Jons Daily Schedule..

After my last post..i thought it might be helpful for you to better understand why we have such chaos in our life..by giving you jons daily schedule..so here its goes..
12am-Cath, rotation in bed and give meds(baclofen)
2am- rotation in bed and meds
4am-Cath and rotation in bed
6am-rotation in bed and meds
8am-Cath, rotation in bed, dressed and breakfast
9am-Meds
10am-rotation and meds
1130am-transfer to wheelchair
12pm-pressure release for 5 minutes (meaning i have to get onto the couch and tilt his wheelchair back into my lap to relieve pressure so he doesnt get a pressure sore)
12pm-lunch and meds
1230pm-pressure release for 5 minutes and then range of motion exercises
1pm-pressure release for 5 minutes
130pm-pressure release for 5 minutes
2pm-pressure release for 5 minutes and meds
230pm-pressure release for 5 minutes
3pm-pressure release for 5 minutes and meds
330pm-pressure release for 5 minutes
4pm-cath, pressure release for 5 minutes and meds
430pm-pressure release for 5 minutes
5pm-pressure release for 5 minutes
530pm-pressure release for 5 minutes
6pm-pressure release for 5 minutes, meds and dinner
630pm-pressure release for 5 minutes
7pm-transfer back into bed and start bowel program
730pm-transfer jon onto commode chair for continued bowel program
8pm-transfer jon back onto bed, change clothes, bath, and meds
9pm-meds
10pm-meds and rotation in bed
12am-Cath, meds and rotation in bed

so as you can see - its VERRRRY busy and LOTSSS of chaos in our life right now..mix his schedule in with him having physical therapy at the home 3 times a week and occupational therapy 3 times a week, plus 2 doctors appts which will take a total of 3 hours getting there, waiting and returning home...

i have to help with all of that AND then help the 2 older girls do their homework from 3-4pm, try my best to have rachel practice her piano each day, feed girls breakfast, lunch and dinner, make them do their chores for the day, try to keep the house quiet for jon, change diapers, get juice cups and snacks, keep an eye on jon so that he doesnt black out or pass out, constantly ask if he's okay or does he need his feet up..if he does i have to be right there to do so or ill be in a HUGE mess, feeding him, getting a drink of water when he needs it, answer the telephone, work on our business by answering phone calls, checking and responding to business emails, staying on top of our business accounting, making sure and paying all business bills on time, getting my mail each day, staying on top and paying our home bills on time, getting girls bathed and showered, teeth brushed, prayers, fhe, scripture reading each day, fighting the fires between 4 young girls each day, working with a 2 year old who SCREAMS if im not right by her side constantly, laundry, washing all of jons towels, sheets, pillowcases, clothes, as well as all of our clothes, having all the neighborhood kids constantly in and out of the house, back and forth from the backyard to the front yard, making sure becca doesnt go outside and into the street, working on getting social security to help us out- which working with the government is a NITEMARE, keeping everything filed and organized regarding jon, bills, insurance stuff, charts, medical records, social security stuff, equipment manuals, numbers for when equipment breaks down, state disability information, TRYING to find a caregiver who can help me, figuring out what im going to do for 3 of my daughters bday's coming up this month and next month, trying to prepare for 2 weddings and the hales family cruise that had already been booked and paid for before the accident occured which will all occure in the month of june and THEN wanting some alone time by myself and on the computer but too tired so i just want to go to bed instead...

so as you can see...my life and jons life is extremely difficult right now, maybe people dont really know just how hard it is..i hope this may help you to realize when people ask "what can i do?"..that all i can say is..theres so much i dont even know where to start!

i KNOW this will get SO MUCH easier..but right now its REALLY hard and REALLLY hard on me the most right now..this is why im struggling to find a balance and help from a caregiver..because jon requires SO much ALLLL day and ALLL thru the night...it really is a LOT of work

Special Day for all of us...

Today was a special day for all of us..jons family came, todd his family, mom, dad, scott, kellie, katie, and seth..we enjoyed a yummy dinner and yummy desserts..jon really enjoyed being around family like old times when we had everyone over for fast sunday's once a month..
we had to laugh because EVERYONE wanted to give jon a "pressure release" that means they have to tip jon back in his wheelchair onto their laps on the couch..i had to tell everyone to calm down - no fighting- everyone will get a turn!! he has to have it every 30 minutes anyway!! it was so funny!!!
Jon ended up eating his WHOLE meal by himself again! the family was SOOo excited to see him do that!!!
then he got tired around 7pm so we rolled his bed in thru the french doors..so he was half way sitting in the office and half way in the family room with us all..he didnt want to be stuck in his room with no one there- WHAT a BLESSING it is that jake and sheldon put those french doors in - it was JUST PERFECT!!! i will be so forever thankful for those two men!!!!! thank you thank you thank you!! jon was able to just doze off when he needed to and we all got to just keep on chatting away like he was right there in the room - how wonderful is that!?!?!? it was just awesome!!
the kids were having a BLAST playing tower of terror in the garage with dad's wheelchair and commode chair..they would duct tape the kids into the chair like they were going on the ride..then swirl them around the in the garage- it was SOO funny! rachel is really the best cousin to have to think up of things like that!! she said she wants to earn money that way - giving kids a ride on daddy's wheelchair up and down the street- i said ya i bet they'd pay 25 cents - she said WHAT? only 25 cents!??! i was thinking like a dollar!!!! --- oh well..guess thats inflation for ya...
we were able to have someone come out and fix jons bed...it didnt seem right..the air mattress part..they ended up having to give him a different mattress..its worked great now..only when the boys unplugged it to swing him back into the office for the night-- it TOTALLY deflated!! so i had to get him out of the bed and onto the couch for a bit while his bed reinflated again..hopefully it works thru the night...
all in all it was a GREAT day - i think the family now understands where my needs are and how they can help...were so blessed to have family on both sides to rearrange their schedules and life to help us out in this desperate time of our life..
i feel im doing much better now..the family got to see HOW HARD it is with becca here..she's screaming all the time when im not holding her 24/7...i decided my new thing was to put her on the stairs and tell her..no screaming..you can come when you stop screaming..it took a bit..but she totally caught on..so that will be my new thing now to see if i can solve that problem - i could scratch that off my to do list!!
its really hard for me when people ask "what can i do to help"..i guess i have to think for me..if this was someone else..and i dont know if this is just me --but i feel like i wouldnt wait to be asked maybe..i would look at their situation and say..okay they need this and this and this..and then put people to work..thats something im struggling with --there are SO many things i need..and so trying to articulate and tell people what it is -thats difficult for me..because i feel that they might not be able to help me in that capacity...and then i feel uncomfortable..im not sure if that made any sense to anyone..maybe i just need to ask more..i feel like for me i keep thinking isnt it obvious what i need help with.. or do people just not know what it is unless i say something...again i dont know if that made sense to anyone...
for example im so grateful for leisa how knew i'd want my home to be put back together like it was for jon to come home and just did that on her own with her husband pete..im so grateful for tracy who knew i'd want my home to be clean before jon came home and made that possible..im so grateful for teresa who just knew i'd need help with the girls and made that all work out with ladies in the ward..im so grateful for the relief society who knew i'd need dinners brought in and i need them NOW more then when he was at the hospital..im so grateful for louann who knew i'd need help getting rachel to piano lessons on tuesday afternoons- so she just comes and picks her up and brings her back for me..im so grateful for my sister heidi who knew i'd need help with food..so she's set me up with albertsons to get cereal and crackers and juice..basic things i'd need for the children..im so grateful for celesta who will call on her way to the grocery store asking how much milk, eggs and bread i had in stock..
i REALLY dont want anyone to feel like they aren't helping...i guess what i want to say is..if you feel inspired to help me PLEASE DO!!! i keep praying for Heavenly Father to help me..and i know i REALLY cant do this alone..by myself..its SOO hard to do this and know what it is i need..because i need SO MUCH and its SUCH chaos..that its even HARDER to pin point what it is i need right now...and again i REALLY dont want to offend anyone or hurt their feelings in ANYWAY..i just felt prompted to just put my feelings and emotions out there..i hope everyone understands what my intentions are..i guess maybe to not feel hurt if when you ask me..what can i do to help..and i cant tell you what it is..that you feel like i dont need your help or dont want it..it DO need it and i DO want it..i just cant pin point it very well..and maybe thats just something im suppose to work on about myself..
anyway - well im feel like im just beating a dead horse now!!! please know we are SOOOOOOOO grateful for the help we receive from everyone, family, friends, people we dont even know..its so overwhelming the support and love we feel...please continue to pray for jon..that his body will continue to function properly...his pain level has gotten down to a 6!!!!!! im SOOO happy!! he spent his 3rd day in the wheelchair all day..and again today with NO abdominal belt!!!!..little by little..he's getting better!!! he eats a lot now..he feels hungry now..its just so great..please pray that his spirit will remain high and his positive attitude will stay intact..also please pray for me..that this new caregiver will work out and i'll find a routine and a balance..and ESPECIALLY that things will fall into place for us..thats so important right now..
he's in MUCH better condition now for visitors..so ANYONE that is interested PLEASE feel free- PLEASE call our home first to make sure..but more then likely he'll be good..

Who doesnt love mothers day!!

Here are my fun things for mothers day...

More photos..

Here are some photos of jon in the backyard..and of russells portable ramp for the back yard...

Picture Time!

Here are some photos to share with you all...the guy in the yellow shirt is "Big Bill" Jons PT guy...
the guy in the blue shirt is jons favorite nurse Jerry..
the girl in the pink shirt is jons OT girl - another of jons favorite..

the photos are of jon getting into dads car to go home...

Saturday Evening...

Jon did great today..he is progressing..not nauseated at all today-ate everything that was fed to him! thats great!! he also stayed in his wheelchair from 1130-6pm..SO GREAT! he also did it without his abdominal binder- which is FANTASTIC!!

Sadly the caregiver that was here the past 2 days quit..she said its too hard to be getting up in the middle of the night like she was..i wish i could quit like that!! must be nice!! but thats how it goes with caregivers..SO we have the new one here that came this am to relieve the first girl..she has been SOOOO nice to our family..which has been awesome- she's constantly trying to help me when she's not helping jon..so sweet..i told her the plan for tonite..but she said - no you need your sleep..i will stay up all nite- i dont sleep its okay..SO we'll see how she does tonite- im glad the hales family are coming up tomorrow..maybe the caregiver can just sleep all day long!!!??? Im paying 150 to have someone stay here with us 24 hours..sadly ill still have to pay 156 to have Katrina stay for 12 hours..BUT i really need the help..so i guess i just have to pay for it..i hope it gets better though!!!

I was able to get in contact with ANOTHER caregiver agency..the own is LDS..i think i have a schedule sort of figured out for jon..im going to hire someone (Katrina) is her name..she will work from 10pm to 10am..so i can sleep thru the night..then i will take over from 10am on..im HOPING i can rely on the ward to help me with the girls during the day?? i already have it set up with carisa snow, teresa rassmussen and kristen thompson to take the younger 2 from 830/9am-1230pm..just in time to bring them home to put becca down for a nap..then the older 2 girls get home from school at 3pm..i'll do homework with them..wake becca up then work with jon again..i THINK i'll be okay with everyone but i may need to call in someone to help me with the girls..keep them entertained ESPECIALLY becca- if she wants me to hold her..she WANTS me to hold her!! then we'll eat at 6pm..and then sometime after that i might have someone able to come in from 7-9 or 10pm to help jon at nite..meanwhile i have elizabeth and melanie coming over m-thur from 730-830pm to help me get girls ready and into bed for the night..SO we'll see if this new program works..its SOOO hard to plan ANYTHING because im relying on so many people..and things are CONSTANTLY changing..so its just day by day for me..

PLEASE pray that i FIND a solution for this caregiver mess..and something that helps me help jon..i really cant do it on my own..and this scares me...so please pray that it works out..

enjoy your mothers day!!! i know i will being surrounded by family!!

Saturday...

Jon got settled into bed..as well as the rest of the family..we have a system set up where i am up at 2am and 6am to rotate jon and give him med's...i feel myself getting crankier by the day!! i havent slept well now for 8 weeks and i think its getting to me..
Jon slept well thru the night..we had a caregiver shift change..we'll see how this new caregiver works..i'd really like to hire someone full time that can help me with both jon and the girls..but im not sure if that's possible..thats an extreme amount of work to ask of someone..so we'll have to see..im not sure how that will all work out..
Amy Novak--thanks for the beanie!!! it really helps to keep his body warm-- it will be roasting in his room and he's freezing..so the beanie helps to keep the heat inside his body..so thanks!
We have no real plans for today..Sarah has a bday part at 11am..and thats about it..

i ask that you pray for me at this time..im really struggling to stay strong..its extremely difficult with the demands of jon and the demands of 4 children..i feel like im constantly being pulled in 20 different directions..if im helping jon..then becca's screaming cuz im not holding her..if im holding her..then jons waiting for me to help him..it can get to me sometimes..i know right now this is satan working his power to make my life more frustrating then it already needs to be..its to the point that when i see old pictures of jon where he's standing..it makes me want to scream or cry or just do both..so please pray for me..with Heavenly Fathers help..ill get things pulled together..

Friday has been good..

Today has been good for jon..he got up in his wheelchair about 1130am..i shaved him..for the first time in my life..ive never done that before..so he looks great now..he's been holding up better then yesterday..so we hope it just keeps going up from here...he still gets serious waves of burning pain..but were hopeful that we'll find the right meds to subside it..
he's got dr's appt's all lined up one on tuesday, one on friday, one on the 25th..i only have to schedule one more! not bad!! it is SO NICE to have the truck here with the lift in it so there's no need to worry about transportation!! thanks again dad!!!

im a little worried about how im going to handle everything..we have this caregiver till next thursday or friday morning..then i'll need to figure out how much we'll need a caregiver in the home..melanie southwick and elizabeth albrechtsen are going to be able to help me m-thursday from 730-830pm to help me get girls showered/bathed and ready for bed by 830pm..THAT will be an ENORMOUS help for me..so far is seems in the morning and at night are the hardest on all of us..during the daytime its not too bad..we'll just have to see how it all turns out..that the thing..i just dont even know what my needs are..all i know is ill have needs- just not sure what they are and how to handle them quite yet..

Looking forward to mothers day on sunday..jons family will be here at the home with us and we'll for sure be doing it paper product style!! they are bringing everything..so that will be nice..

continue the prayers..we feel they are truly working!! i ask that you pray for his spirit and mind..he just feels right now like he's just sitting around doing NOTHING!! this is the kind of person that would never even watch tv..because it wasnt productive!! drove me crazy!!! so i cant imagine how he's feeling not being able to do anything but sit in his chair and watch us all whiz on by thru the livingroom...i worry for him..that it will affect him...the doctors are worried too..so PLEASE pray that his pain will go down..that the right meds will be used and found and his spirit will remain strong..

we just found out yesterday that it looks like our insurance WILL pay for wheelchair!!! initially they were ONLY going to pay 2500 TOTAL for ALL equipment which is SOO sad..but somehow somebody talked to them and now they will pay the full 10k for his wheelchair!!! THEN we also just found out that HealthNet is taking over Universal Care on July 1st..so we'll have MUCH better benefits once that takes place- were SOOOO thrilled!! what a blessing for us!!!! It just shows in a SMALL SMALL way just how much Heavenly Father loves us and is looking out for us..and if we remain strong and faithful..things do work out..ive ALWAYS felt this way..and this just proves to us again that that is a true concept..how grateful we are for a loving heavenly father...

help with supplies..

Thank you Aunt Colleen and Leann as well as the McGee's for giving us trash bags, gloves and baby wipes..we are still in very much need of sheets..thank you!!!

Supplies needed..

If anyone is able to purchase latex gloves - i hear they are cheap at home depot or lowes...also white fitted and flat sheets (we bought a pack of 12 flat sheets and pillow cases at sams club- the kind for like hotels) for a twin size mattress..also LOTSSSS of baby wipes- nothing fancy - just the cheapy generic will work..
THANKS!!!!

Had a good nite..

Jon had a good nite here at home..we finally got to bed around 11pm...i think everyone was wiped out!! Kim woke up every 2 hours to rotate him and cath him when needed...poor girl!! shes been AMAZING for us!
we had two caregivers come get trained by kim and myself today..we picked one girl to work the rest of today, and friday then saturday morning till monday morning the other girl will work..then this girl will come back monday morning thru thursday morning..thats when i will need to decide how long i really need a caregiver for...im STILL looking for anyone that is able to help me..if you have any ideas PLEASE EMAIL ME!!
Today jon hasnt felt good at all..he's been really nauseated and really tired..he only spent one hour in his wheelchair..were hoping its just because the medication..since they up'd it so much..PS JEREMEY POULSEN EMAIL ME...hopefully tomorrow or the next day he'll be back to his old self...although he's miserable he LOVESS being home!!
im thinking i seriously need a secretary to help keep me on top of things!! its out of control in my head..as much as i try to stay on top of it all..i keep adding things instead of crossing them off i feel like!! example..social security already denied me w/o my full papers being filled out which i've filled out but still need to get over there to re apply..ugh - what a pain!
Our highlight for today was the girls got a new black bunny - i know i just need to shoot myself...its actually been fun for them..they've all just been outside playing with it..im waiting for the "were bored with it can we get something else!??!" UGH! im really NO PET FAN WHATSOEVER..so i told them they are TOTALLY incharge of it!! im only going to tell them- time to clean it- but im not cleaning it myself..they get too-- we'll see how long that lasts!!! i think i like it because its like a REALLY QUIET puppy!! it hops around the yard, they can hold it, feed it, clean up after it, and it DOESNT BARK!!!
well its getting near bedtime for the girls, time to round them up and get started on getting them to bed...thanks again so much for your constant prayers..they are still so desperately needed...pray that his body will acclimate with the new doses of medication..he really wants to get back to life again and not spend it in bed day after day having someone care for him-- who wants that kind of life anyway! we know he's capable of it- we just need his body to catch up with the medication..so pray for that very specific thing...
also we are in need of LOTS of kitchen size trash bags...were CONSTANTLY washing white bedding and towels for jon over here..so the trash bags would be GREAT!! also some sort of container type thing we can put linens in and stock all of his meds in and all of his supplies in and etc thats lying around in the office..tracy THANKS for the things you bought- SO HELPFUL!!!
i forgot to mention that jon ate his WHOLE MEAL last nite ALL BY HIMSELF!!!! can you even believe that!!!!!!!! i was SOOOO excited!!!! thats so great of him! im so proud!! he'll just get better and better- i just KNOW it!!

WE MADE IT!!!

Well jon is FINALLY home with us today!!! WHAT a day!!! i had to start my day running all over town trying to find a pharamcy that had his meds..then to the hospital..then talking with everyone regarding his pain and what the "new plan" would be..then making sure insurance was on top of things..etc..etc..
i ended up needing to call kim to come help us! YIKES! WHAT would i have DONE without her!!!!!!!!!!!!!!! she's literally a life saver for us!!!!! i have 2 caregivers coming tomorrow to be trained..i will choose between the two of them..and we'll take it from there..Kim has committed to staying with us for the first 24 hours and then we'll see what happens from there...
we finally arrived home about 4pm..there was a HUGE banner welcome home sign for jon..along with our freshly washed truck that had the passenger seat lift thingy installed- it is SOOOOOO sweet!!!!!!!!! my dad worked on getting that together and its SOOOO nice!!! i LOVEEEE it dad!!!! thanks SOOO MUCH for getting that taken care of!!!!!!!!!!!!!! im SOO happy with it -- i'll have to show you all the "newly pimped out truck!"

jons parents were with me during all of this..and the santo's were here, the mcgee's were here and kim..tracy had someone clean the house and she did ALL my laundry - the house smelt SO nice!! i totally feel like i can start fresh vs trying to find out where to begin..

teresa rasmussen had my girls and then carisa snow..THEY are life savers too..kristen also..those 3 ladies have had my girls everyday for a LONG time!! thanks guys!!

we had a Press Enterprise journalist come to get some information about jon..then we ate dinner and then i got kids in showers and into bed while kim helped jon settle in for the night..the girls are in bed and now kim and i are almost done with jon for the night..i probably will sleep SO well tonite for once the past 7 weeks..i cant believe its been THAT long!!

i LOVEEEE having jon home now!! just having his presence here is SO amazing already!! im so happy now!! i do know this is where the hard stuff starts for me..but hey atleast he's home now...

they have up'd his nuerontin WAY up and up'd his lyrica as well..so we'll see how his pain level is tomorrow..hopefully were now on the right track..Dr. Desiree (Goble) Sadeghi will be his primary care physician. She is in our ward here and so im VERY happy about that as well..

well i need to finish up and get to bed - im sooo exhausted!!! you REALLY have to be SOOOOOOOOOOOOOOOOOOOOOOOOO organized with all of this- its seriously out of control everything i need to stay on top of for jon...its totally overwhelming..but i feel manageable with a good attitude..it can be dealt with..thanks to amie for making my my organized book to help me!

thank you for all of your prayers for getting jon home safe with us..please pray that this new line up of med's will work for him -- and that he'll maintain his happy attitude and positive spirit..

On our way home

A pain management doctor by the name of Dr. Reynolds came and talked to Jon. Jon felt like this was the first time someone listened and tried to find a solution for him. Jon now will be taking 600mg of Nuerontin 3 x a day and 200mg of Lyrica 3 x a day. Jon and Christina will be leaving the hospital between 2:00 and 3:00 for anyone that wants to go to the house to await his arrival.

Today's the Day!

oh i SO HOPE jons feeling good today..im pretty sure he's not going to be because of his pain..im waiting to see what they'll do about it...
meanwhile..those that are interested are welcome to come over for his "arrival"..i just dont know how up to chit chatting he's going to be today...i imagine we'll be home somewhere between 12-3 time frame..just depending on whats happening over at the hospital regarding discharge stuff...
thought id just give everyone a heads up on that..
im scrambling AGAIN to find a caregiver for jon...they girl the agency had "called in sick this am"..so they were sending over a male..i told them to turn around i refuse to have a male caregiver in the home..they're comment was "well he's gay" STILL I SAID NO MALES!! so now im really freaked out..i imagine i'll just plan on having people help with the girls completely so i can work with jon completely..we'll just have to see how it goes..pray that it goes well - cuz im super nervous about everything!!!

request for flooring help..

If anyone (adults) are available to help jake with flooring saturday morning..please come to the house here..THANKS!

He's home tomorrow...

im not even sure where to start with this posting..i feel like im always complaining on this thing - it probably doesnt uplift anyone!!?? well here it goes for today..
i left the house about 9am and headed off to the hospital..the caregiver was there viola ..sweet lady..also both of jons parents, scott, katie and seth were there as well...we did a LOT of training today - everyone felt good and positive about what they learned..
jon went and got his bladder scan done..they said he's not "leaking anything" so alrighty then - guess thats good..
after all the training..we decided to clear out jons room and get it all loaded up into the trunk of my car- which is now totally full but im WAY too tired to get it all out..so tonite it sits! after that jons family left..
i was CRAZY busy today - between constant phone calls..things going on at home..getting supplies, equipment, prescriptions, drugs...etc..its endless..getting all that ready so he could be discharged..the hospital sends you home with NOTHING- NO drugs of ANY KIND..its up to YOU to get the doctor to write the prescriptions then get the nurse to fax it over to walgreens..then up to YOu to drive over there pay and pick them up...i got to the walgreens here..i had the prescription for the REALLY heavy drugs..which they said "they didnt have any and would call another 24 hour walgreens"..so they did..they had some..but i was WAY TOO tired to drive CLEAR back to another part of town to get them..thats all i needed to have happen..fall asleep with some SERIOUS heavy narcotics in the car WHICH ARENT EVEN MINE!!! that would go over well with the police im SURE!!! so im just PRAYING nobody comes in needing those same 2 things i need to get tomorrow for jon..
we are still totally frustrated with jons pain thing..he's still been at a 8.5+ pretty much all day..they've REALLY lowered the nuerontin almost completely and up'd his lyrica alot...which sadly has done NOTHING for him..we keep waiting to see if the lyrica will do anything..but looks like its not doing anything..THEN on TOP of that we find out our insurance wont even PAY for the Lyrica anyway!! SO FRUSTRATING!!! i asked how much at walgreens it would cost..250 dollars!!! and the insurance ALSO will not pay for lovenox..which is a blood thinner..thats another 200 something..they said that sometimes you can have the doctor request and authorize it and the insurance will pay for it..which i THOUGHT is what had happened today anyway..but now seeing that jons not responding to lyrica anyway - we may just have to change things around anyway..i believe we did figure out a way to work around the lovenox as well..to have the insurance pay for that too..
so as far as the pain management goes..they were "paged"..and the doctor "was suppose to give them a heads up"..but WHO KNOWS if any of that even happened..we told them we WERENT leaving tomorrow UNLESS pain management CAME in and TALKED to jon personally...this is out of control now...there's no sense in having him on something thats not effective and the insurance wont pay for anyway..
we had this agency that sent me a caregiver to be trained today..while she is a very sweet lady...it wasnt a good match..sadly..lets just say i wouldn't feel comfortable leaving her along here with jon..she couldnt do the transfers very well..and she had trouble doing other things..so i asked jon (thinking maybe it was just me!) and he felt the same way..so we called the agency back and asked to have someone else..he siad that "usually they have a male caregiver for quad patients"..i said "in no way was i going to have a male caregiver living in my house with 4 little girls while my husband is there in NO shape or form able to protect me"..i wasnt ABOUT to have that happen!! the agency asked "well what about a live out male giver"..i said something.i wasnt willing to compromise my family in any kind of situation like that..you just have to be careful these days!!! so they called back and said they have ANOTHER girl..her name is heidi..she is 20 -30 years old..so we'll see..but im TERRIFIED about having a caregiver..not having one but just FINDING one!!! i REALLY need someone who is capable for 24 hours atleast for the first week so i can figure out what exactly my needs are going to be..i have NO IDEA!! anyway - just pray for me that something works out..
tomorrow the plan is for me and jons family to meet at the hospital around 10amish..and then we'll see how long it takes to check him out..it will be a good day..he's excited to be home in a controlled enviornment where nurses wont FORGET to give him his medications..that things will run smoother..everything hopefully will be better...
well im SOOOO tired now..i feel like i just need to sleep for 2 days straight..im overwhelmed with everything thats going on..im frustrated that jons in such great pain and not getting better..i feel incredibly guilty that i havent even seen becca since YESTERDAY morning for 3 minutes..the older girls ive seen only 5 minutes in the morning before they are off to school..i still need to find some sort of outpatient therapy place for jon..i need to solidify a plan for some sort of caregiver for jon..after the first week..what i will do after that...figuring out something for my younger 2 girls during the day when im so crazy busy with jon..alright enough of the negative stuff!!
tonite was SO special for me..jon was in his chair..we finished prayer..and i was heading out..i went to give him a hug..and to my SURPRISE he hugged me back!!! and he squeezed me a hug!!! it was SOOOO wonderful!!! i of course was TOTALLY crying!!! i FINALLLLLY felt normal for once...its so hard because when i hold his hand..he cant even feel it...thats so hard for me..and him too..but to feel a hug from him was everything to me..it was just awesome..
okay well now im crying AGAIN..so its time for me to end and get to bed..tomorrow and the rest of my life is going to be even harder..time to say a good prayer and hit the sack..

carpet/wood flooring..

Im going to wait on the carpet until the flooring is complete..so jake if your able to come finish those last few things let me know..or i can have someone help you/us with the rest of what needs to be done..it would be great if anyone is able to finish off the kitchen as well so that everything can just get done at the same time..if not we'll work with what we have - no biggie!

Monday Madness!

To start off...Susan McKell..we got the tile guy back on track..so were good with that..Russell..we have the cement company coming to tear out and pour the concrete tomorrow..Jake we have the carpet guy coming tomorrow to lay the carpet- Kristen while you are here..im going to leave my checkbook with you so you can write checks to those that are needing it..ill make sure you know how they are.. WHEW!!!

Today was good - Kim came to the hospital to get trained SO FUN having her there!! i feel TONS better knowing Kim is able to help as much as she can..her and i can lift ANYONE now!! we did mostly training all day today..jon and i spent some time outside for about 20 minutes too..that was nice..
earlier today we had about 7 people in our room..jon and i went off about how unhappy we were with how things were turning out..anyway - after MUCH communication we all worked it out..the plan is for him to still leave may 10th..and that he'll have pain management over his case..so that works for us..they are continuing to drop his nuerontin off completely to get him fully on Lycira (sp?)..we'll see how that works..i fed him all his dinner and then i left for the evening to get back home to the girls..

So the plan for tomorrow is to be at the hospital again for more training..we'll have jons parents there and maybe brother too...ive been trained a lot in a lot of different things..they said im REALLY good at transfers! even better then some of the nurses they say - WHOO HOO!! so jon will be in safe hands..

I ended up having to just use an agency to have someone here 24 hours for the first week..she'll be at the training tomorrow..hopefully were a good match and it all works out..its going to be pricey but atleast its the cheapest of the pricey!>?!?!

Well im TOTALLY overwhelmed with everything that is happening..i CANT BELIEVE he'll be home in 2 days though!! I hope everything just comes together!!!

Sunday..

Today was good for the most part...we ended up playing the PS2 Karokee..it was fun..
then Kristen Thompson brought dinner over..so i dished everyone up..we said prayer..then i scarfed down my meal while his brother todd fed jon..and then we switched..i fed jon and todd scarfed down his meal..it was then i realize just how HARD this is going to be..on all of us..not just me or jon but the girls as well..
becca just wanted to be on my hip the entire time..and if she wasnt then anna was..and if she wasnt then sarah was..
i talked to carisa about setting up some sort of system during the day that the younger two girls can go over to her house like if they were in preschool..to get them use to doing something like that..i think thats a great idea..she also talked to me about having someone come during the day to just help with the girls - so im going to work on that as well..
we got jon back to the hospital..and got him ready for bed..his pain was still at an 8..the pain management team was either coming in tonite or tomorrow..im guessing tomorrow...so we'll see what happens from there..
PLEASE pray that the pain management team will get his levels back to where they were on saturday..and pray for jons attitude and spirit to still be strong..and PLEASE pray that im able to find a caregiver for jon to be here..the girl i have i have SUCH difficulty getting ahold of her..im expecting her to come for training tomorrow..im SO worried!! its VERY hard trying to find a caregiver..ive looked online thru the press enterprise classifieds, the oc register classifieds, craigslist.org..website..the agencies want 150-200 for a 24 hour person..privately i can get someone for about 100 a day..its just trying to FIND someone privately that is my issue..150-200 a day is a LOT of money!! yikes!!
pray that everything falls into place for us..everything is so up in the air right now its a little nerve racking..i know that it will..it always does..we just have to go thru the craziness to appreciate heavenly fathers help when he gives it to us..
jons been really nervous that i wont stick around for him..hes nervous that i feel embarrassed to have him now as my husband..im so sad that he feels that way..im really surprised that he even has those thoughts! but he says..lying in bed day after day..you have LOTS of time to think about EVERYTHING..im definatly not leaving..its not an option for me..well i guess its always an option..but i married for eternity..and this life on earth is SUCH a small time compared to the big picture!! i love jon because jon is jon..he treats me like a queen..he's very loyal..my needs have always come before his needs..he respects me..he supports me..he encourages me to do good..he gives the BEST hugs..hes a gentle father..he's very intelligent..his eyes light up when he smiles..there are so many things i love about this man..i will never leave..never..

Jon made it home for a bit today..

Well its almost 4pm..jon has been home about 30 minutes..he's still at a level 8 pain wise..so we'll see how the rest of the day goes..right now rachel is on jons lap playing the piano for him..SOOOOO CUTE!!!!!!! the girls are practically running circles around him...
the flooring is FANTASTIC jon said - he LOVES that he can spin around on it!!