today tracy took me to lunch and then we stopped off at susie's deals - where everything is 5 dollars or less..i had SUCH a hard time spending 5 bucks on a shirt for myself!! a lot of it was 3 dollars even..anyway- it was wierd-i got a couple shirts and a couple shirts for jon, and a dress for becca and anna..it was really nice to do something normal for an hour though!
we came home, had our dinner, the girls did their buddy thing and are all bathed for the day..jon did more on his speech..he said he doesnt feel like the BP meds are working..he's still crazy tired..im wondering if his UTI is worse or something?? thats all i can think of..good thing were going to the Urologist on thursday!
Tomorrow jons dad will be here to help him along with his presentation..
oh i forgot - sarah came downstairs to inform me that the upstairs bathroom had water everywhere..so i go up there to find a clogged potty with EVERYTHING in it and it apparently made its way to the floor- GROSS!!!!!!!!!! so i used my bissel to suck all the water up..but i couldnt unclog it..anyway - one of those things i'll have to figure out how to fix it instead of jon..
well back to the grind!