wednesday

Wednesday
Well today has been better then the past 4 days for me. I got up and got everyone going. I had gotten room service to feed me and the girls and jon and kim…the 2 small girls ate- theni dressed them and dropped them off at kids camp- only for them to call saying becca was crying..i was RIGHT in the middle of jons bowel program with him passing out and really didn’t have a minute to run up and get her..anyway –they figured out she was just afraid of “carnival freddy” the mascot thing…then she was fine..kim got jon dressed for the day..Sandra took my 3 older girls to the exotic beach. I really wanted to go but felt like I needed to be here with jon and becca..i was able to put becca down for her nap and then me and jon stayed in our room – we waited for 1.5 hours for Robert to come be with jon but figured he must have ended up going off the ship too…so we went downstairs to get some lunch and then we sat on the deck outside..i even managed to get jon in a lounge chair – AMAZINGLY!! I stacked two of them so they’d be high enough for me..then I just put him on it..we napped for 10 minutes before this MAJOR storm came!! It was crazy!! The kind where one of the taxi’s that kristi’s family took almost got hit by a light pole!! Jon was loving it and I was freaking out- I made him go inside..actually I just lifted him back into his chair – he didn’t really have a choice!! So we then came in our room and the girls were back by then ..they all got checked back into kids camp..then becca woke up so I she stayed with me and jon in our room..then it was time for dinner..they all wanted to eat with us..so we took them to the nice dining place..poor Rachel has a BAD earache..so I had given her Tylenol and she was in her room..after dinner I dropped the girls off back at kids camp and then Rachel wanted to eat..so I took her to eat and jon came with..i kept waiting for the kids camp to call on becca..but they didn’t! SO NICE!! We then went to a show..then all of a sudden rachels ear started hurting again..so her and I went down to the infirmary and the doc gave us some ear drops for like swimmers ear..i think she has more then “swimmers ear” so I’ll bring her back down tomorrow to have him look at it- the facility was closed..Todd gave her a blessing – and 10 minutes later she said her ear “had popped” and felt better..so well see how it goes thru the nite..so then I picked the 3 girls back up from kids camp and put them all into bed…then jon came to bed..then I went up and played settlers with some of the family..i lost BOTH games..not good!
So all in all it was a better day..i was REALLY bummed I didn’t get to go with the girls to the beach..tomorrow is belize..and its mainly shopping..so we’ll see what happens..i thought that’s what today was..i guess Kellie had monkeys climb all over her-GROSS! And Kelly and Aden zipped down a mountain- FUN! And everyone else hung out at the tropical beach…
Its been CRAZY lightening storms out here –and lots of thunder too..well anyway –its late and I need to get to bed…today was much better then the past few days..i feel bad asking for help from the family..because they are all on vacation too..or have their own kids to worry about..Robert and Sandra have been really helpful…its really hard to hear about all the awesome things they all did..while me and jon just look at eachother like..wow we just sat on the deck and did nothing..but at this point..atleast we got to sit together on the deck!! Even if it was for only 15 minutes..it was nice..we felt normal for those 15 minutes…its just so hard to find a normal right now…how does a 31 year old mother of 4 girls try to find a normal with someone who seems like they are 50 years older…its just weird and hard to explain..i love to see jon around his brothers—because its then he comes alive..and I miss that terribly..i miss jon terribly..
Well I didn’t cry today and I don’t want to start now! Ill end up with puffy eyes in the morning!!!! So time to hit the sack and start another long day – thanks for the emails!!!! I SOO appreciate it- thank you!!

Sorry-

Sorry i havent written - im paying 75 cents PER MINUTE to do this - so i have to be quick! i type it all in word doc then copy and paste it here- anyway - its 3 days worth so make sure you have time to read!!!!

Sunday

Today is Sunday now. We are so backwards on our time change! Kim had come to do jons 4am cath and meds, only to realize it was 7am and time to get going!! YIKES! So we all scrambled our things together and headed downstairs for some quick breakfast before it closed. We then got ALLL of our luggage and got it downstairs back into the 3 vans, cramed ourselves in and off we went to the Miami dock. It was CRAZY tropical rain storm – well maybe not crazy to the locals but crazy for someone who lives in Riverside and hardly see’s rain pour down – so much so that people literally had pulled over off the frwy’s to “wait it out”..while our vans kept going – SCARY!!! But soon enough we had passed thru the little storm and got to the dock where it was just sprinkling/mistyness…we then unloaded ALL our luggage- which his TONS for 33 people! And then headed into the doors to check into the ship..since jon was special, we got to go thru the VIP line..the only thing is..ONLY me and jon were suppose to go thru the line, but we managed to get all 33 of us in there- it was hilarious..they were super cool though and we’re way nice to all of us – so it was great- I think they saw all the kids and would rather get us all in then listen to 15 kids complain about the lines!!!! Everyone thanked jon when they reached the end after checking in –it was great!
We then got on the boat, checked into our rooms and went to go find some lunch…we all just went about our own ways looking and exploring the ship..the kids were WAY bummed because “camp carnival” didn’t open till tomorrow- BIG UGH for me!!
It was soon time for our family to eat dinner which is every nite at 545pm..we took up 3 HUGE tables in the middle-the waiters said “oh you know those people?” we said ya! Then they said “oh AND you know THOSE people?” we said yep- its all our family!! I think everyone was pretty shocked…
After dinner, we got settled back into our rooms…it was a CRAZY nite for me—I kept thinking – this is WAY more work then a vacation really should be!! I was beginning to second guess why it was exactly I came again??? But I remember the blessing that jons father gave me which stated” this vacation is for the family and remember its to enjoy and have fun and build memories that will last forever”..i keep saying that in my mind when things are out of control and I just want to go hide in my room and cry…the first day and nite was REALLLLY super hard on me…to be a single parent is very difficult, its so nice to be able to say to your spouse- here take this child I’ll go get the rest..but I have no one to do that with..so its difficult..but im trying to keep my cool and not break down..because I had kids in all different rooms, I had to keep running back and forth to check on them and what not, I think I went to sleep around midnite, then kim came in for jons cath and then I did the 4am one and then kim was in again at 7am..so needless to say I didn’t get much sleep Monday night!! It was a crazy day and nite- but we managed to survive day one – jon did really well throughout the day – so that was wonderful! Here’s hope that tomorrow is better then today!!


Monday

Today is Monday. What a nite! I guess I wrote about that in my previous post. We got up for the bowel program, I had becca and anna RIGHT underneath me thru the whole process which was difficult…but we just did what we had to do. Jon had a good program so I was REALLY happy about that. Then we got him showered, again becca and anna are right underneath me again-but we did our best. Jon passed out about 2-3 times during this process- which is why there typically needs to always be two people when we do this..he came too each time we did what we needed to do – which is tip him WAY back and get his feet WAY up..We then got him back in bed- I quickly got dressed and got the other two girls dressed while kim got jon dressed. I took the 2 small girls downstairs to get fruit real quick for breakfast- then dropped them off at camp carnival. I had to be back soon to pick them both up. I then came back to check on jon –he was still getting ready – so then I ran down to get Rachel and sarah up and ready for the day and took them down to get breakfast- only the breakfast line was ENDING and the lunch one beginning!! YIKES! So I grabbed 2 plates along with theirs and got a couple egg omletes and fruit and bacon for me, kim and jon knowing they wouldn’t make it for breakfast..we then just took all our plates up to jons room and ate together..poor sarah..she got some cereal and milk..only she said “oh mom this florida milks is GROSS!” I said- they don’t have “florida milk” its all the same – she said “no way – this is really gross!” so I tried it..and it was REALLY SPOILED!! It really tasted like throw up- it was so bad!!! I then hurried and ate and ran back upstairs again to get them signed into camp carnival. Then I ran back downstairs to check on jon-kim was able to hop in the shower and then start feeding him breakfast. Poor kim I felt bad- she’s not a mushrooms kinda gal – so she wasn’t too interested in the omlete- but was really grateful I attempted to get her something- poor girl! It was then time to get the girls all out of camp and I came and put becca down for a nap—she was just cranky as EVER – so jon said ‘lets just put her down” so I did- and she slept CLEAR till 430!!!! So I put becca down – then grabbed my swim suit and the girls and we headed to the pools..which were SOOOOO crowded!! Jon even managed to come for a few minutes- he stayed in the shade…poor guy- he looked so quiet and just sitting there…I felt bad..i didn’t know what he was thinking..i could only imagine..not quite how we pictured this fabulous vacation – but what do you do – you just keep going and make the best of what you have ..the girls went down this big swirly slide with all their cousins..and then it was time already and hour later to get them back into their rooms, dried off and ready to go back to camp carnival..so I got everyone ready-checked on becca who was still sleeping and dropped everyone back off at the camp thing..i then came down stairs to check on jon …he was pretty tired…we decided to go grab some late lunch since kim hadn’t even eaten yet and dinner was not for a couple of hours…by that time lunch was over and getting cleaned up –we missed it AGAIN by 5 minutes- RGHGHHG…we managed to find some pizza…so we just had some of that..we then took jon outside to sit with his dad and some family..by that time again it was time to get the girls for an hour because camp was closed for an hour..so I raced back to get everyone picked up..checked on becca who was STILL sleeping..so me and the girls found some ice cream and we ate that and waited for the hour to go by..jon went back into his room to rest before the formal dinner…I then came to check on jon..and kim had becca and changed her diaper for me- so she was ready to go to camp carnival with the other 3 girls..so then back upstairs again to get them all back in…this time it was 5pm and they could all stay till 10pm..WHOOO HOO!!! My FIRST real break!! So I got everyone signed in and away they went – I then rushed back downstairs to change into my black dress I wore for marks wedding and helped kim get jon dressed just into a white shirt and tie and we threw a black blanket over his legs! It worked! We then rushed down to our dinner table..we are suppose to eat evey nite at 545pm..we got there about 6pm and all the kids were gone-it was just the adults- so it was fun..
We then took jon back up to the room and got him into bed to rest from the past few days..he was really wiped out- he has no pain..just this time change and little sleep is hard on him..he is just very quite…
I then changed out of my black dress and into my workout clothes to go run – this was my goal – to be able to run 2 miles around the ship track – and I did! It was SUPER hard though!!! I saw the sign and it said 9 laps is 1 mile = OH MAN!!! And I usually do 1.4 miles of walking BEFORE I do my 2 miles of running – so that’s like 32 laps!!! I did my best..i kept losing track of which number I was on – did I just finish lap 12 or just start lap 12 –ahhhhh!!! The boat was nice to run on..it was super dark –except for all the boat lights were lit up everywhere- so it was REALLY bright on the boat-but dark outside and on the water – if that makes sense…there were tons of people out and lots of walkers, runners and crawlers- which is probably what I was! It was VERYYY windy and REALLLYYYY muggy and hot- kind of a weird mixture!! But I did it nonetheless and im super excited that I achieved this small goal I set for myself! I feel like I tend to do SO much for everyone else and nothing for myself – so this was something I did for myself and im glad I made it!!!
I then got paged by the camp carnival phone to go get becca..she was ready to go..anna was totally asleep on the floor..so I took becca up- changed her clothes and got her into bed- they had actually changed her diaper FOR ME! SO NICE! Then I got her into bed- back upstairs (2 flights of stairs) to get anna nd got her down into our room for bed, checked on jon in the room then back up again to get sarah and Rachel and then took them all the way down to their rooms, got them settled in for the nite, went past becca’s room with kim – she was out for the nite and came back to our room where I checked on anna and jon who were both asleep – so I decided to take my shower and got ready for the nite. I read on a paper that it says to move your clock back one hour- MY FAVORITE THING ive heard all day!!! That will help SO MUCH!!!
So today was definitely a better day for me…tired for jon though…and the girls had TONS of fun…tomorrow camp carnival starts up early at 7am! Then they are in it all day till about 3pm then they go back at 4 or 5pm till all nite again if you want them too..the kids LOVE the carnival thing- my kids are always so bummed when I have to pick them up- which makes it nice!!! We should be going to the cayman islands- I think we swim with the sting rays- NO THANKS for me- so the girls will have to go with some brave aunts and uncles – which im finding its hard to find those!??!?!? Well have to see what happens…I think jon will most likely stay here on board the ship and relax- there are a few ports he cant get out onto and so he’ll just be here with kim…
Well its now time to get him cathd again so we can all sleep…Robert and Sandra are going to come up and get the 2 small girls so that me and kim can do the bowel program without little girls underneath us- that will be SUCH a huge help! They’ll get them dressed and fed and off to camp carnival – SO NICE!!!

TUESDAY

So today is now Tuesday. It was a rough nite for me. I felt like I was up a lot with jon- him being either too cold, or too hot, or it was time to cath or this or that..anyway – I woke up not in the best mood…sandra came and got becca out of her room. Anna was still sleeping as well as I was. Kim just came in and did her thing and left to come back again. I was then up 30 minutes later getting things together..jon had a successful bowel program despite passing out about 5-6 times!! He spent most of his day in bed resting. I quickly got things together and headed down to get ready to port to the Cayman Islands. Once ALLL the way down there I realized I didn’t have rebecca’s ship card so I had to come all the way back up and search for it- UGHHGHG!! I did manage to find it- we made it onto the porting ship and made it to the destination. I wasn’t too impressed with Cayman Island – I thought it would be some tropical paradise- it was more of a remodel in the works type place- the weather is SO HOT and HUMID and muggy- it makes it pretty miserable…we all split up- I took the 2 small girls to Seven Mile beach – it was a 5 dollar per person taxi ride to go 2 miles..we got there and I rented a couple of pails and shovels and we hung out there- the sand was white and SUPER soft and the water was REALLY clear- like post card kind of clear blue – it was awesome!! We spent 2.5 hours there me and the 2 small girls..mostly in the water because it was SO dang hot!! We then left and headed back to the meeting spot- I was really ready to go – handling 2 small kids by myself is rough –especially in this weather!! They were getting tired- me and anna hadn’t even eaten anything all day- and becca was done with the beach..we got back to where we port back on- I decided to just leave early and use the walkie talkie to let them know I had left- but AGAIN realized I now didn’t have anna’s card- grandpa had it- so we sat and waited for them for 45 minutes. Then we waited another 45 minutes till I decided to get in line..to wait another 40 minutes in the line to port..i made it to the front- Kelly and Kristi joined me and as we got to the front the rest of the family showed and hopped in line with us…so we all went back to the main ship together…
We came back and jon was still in his bed just resting for the day…I got us changed..Rachel and sarah did their own thing.. I had to wait around for 2 hours before the kids could go back to kids club camp thing..so I ordered room service for me and the 2 small girls..then it came 30 minutes later- we ate and I had another hour to kill..so we walked around the ship..then it was finally time to check them in…
I got them all checked in and I headed straight downstairs to go to bed!!! I didn’t want to go to dinner or have to talk to anyone- because I was on the verge of a breakdown again..so I came to my room and locked it basically!! I slept for 10 minutes before the camp called saying becca was crying..i went up – got becca and put her to bed for the nite..then came back into my room to sleep – I slept about 2 hours in and out..and then I got back up and found myself some dinner and then it was time to pick up the girls – I then took them over to karokee – they were too embarrassed and shy to sing! CRAZY! So I went up and sang – then we left and I put them to bed.
So as you can see- this is more work then it is play for me…there are times I wish I could just go home..but im trying my best to be happy and have TONSSSSSSSSSSSSSSS and TONSSSSSSSSSSSSSS of patience…I think my problem is lack of sleep, dealing with 4 kids, and working with jon…I didn’t think it would be this hard- but its twice as hard..im really hoping tomorrow is a little better- I don’t think I’ll go off the ship – were going to Honduras..i’ll have to see whats going on – but I may just keep us all here since everyone will be gone – we’ll let the 2 older ones go with family and keep the 2 younger ones here with me..we’ll see…
I think jons doing well – his bowel programs are right on target – his pain is good – he’s just either really cold or really hot…but all and all he’s doing good..
Well its 930 cali time and 1130 or 1230 ship time – so either way im going to bed!!

We made it!

Well everyone - we made it!! We managed to get everything packed and into our truck..its a GOOD thing the older girls went with grandpa and grandma because we had SO MUCH luggage they wouldnt have fit! We left around 830am and made it to LAX 930am..most everyone was already at the Delta SkyCab waiting for us-(yes we all went on the same flight together- all 33 of us- CRAZY!)- we pulled up and ALLL the kids and everyone started waving - everyone turned around like it was a celebrity or something!! jon kept saying - tell them to stop--people are going to be SO let down when the see its just me!!!
Jon made it thru security - he had to sit there for a while and get checked out - poor guy! but he passed as well as the rest of us..
We then got boarded on the plane-- it was a delta song flight so it had satellite tv and music and movies -it was GREAT!! the kids were TOTALLY entertained!!! becca sat in her carseat the WHOLE time -it was SO nice!!she really was nervous about going up and coming back down..she wanted me to hold her hand - it was so great!
oh i had to lift jon along with kim to get him in and out of his plane chair- it wasnt one of my usual lifts- it was a "lets just get him in the best we can" lift! but hey it worked! Kim stayed with him, while i stayed at the BACK of the plane with all the girls..so it worked out great...jons family was SOOOOooOOO helpful it was just so great!!
We then landed and took 3 HUGE vans to the hotel, it was a motel 6 --at first they didnt have our room reservation, and then they had realized it was under the "the southern harley bikers club" - WHAT THE HECK??? and all the rooms had smoke and a few of the 9 didnt even have electricity -LOVELY! so we called 7 taxis to come get us and we found 9 rooms over at embassy suites- SO NICE!!!
we all got checked into our rooms, pizza was in room 322 and luggage was in room 317- it was great! i gave the girls a bath and they brought in a crib for becca, the rooms are kinds that have a living room - so becca slept in that room and me and the girls in the other room...jon and seth are sharing his room..kim has been AWESOME!! im SOOO glad she came- she's just done everything so that i can do all i can with the girls, and jons family knows to just pick up where i need help without asking- they just do it- its SOO nice and helpful!!
we unpacked jons stuff- he did GREAT on the plane and getting here- were so relieved, his meds have all been on time and his cathing so thats been good..we got him in his room and realized we could blow up his special matress because i FORGOT the cord - darnt!!! so we called the front desk and they had the PERFECT cord for it- he said we could just keep it if we put in a nice word about him!! SO NICE!!!
so right now its 930 cali time and 1230AM florida time..i need to get to bed or rather i need to turn this off so my other 3 girls will stop talking and go to bed- i LOVEEEEE that we are here- im so happy and SOOO grateful that its turning out -- im SOOO grateful i get to spend time doing things with the girls!! my girls have been SOOOO good on this trip so far- we're so blessed and so thankful!!
Tomorrow we get up and have breakfast, and then the vans will be here at 11am to take us over to the ship by 12 noon..
Thanks for your continued prayers and for the strength youve given jon to come be part of our family - i cant believe there are 33 of us here and 15 of those are grandkids- isnt family awesome!!!

Bon Voyage!!!

Well the time has come, the things are packed, and the house is asleep and still...except for me of course! With the help of sandra, robert, chad, and kelly i managed to get all 6 of us packed and ready to go..the santo's came to help bath my little 2 girls and get things into the truck..
i cant believe its hear ALREADY!! Robert gave jon a blessing and me one as well..i find so much strength and comfort in the blessing that was given..i was sad to have missed jons blessing..he said it was just wonderful...
Thank you to all those that have encouraged me to go on this trip and to include jon..he's ready to go..he got his voice activated and head set thing so he can do what he wants on his laptop - he'll be a happy camper! he said he probably wont be doing tons of stuff on the cruise- but to be with his ENTIRE family--this is something that will never ever happen again and he's so blessed to be in a position to be able to do this-- even if its going to be hard..
Pray that all goes well, that this brings us a fresh hope for what is possible, that life does exist beyond medication, cathing, pressure releases etc..
as i prepared for this trip today..i thought to myself..its really wierd and sad to be doing it all myself..i am sad that jon is not the same..he's still jon, but different i suppose..he's just so much more quieter..he just seems 50 years older to me..i look forward to spending time with him..i miss him like CRAZY MAD! this really is like a death...he's still with me, but he's not the same..but im SOOOOOOo thankful i have him regardless of what or who or how he is..i have to remember its not always going to be like this..in time and more months..he'll be stronger and more awake and all those things..it just takes time..im one of those people that does GREAT with time lines..i know i have this many weeks then the next thing will happen..this is insane that i have no time line whatsoever...
well im falling asleep here as i should be! i will write tomorrow and let everyone know how the 4 hour and 44 minute airplane trip goes..kinda nervous! not for jon, but for the 4 girls...thats a longgg ride!!
till the next time - i'll be writing to you from Florida!

CRAZY MAD BUSY DAY!!!

Well its obvious that today is going to be CRAZY!!! im working like a mad woman trying to get it all together over here...
jon slept well..he's a little nauseated but doing well...we're in the middle of his bowel program..

I will have to try the college..i dont know who would be able to do it at a college for 24 hours if they are in school..but i guess its worth a try..you have to be careful placing ad's in the newspaper because you dont know what kind of people start coming thru your door wanting to work only to take advantage of your stuff!! We do have something thru the church employment -but that sadly has brought up nothing..very frustrating...

well i need to keep things going with jon and packing..i will have internet access on the ship..so i will continue to report from there- wish us luck and pray that all goes well!!

one of those days for me..

its one of those days for me where nothing is working out..besides the wheelchair issue..im now trying to figure out jons care..this is just SOOO expensive and we havent seen or heard of ANYTHING regarding this issue...we let go the "weekend" person..she was SO overbearing and swore all the time, it was just not good...so the agency is looking for another weekend person...

essentially here are the hours jon needs serious medical procedures and care..

12am-12:30am : cathing, rotate
4am-4:30am : cathing, rotate, meds
8am-12pm : cathing, rotate, breakfast, meds, bowel program
8pm-10pm : bath/shower, back into bed, cathing, meds, prepare for bed

(not to mention all the care that I already do during the day by myself)

Right now, my caregivers are only doing the 12am-1230am thing, the 4am-430am thing, then im up at 8-9am cathing and feeding breakfast, then they come down around 10am to start his bowel program and finally finish at 12pm, then they go sleep from 12pm -4 or 5pm, while im doing his 4pm cath and making all my girls stay quiet all day, then they dont do anything with him until he gets back in bed around 8pm! im doing everything else!! they never give him a bed bath or shower unless i MAKE them do it..it's just frustrating!! i have a hard time paying them 30 dollars an hour for the ACTUAL hours they are working--which is ONLY 4 hours!!!!!!! im doing everything else...anyway - can you tell im bugged!!???

SO essentially i need to figure something else out..if i paid someone 15 bucks for their "4 hour minimum" that means i'd have to pay someone for the 8am-12pm shift AND the 8pm-12am shift so thats $120 right there already..which is frustrating since they REALLY ONLY work a total of 3 out of the 8 hours..

so if anyone understands my dilema and how they can help PLEASE HELP!! i cant do this all alone, this over time will harm our relationship, marriage, family life, etc..this isnt something i want to tackle on my own and hope for the best..i know my limits and my strength and ive already had a "burnt out" from 2 days straight of jons care..so if anyone has any ideas..please post them or email me..im desperate!

wheelchair issues...

well after talking to people..it looks like people were giving us WRONG information, stating that the insurance was paying for the entire 10k+ cost of the wheelchair, they say that the insurance is only paying like 2k of it- we have the rest out of pocket....so they are calling around to see who said what and what exactly is going on...SO BUGGED!!! we should have already had the chair by now...oh well..the waiting game continues..

good morning...

jon slept well thru the nite..he said he's not in pain like he was yesterday and he feels like the baclofen is really working now..he said he was pretty sick to his stomach this am..i told him probably cuz he didnt eat any dinner!! he ate lunch around 2-3pm..and then was so busy with dad..i fed him his breakfast, he took his pills and now were in the middle of his bowel program...so we'll see how the rest of the day goes...
he asked me this morning "are you excited for the cruise?!" i said.."well sort of..i will be TOTALLY excited if you come!"..he said "oh honey im going to go!!" so hopefully thats still the plan..his mindset is to come and be with all of his family..i pray that his body works properly in all areas so that he can..

i ran my 2 miles again yesterday- i cant believe i can do that much now!! jons so proud of me too!!

well today scott is coming up- they will be doing addresses for his magazine that is going out - jon is SOO happy to have that out of the way now..his next focus will be making sure that goes thru, preparing his 50 minute presentation for his August Seminar, getting his materials ready for his table layout at the seminar, writing his next article, finding information for his next article, sending out the mass email for his subscription price release..SO MUCH!!

today were going to celebrate becca's bday since her real bday is on sunday and that will be SUCH a crazy day as is..my friend wendy and her mom again sent all her presents - WHAT a huge relief!! thank you guys!!!

well back to the bowel program...

stayed in the wheelchair till 8pm..

well jon did good today..robert stayed with him all day today..they even made it to the mail box down our street! whoo hoo!!
robert helped jon order a headphone and i think a software program that will enable jon to utilize his computer so he can do it himself vs rely on all of us to type and do things for him..
he got back into his bed around 8pm..he's getting settled in for the nite..all of my girls went to bed early at 8pm tonite- too many late nites for the summer and playing hard during the day- -they were kinda whiny and cranky..

i got started on packing..ive got all our clothes folded and ready to go - only now we have no clothes to wear for the next few days!! hahah celesta is going to come over tomorrow nite so i can hit a few places to pick up bug spray and a couple pairs of shorts for me since i own one pair right now...by friday i should be ready to go and that will be the day that i get jon ready and packed to go as well..

well thats about it - i didnt want to bug jon about his leg trick again..hes pretty tired so im letting him sleep..its SO nice to have family members here to help keep his mind on other things other then pain - it really does make a difference!!

continue to pray for those things that we asked last nite..were so grateful for so many people that care about us and have a desire to see this thing thru! thank you so much!!

Made it to the Wheelchair..

well jon had a great bowel program..GOOD NEWS in our home!!! he made it into his wheelchair today too..we said lets try it for an hour or so and see how he does..he's been passing out..so we just watch him..
he's having some pain..and we think the baclofen is making it a little hard on him..so were just going thru the day to see how it ends..

i cried, i prayed, HE MOVED!!!!!!!!!

So last nite we finished everything up, i went online and read more info on SCI patients... i read that some UTI's can cause your abdomen and legs to have muscle spasms- so im HOPING thats why he's had those bad lately is due to the bad UTI!!!
i finally got into bed by 1130pm..i saw our wedding picture again where he was dancing with me...i cried for a while...quietly..because honestly i just miss him..then i prayed and prayed and cried and prayed and prayed...then i fell asleep exhausted from crying and praying...

this am i got up and started my usual routine of cathing jon, preparing his breakfast, rotating him, all the usual things..then he asked me to come in and "see something"...so i walked in..every morning like ive said before he does "exercises"..so this am he was doing his thing and he had me look at the length of his right leg down at his feet...so i did....HE MOVED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
i couldnt believe it!!!!!!!!!!!!!! he can move JUST BARELY but visibly enough his right leg inward!!!!!!!!!!! as you can tell im WAY EXCITED!!!!!!!!!!!!! everytime, i feel like giving up...Heavenly Father BLESSES me with a HUGE miracle in the SMALLEST degree!!!! im sooooooo thankful - it has boosted our spirits to help us to keep going...to remember the priesthood blessing that was given "your body will be restored"...we have to just keep enduring...and stay humble to receive such miraculous blessings such as this...im so thankful!! i ran upstairs and thanked my Heavenly Father for his tiny miracle...how wonderful to relish and enjoy such wonderful moments in our trials!!!!!!

sadly..jon seems to be in a good amount of pain..he's not sure if he'll get out of his bed even today...he feels that its because he's not drinking enough and has his UTI and was exposed to too much sun and not having enough liquid...so well see how the rest of the day turns out -- which this new "trick" he's sure got a HUGE smile on his face..and being around his dad will help to encourage him!!!

THANK YOU for your prayers on our behalf - look AGAIN what WE TOGETHER HAVE ALL DONE!!!!!!!!!!! isnt life awesome!!!

tuesday nite

Jons been in cold/hot pain..parts of his body are freezing and parts are hot..he didnt take his 4pm meds till 6pm due to the doctors and he was SO tired when he got home he slept in his chair..so hopefully its just because of that..

we did our first "flushed cath" procedure..i hope it helps his UTI..

Jon has been asked to speak at a GDC convention seminar thing on August 14th. BIG NEWS and HUGE recognition for him! YA!!! He had to write a 50 word bio and a 50 word description of his pressentation..it took us about 2 hours to do this..but its done now and we got it all faxed and emailed back to the people...WHEW! So now he has until July 24th to have it pretty much put together for a review, then he'll deliver august 14th after the Keynote speaker..hes VERY VERY excited about this..we also will put some business money into sponsoring this event so thats good news as well..

I feel like the days go by SO FAST..EVERYTHING takes SOOO long..cathing him is a 15 minute project, and now that we have to flush him with medicine..its more like 30 minutes...and then the pressure releases every 30 minutes that take 10-15 minutes, feeding him takes a while then its already time for another pressure release and before we know it its time for meds..ahhhhh...its now almost 11pm and im SO tired..were trying to finish him up for the nite..

i hope now people are beginning to see why jon is LITERALLY day by day..i cant really plan for anything..which makes life SO hard...

oh ya i called on the wheelchair because we were told when we left loma linda that it was going to take about 6 weeks to complete the chair...so i waited and here it is the 6 week mark..so i called the chair company - and they made the comment were waiting for an autho from insurance..so i call our case manager..they say they are waiting for a fax to come..anyway - come to find out NOBODY DID ANYTHING!!! rghghhghg..i was SO mad!! the chair person i essentially said "so what your telling me is you JUST NOW got your fax over to the insurance and they JUST NOW faxed it back so your JUST NOW going to start to put the order in so NOW its ANOTHER 6 weeks???" she said..essentially. i said "that is TOTALLY unnacceptable!" i asked her "so who's desk was it sitting on, who didnt do ANYTHING about it or follow up on it? i didnt realize that was the CUSTOMER's job!" she said, "well i dont know what your looking for?" i said "well for starters how about an im sorry!? my husband has been out 6 weeks, we were EXPECTING his chair to be here any day, he's been using this loaner chair thats ruining his back, not his size, totally uncomfortable, giving him pressure sores-this is all just really unnacceptable-so now we have to wait ANOTHER 6 weeks - is that what your telling me at this point?"..she said "well i can call the order into the manufacturer and put a rush on it and ask how long it i will take"..anyway she said "well i dont know what else you want...you can talk to my manager" i said "i would"..then she said she'd call me back which OF COURSE NEVER HAPPENED...SO LAME!! i cant BELEIVE how MUCH i have had to STAY ON TOP of EVERYTHING or nothing would get done...its totally amazing..you should see my files near the meds, i have 15 of them, social security, state disability, medical, insurance, receipts, meds, wheelchair company, on and on and on..im constantly going thru them to make sure im on top of it all..and by the time i can start making phone calls on anything its 12 when im done with jons bowel program..then OF COURSE everyone is out to lunch!! so then i wait till 1pm and ive got 4 girls under my feet, then by the time i remember its 5pm again..around and around i go...

alright- well had my rant for the day i guess- WHEW!!

tonite at dinner, sarah asked me while i was feeding jon, "mom is daddy going to die" i said "no-not yet"..then she asked "will he walk again before he dies?" i said "i dont know honey- we never know when we will die - BUT if daddy does die- do you know where he'll be?" she said "in the grave yard??" i said "well ya, but where else?" she said "in heaven and in our heart?" i said "yes and he'll be waiting for us when we die and go to heaven"
i couldnt believe she asked me that question???? is she worried about that??? when i think that the average life span of a quadrapalegic is 10 years..these kinds of conversations scare me...i think about it - but i dont think about it...if that makes sense...its not something i want to dwell on..i can do what i can to be prepared..which is why we have a trust and will..but i cant dwell on it..im enjoying and relishing every day that jon is doing good...im learning SO MUCH about opposition these days..im so thankful he has good days..because i cant imagine having a hard day again and again and again..

well please pray that this "flushing system" works for his UTI..we dont really want to do the IV thing...please pray that his muscle spasms will decrease and the baclofen will come into effect..please pray that his bowels will function properly...please pray that his concentration and focus will increase..it takes him SOOO much time to sit and have someone type something out..pray that his spirit will remain strong...and that the "old jon" will return...its very hard for me to watch my YOUNG 33 year old husband suddenly turn into an 80 year old man..he's taking 30+ pills a day, he's in a wheelchair slouched over, he's quiet, he doesnt eat a lot, he sleeps a ton...anyway - this has been incredibly difficult to go thru..and im SOOO thankful to have everyone praying for us...please pray for these things..i know that the power of prayer works..its amazing that jon is where he is after ONLY 3 months if we really think about it!!! thats awesome isnt it!??

Tuesday afternoon...

Well, back from the doctors..jon has a bad UTI..he will have to flushed out during a cath procedure..if this doesnt work then he'll have to use an IV to treat it..there's an 80% chance that it will work..we go back in 2 weeks to see how it went..so pray it works!!

i dont have a nurse here till 8pm tonite..so im doing a lot..thankfully katie and seth are here helpign me and jon out with a ton of things...

well back to our crazy life!!

oh and carol didnt come...so i'll have to track her number down again..BUMMER!

tuesday afternoon

well its now already 130pm..carol is on her way HOPEFULLY..we need to leave here soon to head for his urologist appt which i think is on Day Street...i better check on that!!
jon says the baclofen seems to be working and he's adding one half every other time..so its not too much on his system...
i FINALLY got us registered for the cruise- WHAT an ordeal!!!! so thats scratched off my list, so now its the adventure of packing 4 pages worth of stuff..UGH...
well sorry this is so short..but im CRAZY mad busy!!

monday evening..

well the rest of the day was pretty productive..i called on the wheelchair to find out it POSSIBLY hasnt even been STARTED YET!!! SO BUGGED!!! anyway, after 5 phone calls its on someones desk...who's on "vacation"..so ill have to stay on top of that one like EVERYTHING else...

i got the plans for the elevator lift..we have all the neighbors that needed to sign it except for 2...which 2 out of 7 isnt bad! so i just have those 2 left to sign, then send it over to the HOA committee to get it approved THEN we can send that to the city and THEN we can get it started ..

Jon was pretty quiet today..he's having STRONG muscle spasms today..ones that go into his stomach and chest making it hard to breath..we're going to up the baclofen to 15mg instead of 10...20 is the hightest he can go..and see if that helps to calm those down...hopefully its because things are coming back for him...

i talked to the cruise company and relieved a lot of our nervousness about going..so that was very helpful for us!! if jon doesnt go...then Kims family will stay at our house and Kim will be his nurse 24 hrs the time were gone...the ward will continue to bring meals next week while she'll be working so hard for him..hopefully he's able to go..but i worked super hard today to get next week figured out and organized incase he didnt come..ill probably just be mopey the whole time im gone..but my girls deserve a happy mom and some time spent with them..at this point, i guess i feel like people are going to judge me either way and i shouldnt care or worry about how they feel if i go or dont go..but its a constant battle for me to feel like i can do anything anymore...its not fun..but something im working on..

sometimes i go to bed and think...man i wish some days i didnt have to wake up! cuz its gonna be hard!! but i go to bed and manage to get up anyway..i think sleep helps you!! and the hope that it will be better then the day before..even though its CRAZY work all day..

tonite we did our family home evening...i talked about talents and then i picked dad to talk about each girl and what talent he thought they had..it was fun...anna's of course was her "imagination" and how she imagines she's a princess all day everyday - SO FUNNY!! we talked about why we have talents, and that Heavenly Father blessed everyone with atleast ONE talent to help his people on earth and help to build His kingdom. Anyway - it went great and then we gave the kids 2 tiny scoops of ice cream for their "treat"..

I managed to help jon into bed all by myself - which yep i can do! im superwoman but i told jon i think im getting MANLY ARMS!!!!???? yikes!! then i helped him to email a few business people, then i hurried and got kids into bed for the nite and quickly changed so i could go running and relieve some crazy amounts of stress..i ran my 2 miles again..i walke 1.4 and then i run 2...it was great..i didnt think i'd make it ..but i guess i had a lot on my mind and the iPod blaring!!

well i need to hit the sack...hope the doctors appt goes well tomorrow regarding his major UTI..pray that it does and that the UTI gets healed!!

getting stuff done..

well so far its been productive for us..jon had a great bowel program- the things were thankful for!!!! he's been in and out of passing out..so ive been right next to him..he took some constipation liquid and it may have drained him..we'll have to not use so much next time..he's doing better now..just been in his chair sleeping and not doing much..but his pain level is GREAT!!im so happy about that!!!

i have the otehr caretaker carol coming tomorrow around 1pm to meet with me and jon and talk things over..PLEASE keep this in your prayers that i goes well and she's interested and its a good match!!

ive been on the phone ALL day..i talked to the cruise lines about everything regarding jon and got alot answered and figured out about him, there were too many "unknowns" so its nice to get a better idea of what were working with, i need to now call delta airlines and then talk to the van rental company to make sure we can get jon in and out of the rental van etc..

ive made doctors appts, called the insurance, talked to the case manager, called more doctors, straightened out billing, found jons missing chart, left messages etc etc etc..i have to go to all my neighbors and have them sign off so we can put an elevator on to the back of our house so he can start sleeping in our bedroom together once again and take real showers..

i talked to kim about how we'd work things on the cruise if jon goes and how well try to work things out if jon stays..she'll call me back after she talks to her family about it..i will need to arrange for nurses to be here while were gone..

i FOUND OUR PASSPORTS!!!!!!!!!!!!!!!!!!!!!! HUGE accomplishment!! so now i need to go online and register for the cruise using those - SO HAPPY!!

anyway - back to work..

thanks for your prayers...

you all must have prayed extra hard for me last nite- i want to thank you! i truly feel like thats what happened...i actually went to bed at 1030pm last nite which was SO NICE!! i usually dont go till 12 or 1am..then i slept clear thru 7am till the girls came in my room ( i make them do that so the nurse can sleep and they watch tv quietly)..then i got up at 8am to start my round with jon..its now 10am and i got everything done already - ALL BY MYSELF!!! i cath'd him (which means helped him go pee-using equipment...it takes 15 minutes to do this procedure), then fed him breakfast, gave all his meds, brushed his teeth, put deodarant on him, changed his shirt..fed myself breafkast and unloaded and loaded the dishwasher..mind you the NURSE is the one that im PAYING to do all this for me..i dont even know or care anymore what she's doing..the weekend nurse is SOOOO overbearing im kind of done with her..and the week nurse is really lazy..i REALLY need something different over here!!! anyway- in about 10 more minutes i'll start his bowel program...

Jons family does come up here daily..typically getting here around 1230pm..katie and seth are tuesdays, robert is wednesdays, scott is thursdays, and sandra is fridays..i have no help for saturdays or sundays..which is maybe why im so groucy by sunday afternoon/nite time...they have very busy lives..they all work at roberts law office which is mad busy right now..so were very thankful they take a day off and come help me..when they are here i feel HORRIBLY guilty leaving them with jon AND ALL four girls to just "check out" so i tend to just stay home unless i have to go pick up meds at walgreens..its overwhelming for me when im by myself..i cant imagine leaving them with his family when they aren't use to it...the nurse is typically sleeping from 12-4 or 5pm so thats why i have to be home...

well we have no real plans for today...jon has his urologist appt tomorrow for his UTI which apparently is so bad that not even an antibiotic will work..they have to "flush him"..so we'll see what that is all about..right now while im thinking about it im going to call dr. jackson who did the surgery and get him to call us since he forgot 2 weeks ago...after that i'll go thru bills and make sure everything has been paid before we leave for the cruise...i need to go thru my 4 page list of stuff to bring and make sure its all organized again and start packing...

so thank you for your specific prayers on my behalf and thank you to my friends who have all individually emailed me to "check up on me" last nite- i SOOO appreciate my friends..they are everything to me...people i trust...people i care about..people who help me...people who make me laugh...people who pick me up milk without asking me..people who bring me chocolate...people who quietly come to sweep my floors...people who invite my children to their homes to play or to the park...thanks guys..you rock!

one more i forgot..

more photos..

here are some more..

FINALLY photos!!

okay here are some photos- i couldnt pick which ones they were all so good!!

breakdown...

sadly at about 545pm i had a total breakdown, i had a HUGE full day with little sleep saturday, then at 8am jon wanted to get up and go to church so we did that today too..i went upstairs about 230 or 3pm for a nap..but that didnt happen with little kids...becca kept breaking everything, sarah and anna were being loud and laughing constantly - ya know usual kid stuff! anyway - i just couldnt take it anymore, at 545pm i just got in my car and left..i found myself at the santos' home a mess...russell came down and helped with dinner that had been brought- thanks maxine LOVED IT!!!!!! and then he helped to get girls ready for bed..i came home about 830..that time went by so fast! i must have cried a LOT cuz i thought i was only gone an hour!! i kept yawning or crying the whole time i was talking to tracy..and i felt SOOOOOOOOOOO bad because it was fathers day!!!!!! i felt bad for jon, i felt bad for russell since it was his day..anyway- lame...
im home now, i got the kids into bed, i can tell they totally miss me, jon's wondering just what the heck happened- poor guy!! anyway- i just needed to "check out" as i lovingly call it-- i think 2 days straight of doign jon all by myself and four girls put me way way way over the edge..i think im WAY too worried about people judging me..and thats just only adding to the stress...im think im WAY too worried that people feel like i need to have my life normal again..and whats taking so long..i feel like nobody REALLY i mean REALLLLY gets what its like for me and our family..and i think im just burnt out on making it seem like its all okay and under control...i think for the most part it is..and maybe just right now its really hard..i dont know..anyway - thats my ramble for right now!!

and this is more for my own journal- not so much wanting pity from people!! im doing much better now!!

FINALLY the photos!!

possible caretaker!!

PLEASE pray for us right now, i went online just now and located a possible caretaker. Her name is Carol and she's had 20 years of experience. She is about my size and strong - GREAT! She's worked with quadrapalegics as well. I gave her the run down of the schedule i've put together- she kept saying WOW IM SO IMPRESSED that you've been able to do that in just 6 weeks!!! she couldnt believe that i had a system routine somewhat put together - i told her im trying to get my life back together....she asked what we were wanting to pay..i told her we are able to pay 12-1500 per month with weekends off...she asked if i was going thru an agency right now...i said yes we are.. she said "oh then i know EXACTLY what your working with - yikes!!"...she was just so impressed with my positive organized attitude that she said well christina, if jon is anything like you- i can hardly wait to meet him!! i told him he's SUCH a positive guy - he's not grumpy or cranky, he's upbeat, trying to keep his family together, trying to keep his own business going, but our life --its TERRRRRIBLY hard right now and we DESPERATLY need to find a solution to make things a little easier on us...i told her that she'd LOVE jon and he's been in the newspaper if she wanted to look him up online, he's got a HUGE family and MANY friends that love and only what the best for him..anyway - she said she'd come visit with jon to make sure they make a good match and that she felt capable to do all of the things i talked about..and that she'd come meet him in the next 24 hours..

SOOOO PLEASEEEEE pray that they make a good match, that she will want to do this for our family..we SOOOO badly need someone other then these two caretakers we have..paying 5k a month is going to KILL us..and since we get more then $100 a week from SDI, (state disability insurance) BOTH social security AND medical have now denied us...so right now its out of our pocket and the foundation fund...
i keep going back and forth, do i want a housekeeper/nanny to live here and help wiht the house and the kids and i just do everything for jon, or maybe just have someone do it thru the nite time like a 12 hour shift, OR do i just hire someone to do jons care and i do the house and the girls..of course i'd prefer to do the latter because im a wife and mother = not a caretaker!! but maybe i need to do the other..i dont know...when jon is feeling good and meds are working and i can get a break or two from it..its bearable, but when jon is miserable, on the wrong meds, and im constantly being demanded of things...its horrible...not to mention have 4 girls demanding so much from you too--- then go try walking to church or what not with a happy face and smile and not break into a crying fit!! then IF you do happen to take a break, your fearful of SO MUCH judgement by other people thinking, we'll if she has time to do this or that...she doesnt need our help! its a constant fine line i walk everyday..i just want to be normal and like everybody else, i just want to do my own thing and not rely on other people to help me and then judge me about it later...but the truth is..i still need help..and im soooooo thankful that i get help and people still care...
its so crazy that this has happened to my family, when i think if this would have happened to this family or that family..THATS when i truly realize how hard this really is...
well anyway -enough of my rambling..i guess i just wanted to say..that even if it LOOKS Like we have it "all together" we really dont, its 10 times harder once the front door is closed to the outside world..so i guess in a sense im asking..please dont judge me...and please dont assume that everything is rosy at home..because its really not..ask anyone who has been in our home longer then 5 minutes..its STILL very hard...im CONSTANTLY running around the house...it reminds me of a thing rachel was typing on the computer..it said "my name is rachel, i have 3 sisters, an injured dad and a VERY BUSY MOM!!" and that is why i want my family back again so bad..my life was so much easier before this...and yet even though im going thru this...im finding lessons to be learned..as i said before..one of them is judging..we dont always know the "whole story"...

okay now im really done rambling!! so just pray that this new possibilty works out!! and i PROMISE jon and i will be VERY THOROUGHLY with her and make sure she doesnt have any warrants for her arrest and all that good stuff..i know people are always asking us to "make sure" they are okay...i promise you were smart people, and we ALWAYS think of these kinds of things ahead of time and we have 3 lawyers and probably 2 more on the way in the family - so were good!! no messing with the hales!!!

made it to church...

we'll we made it to church..and now i just want to sleep for 4 days and not wake up!!
i didnt think we were going - 9am church is hard to get to...but it was fathers day and jon wanted to go "to atleast take the sacrament" but we were late and missed it anyway..oh well..once there we figured we put so much effort into GETTING there..we mineaswell stay..so we did..
we got home and i made everyone sandwiches for lunch, fed jon, then jon felt like he needed to go to the bathroom, so i ended up doing the bowel program with him ALL WHILE the nurse has been SLEEPING!!! SO BUGS!! she's been asleep since we left for church at 9am...must be nice!
its now 230 and im JUST getting my chance to put my feet up since YESTERDAY..im really tired and need just 15 minutes to catch myself back up..
i thought i could post pics from this laptop..but it looks like i'll have to go downstairs to post them off the main computer system..
i talked to jon about the cruise..i feel like he's doing so much better..considering that he's COMPLETELY OFF that methadone and he's ONLY taking his dilaudid every 6 hours instead of 4 hours is so awesome!! and he HASNT had to take ducolax for 2 weeks now!!!! do you know what that means for us!! just that right there is SOOOOO wonderful!!!! i really feel like the neurontin and not being plugged up is the key to him not having the pain so much...i'd LOVE for him to be completely off the dilaudid..i think thats something worth shooting for..so i'll talk to him again each day and see what we'll plan for the cruise..i cant BELIEVE were leaving saturday - i REALLY dont feel prepared for that at all! first i need to figure out where our passports are..if i cant find those i'll need to make sure i have my birth certificates ready to go..which we can do..then i'll need to pull out my 4 page list of stuff to bring and pack and have at it..
thank you all for your prayers and helping us get thru this..and for right now just helping us day by day and for helping us get thru each week so that our normal will be normal one day..

we made it...

well we made it!!! this am he woke up and had NO breating or chest tightening problems!! SO NICE!! and he was SOOO much more relaxed and calm and not cranky or fidgity about everything-- so wonderful!!
i didnt get to bed till 1am last nite, then i got up at 7am to get things going, we got jon up and going by 8am..then we got out the door by a little before 11am..then i dropped the girls off at my friend shellie nielsons house- THANK YOU SHELLIE!!! then we raced down to the temple where ALL of his family was waiting for our arrival anxious to help..we got him out and inside the temple...we saw dave parker working at the front desk of the temple as you come in to show your recommend..it was great to see him and thank him for letting us utilize his foundation to help our family..we then watched as Mark was sealed to Jennifer today..thats the wonderful thing..in the LDS religion, we believe that marriage is not only till "death do you part" but we believe it is forver, we are sealed on earth AND in Heaven - what an awesome thing!!! what a priviledge and honor it is for me to be sealed to jon, and to know that after this life, if we continue to live righteously ..we will be together forever and in the Celestial Kingdom and that his body will be whole and he'll have no pain...
we then went outside and did all the pictures, sadly all the kids were done having their "photos" taken and so i put them all in the truck -had them change out of their pretty WHITE dresses and into their regular clothes and gave them all snacks i had brought with me for them..then they kept jon around to take more pictures which lasted another hour...he said he was tired of "always being in the front" for all the photos..that would be annoying!! poor guy..i felt so bad...
then we got him back into the car and stopped off at wendy's drive thru and headed to my parents house..we got jon on a couch and i got him comfy to fall asleep for an hour..my girls went swimming with uncle brian, jessica and melissa..becca went down for her nap at the same time..it was SO NICE!! then we all got ourselves put back in wedding attire and headed off to the hales for the open house..
the open house went great- jon visited with TONS of people and enjoyed himself..he said he didnt really have pain today all things considered! which is GREAT that he didnt have much and had NO methadone!!! i really feel that the nuerontin is what helps him with his pain..
we then finished with the open house and left at 930pm..got home a little after 10pm and got everyone into bed...the caretaker on the weekends is a big talker, so jon asked that i tell her that he just wants to go to bed, and to not talk to him, and just do what needs to be done so he can get some sleep..jon is WAY TOO NICE and would have just talked to her..so im glad he asked me to do that..i think he's done with everything and is sleeping..
well thank you for all your prayers for us this day - we did it!!
i had downloaded the pictures of the day..but i will have to post them in the morning..

friday nite...

tonite we got everyone bathed and showered and i spent 2 hours getting the truck packed and getting everything we'd need for tomorrow..jon was able to get a bed bath and rest...he asked me to call someone for a blessing..it was 10pm and he felt HORRIBLE and said it was too late..i told him not to worry- it'll be okay..so i called his brother chad who lives in danville, ca...his family is staying with kelly's family in riverside- so he should be here shortly..jon will be so surprised to see that chad is the one giving him the blessing..
he is really nervous about being so agitated...as i was getting stuff together for him - his suit for the wedding..i was holding his hand and he asked "will i be okay?" i lost it..i told him i'd take care of him..then i walked out and cried...that is SOOO hard for me..its one thing when its one of your children and they ask you that..but when its your grown husband who protects you..thats a completely different story...
well chad is now here..and jon is so excited to see his older brother..there's nothing like your older brother...
lisa came by and brought the dresses- i LOVEEEEEEEEEEEEEEEEEE them!!! im SOOO excited!!!!!!!!! thank you sooooo much!!!!!!!!!!! i cant believe someone would do that for me-- im soooo grateful!!!
well today has been emotional for me...as i drove home from my errands i though..what would we be doing if jon was not in his current condition..we'd be down in OC at the hales home helping to decorate..i usually am SO good about helping out with things like that..but i couldnt..thats hard for me..jon would have loved to help dad move big furniture and work out on the backyard with him...were both the kind of people that just get in there and start working..and typically jons in his nice kahkis which use to drive me crazy!! everything is so different now..it makes me sad sometimes..when people say "you'll walk again" its like i cant even imagine what he'll look like walking again..last nite i heard something near the stairs..it reminded me of jons ankle that would crack when he'd walk..its little things like that -that will set you off...then again tonite..connie hemmed jons nice new suit pants..and i put his suit together, and i thought..jon was going to look SO good in his suit when jons dad got it for him...its just wierd that now its not quite what we imagined...then that set me off again...then later i was looking for garments for him - it will be the first time in 3 months he's had them on..my mom had boughten him nice new perfect white ones..so i got those ready and i found a deodorant that he usually wears...i opened it up and smelt it...it was totally jon...then it really hit me hard...so i took it RIGHT into his room and said "your going to start wearing this again- no more of this right guard stuff- i cant stand that stuff anyway!"

well sorry this post is so sad...its after midnite now..i have such a full day and were all pretty nervous about how its all going to play..the biggest thing is time..it takes SOOO much time to do just about anything..so if were late getting the sealing- just keep waiting!!

we ask that you pray for jon, that he will be less agitated tomorrow, that coming off the methadone was the right choice, he only took 1/2 the pill today..and im not sure if he'll do 1/2 again or just forgo it all together...when his chest tightens and he's agitated, he feels like he cant breathe...and THEN not being able to move..its so closterphobic for him...i cant even imagine what thats like...so please pray that all goes well for him tomorrow..that he doesnt pass out while driving..that he stays comfortable thru the day...that my girls behave and do well..and we return home safely to our happy home...thank you for all the prayers and service everyone provides on our behalf...what an awesome feeling it is for us to know that as a team were all helping and going to see jon walk again..

friday...

jon did well thru the nite..he woke up terribly anxious and has been so ALL day today..he had a good bowel program and im SOOO happy he's yet to have to take the ducolax!!!
this anxious thing can be so terrible..he's figity about EVERYTHING!! he gets to where his chest gets tight and he feels like he cant breathe...he spent 2 hours working with sheldon and then 2 hours with the byers..i had TONS of errands to run and since i cant ever get out - i saved 3 hours worth all today..im so grateful for those that helped our family! my girls hung out at amy nottinghams all day - they had a lot of fun!!
well - now i get to get everyone bathed/showered and then get EvERYTHING ready for the wedding tomorrow..i need to make a list cuz im getting overwhelmed here!! jon is worried about him being anxious..he's going to come off the methadone and see if he's not so agitated about everything..i sure hope its the methadone- because THIS is NO FUN...its extremely hard on everyone else when he's like this..so pray that its the methadone causing this- and that it subsides..we really need for tomorrow to be a nice day..
well back to work!

back from the doctors...

the nurse came out today to access jons pressure sore..thankfully its only at a stage one..so we'll just keep watching it..he also did his OT and PT today..i ran down to the medical office and handed everything over..they now need our trust information and our business account information and how much we owe on our truck..so back again i'll go!! but glad i got the most of it done before we left!!

i then raced home in time to turn around and get jon into the car off for his 3pm appt..we met with the doc, we did an xray on his ankle..not broken..maybe sprained a little..but nothing major, we did another urine sample..it didnt show up as a UTI but the urologist from a couple weeks ago who took the test said the UTI was so bad that the oral antibotics would work! HELLO! so that means he'll have to have a "flush" and no you dont want to know what that is!! so we'll hopefully get an appt next week and get that done..we also had xray's of his shoulder and we have a orthopedic appt like in august! so she said to call back and try to get an earlier appt..so we will! jons right shoulder feels weaker then the left and isnt sure if there is injury to his rotater cuff..its been a problem since the day of hte accident..but nobody took xrays of it..

we just finished dinner..and the nurse told jon to get out of his wheelchair every 2 hours! like he has time for that he said!! so he's now on the couch taking a break from his chair...his brother scott is still working hard with him on the business..

we are still waiting to see how jon is doing regarding the cruise..he may just end up here at home with kim and make the rest of us go...so we'll see how that goes..

tomorrow i have SO MUCH to do before this wedding for our family..i may have to run down to OC tonite and run back after everyone is in bed to pick up some wedding stuff and some medical supplies that are at the hales home..i will have to wait till everyone is in bed and taken care of before i go..which will be 8 or 9pm...tomorrow i have someone helping me with the girls so i can get out and get it all taken care of..im so grateful to this person! thank you!!!!!!!

temp drops...

well last nite jons temp dropped..so that is good..i got up and made his appt with the doctor for his UTI and to check on his ankle - so scratch that off my forever to do list!! his appt is at 3pm..scott should be here so he can help and watch the girls while we go and get back real quick...
i think while he is doing his PT and OT which are back to back today...i will run down to the medical place and hand in everything - there ms. campbell who is helping me at the office there will go thru it all to make sure its good..then i can scratch that off my list too..only to add 50 other things! Y:IKES!!
i got a call from social security disability stating that they contacted loma linda and they said loma linda said that they have no record of jon...LOVELY! anyway - so i had to give this person a bunch of information..loma linda will just have to look a little harder i guess - so classic!!
this morning was crazy..the girl was here to pick up my younger 2 girls, i thought anna was dressed, but she wasnt...so i was hurrying to get her dressed, then of course could only find one she of THREE different pairs of sandles!?!?! so she got to wear mismatching shoes - oh well - pick your battles- thats the theme of my life right now!! then sarah was BAWLING because she couldnt go with them, then the phone starting ringing for they day (social security), added with jon asking where his breakfast was, the nurse upstairs still asleep even though its 9am, and me just wanting to hurry and take a shower...AHHHHHH...i had to remind everyone that im only one person with two hands taking care of 5 people..one of them counting as 3!!!
anyway - so crazy morning already - and its only 10am..i got everyone finished up and hurried for my 2 minutes shower- more like a hose down off-but atleast im not dirty i guess...
i taught the older 2 girls how to do the laundry - i think they may have it figured out..i bought them gratitude journals per advice from my good friend amie alvey- thanks amie!! my girls all have "chores" they have to finish before they get a marble for the day..which include, make bed, pick up room, brush teeth, prayer, piano, read for 30 minutes and gratitude journal...then on wednesdays are our cleaning days where they will help me clean the house, and then saturdays are their laundry days where they have to do their own laundry..anyway - we'll see how it works out but im trying SO VERY hard to get us to be a normal family without stressing me out..
thanks for the prayers on behalf of jon-- he's doing much better today! i picked up the rest of his meds today so he's stocked back up again..were right in the middle of his bowel program then we'll get him up for the day to start his therapies..

quiet nite..

well tonite its a quiet nite..jon got a lot done and rested in his bed..the nurse gave him a bed bath which was REALLY needed- we hope to get him upstairs with help from jake thompson and peter esquivel tomorrow nite for a shower..that will make him feel SO GREAT!!!
right now were watching him closely..we seem to think he has a UTI, he has a fever of 101.0...so were going to call the doctor tomorrow morning after i cath him at 8am to get him in for the UTI and get a prescription for antibiotics...we may not even need to go in for that..but ill call..and then jon's still worried about his ankle..so we may end up going in to have him look at it anyway..which will maybe lead to an xray on it...

i wanted to add that there are some concerns that people are worried or nervous or concerned about jon going on the cruise..please know that we are not choosing the cruise over jons health, please know that his health comes first, please know that if the nite before we leave and he's just not comfortable about going..it wont happen..but for now..were focusing on him being able to go...please try not to add to the stress and ask him "are you nervous about going!!??!" because yes he is..and he will tell you he is...who wouldnt be..but his desire is to go..and he's told me that if he's not capable..then he's just not going...i just felt like this needed to be addressed..i didnt want things whirling around the nation about this and not knowing the whole situation or how we really felt about the whole thing...
i also dont want people to think we have tons of money or are using any fund money and are out cruising and taking vacations...this money was saved up and already spent way before jons accident..there is also no refund to get any of it back...this is something the whole family has planned for - for about 3 years now..again - i just didnt want to give the wrong impression to everyone out there..
i dont want people to think im trying to defend myself..but sometimes people make judgements before they know the whole situation..that is SUCH a huge lesson i have learned from this trial and just wanted to take a moment and share this before judgements were passed our way..i hope this all made sense and that you understand what i was trying to say..

my pantry..

here my panty sits- amazing all that stuff actually fits in there!

you feel my pain!!

Well the ant guy came...the family from my ward moved ALL my pantry out and here it now sit and will so for the next 7-10 days...because the ants will come back AGAIN and then they will die...so i figured why put everything back just to pull it out again..oh well..such is life!!!
jons doing well...he is up in his electric chair working like CRAZY with his dad trying to finish up this magazine..Todd- need that flow sheet if you have it..
kristi stopped by on her way down from utah - she was amazed at his progress!!! its like a newborn and every couple months you see it- its TOTALLY changed- jons the same way...
the tile in the upstairs bathroom is NOW DONE!! YA!!!!

some of you are asking how on earth we plan to get jon on a cruise..we'll were just gonna do it- no need to sit at home and think about all this---thats why we've been working so hard on finding the right medications for him...were SUPER close now..so we feel he'll be okay..we have a RN coming with us- there will be doctor on board..so were not too nervous...the trip was planned and paid for before he got hurt..so were just gonna go for it..he may just end up in his cabin most of the time..but thats okay..it will be good for him to be with his family..that may surprise some of you-- but pray it works out...yes he requires full time care, but we have a full time nurse coming and 31 family members- i think he'll be okay...his pain levels have been at a constant 5 or 6...so we'll just work with what we have..its not a 0 but its WAY better then a 9 or 10 at this point..and nope- no cruise restrictions, weve been in contact with them, we already switched our cabin to a wheelchair cabin with the nurse in the very next room, you dont need a doctor's clearance to go on a cruise- its up to the patient- if he's up for it- go for it- which is what the doctor told us- it would be good for jons mentalness for him to realize life goes on and he's not stuck at home while everyone else is having fun and going on with life -

well becca got woken up from her nap today- and anna went to bed late due to rachel and got up early due to rachel - so we just finished dinner and now im going to go try to put them in the tub and into bed for the nite..then i'll work on the older two girls..then i have to go to walgreens AGAIN for more medication drop offs and pick ups...i feel like walgreens is my second home!

thank you to those that bring dinner!!! Whitney - thanks!! im sorry that im never able to really thank those that come bring us food each nite..its SUCH a crazy time right then - kids in and out of the house- jon needing to be cath'd- trying to set the table..anyway -im sorry if i cant say thank you enough - but were SOOOO very grateful!!! i promise to make it up to you- everyone that has helped!!!!

working hard...

this am i got up and picked up the house before the r/s sisters came to clean it..we all worked SO HARD!! im SOOOOO grateful for them to help me at this time! its so hard because i had SUCH a good system set up! i would clean the entire upstairs on tuesdays and the entire downstairs on thursdays...this summer i was excited to start getting my 2 older girls involved..anyway- everything's totally changed and not "what i had planned"...anyway - so im just SOOO thankful that they come help me clean - they are suppose to come every wed..but im having them only come every other wed so that i can start doing it the other wed's they arent here...
jons having some pain this am...he's telling me he doesnt think he'll get into his chair today- MAN! i need to look at his pressure sores and see if they are causing the issue or what...we did 1/2 methadone and then the dilaudid down to every 6 hours..so im not sure if its the med's being timed differently or his pressure sores causing problems...so frustrating! we were doing SOO WELL!!
well jons dad should be here shortly - with our usual carls' jr lunch..looking forward for that! i forgot to eat breakfast AGAIN - gotta love western bacon burgers YUM!!
i need to get my girls over to lisa's to try on the dresses she made- SORRY LISA about yesterday - i'll call you and come today!!!!!

i tried to get the passports out of my safe..only to get the batteries in..the code works and now the key wont turn - MAN! whats my deal!! so i'll have to ask jon if we can bust it open or im missing a step or something!??!?!

well back to work - washing bedding, doing projects around the house - the family is here cleaning out my pantry so the ants can get sprayed- they are now in our bathroom vanity areas-- hopefully we can just get rid of them!!

thank you for your prayers and thank you SO much for your service you render to our family!!! im so thankful that people are here willing to work and help me get back to life again !!! i want to SOOO bad not have any help - and do it all on my own..but in the same breath i know that i could go crazy and end way worse then i am already --i need to be here for my family and for that im SOOO grateful people recognize my need for help and for helping me work my way back to our normal life..we'll maybe not normal - a new normal though!! thank you thank you thank you!!

the day has come to an end...

well our day has finally come to an end...its 845pm now...i got jon to his doctors appt...we were about 30 minutes late due to traffic..but i called and told them were STILL coming - please dont charge us a no show fee!! YIKES!! we decided that jon was doing great with just ONE methadone a day vs going up to 2 methadones...so thats our plan..he will take a 1/2 pill in the morning and a 1/2 pill at nite...we will also be doing his dilaudid every 6 hrs instead of every 4 hours to see if we can get him completely off dilaudid- this makes us VERY happy...although we just traded one heavy addictive narcotic for another...hmmm..well anyway - its a few less pills a day i guess!!!
we came home and ate our dinner..the caretaker had left at 4pm and the other one didnt arrive till 8pm..so i fed jon and then got him into his bed with my dad's help..my dad put our shower and toilet back in!! YA!!!! my bathroom again!!! the tile still needs to be grouted on the flooring - but hey were close now!! i believe marc pendleton is going to head up getting the rest of the house put back together, gettting the carpet layed, getting the wood flooring into the kitchen, staining the french doors, putting up the baseboards and 3/4 rounds, and painting the walls back to their color...we'll be gone for 9 days on june 24th till july 2nd..so he's hopefull all that work will get done that week while were gone anyway..
at 8pm after i got jon into bed i went up and bathed/showered the 4 girls..then we had family prayer, and then they did their 30 minutes of reading time before bed..

well i feel like i got a lot done today! i ordered lavender ties for all the guys for mark/jennifers wedding - sandra they should get to your house by friday! i called medical and they DIDNT need my social security cards, they have proof already that they are legite, im getting a copy of our life insurance info tomorrow in the mail so on thursday i can go into medical and hand in all the paperwork they needed to get that started..WHEW, i contacted the wheelchair company-but just an answering machine, i contacted a few things about some medical bills and got that ironed out, i got a few more paperwork things done dealing with jons care, so all in all..a successful day..

time to go make sure girls are in bed for the nite-- thanks so much for everyones prayers!! please continue to pray for more movement for jon, pray that this new concoction of meds will work for him so he can function, pray that this acidophilos will work for jons bowels and they will function properly, pray that we all get enough rest to function thru the busy day, pray that we find a routine so that i can be back with the family more and we function like we use to, oh and dont forget about the ants! pray they go away!!!

change of plans...

well i called the ant place...and he was double booked so now i dont have to worry about that till tomorrow - YA! i had one family show up to clean my pantry for me!!! HOW NICE IS THAT!!! so they'll come back tomorrow...THANKS GUYS!!! i vaccummed the ants out of pantry only for my vaccumm to start burning and blowing out black smoke! i swear - my day is so lame!!! i said i think im just going to go back to bed and start over!!!!

my parents called and they are on their way up - YA!!

we've FINALLY got jon up in his chair..it took till 1pm to do so...he didnt want to go in the electric one because he wants to "work" and not get lazy in the power chair..which really means more work for me again...we need to work out a balance here...
i need to call on HIS own wheelchair to see what the deal is? where is it? did they finish it? did they even start on it??

i called the nurse..but as usual she's not there and "they'd call her" so that means 'call us back to make sure we did that!"..i tell ya im learning!!!

i still need to go grab some batteries over at walgreens real quick..

its now already 130pm and we still need to eat lunch!! good thing there's left overs from last nite- ill warm that up..

i tried calling medical--but of course only answering machine..i called on a few of jons bills..we got charged 3 bills from 3 DIFFERENT doctors for jon at loma linda..i noticed the dates and they are for 3/17-3/19 HELLO! thats when jon was over at riverside regional!! he wasnt even AT loma linda then!!??? wierd! not to mention he didnt get hurt TILL the 17th??? so i called them -but got a machine "they're out to lunch"..

SO i think ive scratched 2 things off my list and added 15 more..such is life!! now where is that chocolate i had stashed around here?!?!?

overwhelmed and really tired..

well for some reason im REALLY tired already and overwhelmed...to start im working on finding someone that can come help me for the day..katie has a sore throat and were too nervous about getting jon sick..im working on maybe trying to find a sitter for the girls because we have a doctors appt at 430pm..i need to cancel my 2pm appt with the lds social service because we now have this 430pm appt..
im trying to work on medical application, but noticed i dont have a social security card for jon or rachel or myself, so i need to find out it IF they REALLY need it or what..then if they do i'll have to call somewhere else and get some sent to me..
i have ants EVERYWHERE in my house and its driving me crazy, so i have someone coming to spray for them, which means i have to clean out my entire pantry which is the size of a good walk in closet sometime today before 430pm..
jons on his methadone the 2 a day program now -so he's body is REALLY relaxed and hes REALLY anxious about that..so that just add's to my stress level as is..
im trying to register for this cruise were going on (jons family had arranged for all 31 of us to go on this cruise before jons accident -it was all planned and paid for then 4 weeks later jon had his accident)..but im HOPING my passports are in our safe which NOW the batteries dont work so now i cant even open it!! RHGHHGH so i now i have to go buy some batteries..
i have to call the doctors to figure out if they've called the insurance to pay for this one medication we're waiting on..
jons got 2 pressure sores possibly that im keeping my eye on..so now i have to call the nurse to get her over here to check it out..
jons still worried about his ankle, so now he wants me to call a doctor to have it looked at..because he thinks he's feeling some pain around his ankle..

anyway i feel like today im trying to get so much done but im 3 steps backwards on everything!!! i went to get my purse only to find a snickers bar wrapper in it and its PLUM full of ants as well...

so lots of complaining from me today--sorry about all this!!! its all small stuff-but there's SO much of it i think!! plus for some reason im just so tired..i dont know if its because i ran 2 miles on friday and 2 miles last nite or what..im fearful of how the rest of the day is going to turn out..hopefully better! if im cranky with anyone - you'll now know why...

oops...

well jon thinks he messed up his ankle...he tried to turn in his chair and his foot MOVED the BIG couch- OUCH!!! we've had ice on it..we think its swollen a little.. he thinks its totally broken..so far no bruising..so we'll see what happens thru the nite...
all in all it was a good day --marc was here with jon helping him with computer intefacing equipment from about 1-430pm..then we had dinner and fhe..it got pretty crazy here- i had to keep my cool and make the 3 older girls go upstairs for 5 minutes or i was going to lose it with everyone!!! but we regrouped and it turned out fine..i know heavenly father is helping!!!
tomorrow we have no appt's other then a doctor's appt at 430pm..the pain guy..to see how this methadone is working..
i talked to the rushtons and she told me her schedule- WAYYYYY easier then mine!!! she does everything..but after talking i realized she does a couple things in the morning and then a couple things at nite..and then she's done..he uses a condom cath so she never has to get up in the middle of the nite- imagine that!!! jon cant use a condom cath because his bladder doesnt empty all the way..a condom cath is used for people who's bladder responds by a reflex..since jons is half working half not(meaning it doesnt empty out completley UNLESS he's cath'd - if he's not completely empty he'll have the autonomic dysreflexia issue)..we have to do it how we've been doing it - DARN!!! then she said she does the bowel program every other nite..not daily like we do...i dont know if jons comfortable with allowing that to happen since his bowels are his BIGGEST pain issue sometimes..she only has to do one transfer from the bed to the chair..and she's able to use a hoyer lift..then she transfers him again from the chair back to bed..he sleeps on his side the entire nite and never rotates...jon rotates every 4 hours thru the nite along with getting cath'd and along with taking meds..rushton doesnt have as many meds because he has no pain..jons on 4 different meds JUST for pain and 4 different meds JUST for his bowels..
so sadly i was excited..then once i heard how different our injuries are and what were dealing with..i got so bummed out...so back to the drawing board to figure out what will work for our family...

well i cant believe its ONLY 9pm..feels like midnite to me!

check out jons new ride!

hey check this out- so far so good!!

jons doing good..

jon is dressed in his kkakis and a button up shirt- looks like the old jon again! he's doing well..he's really tolerating the methadone well now..they only start him on the SMALLEST amount then we work our way up..he's only had one pill eachday-then today we'll bump him up to 2 pills..we go to pain management tomorrow..then we'll do 2 pills for 3 days then 3 pills for 3 days and see if the methadone helps him..it just takes some time to adjust to any new medication...we did the same thing with the effexor we took the smallest amount and then we noticed it was causing problems so we stopped it..
YA the equipment JUST got here!! im excited to see what it all is and if it will work for jon!!!!

autonomic dysreflexia...

today jon woke up in a good amount of pain...i cath'd him at 8am and got 300cc..then he "worked out" he showed me his legs..we THINK he may be moving his knees!!! we're keeping a VERY close eye on it- were not sure if its his hips moving or his upper body or what BUT there IS slight movement!!!

around 10am he was having signs of autonomic dysreflexia again --i thought OH NO not again!??!! his pressure was 147/100..his typical is 91/58...so i immediatley cath'd him gain and got another 300 out..then i checked his bowels..i worked with him and in tandem he did SOOO GOOD!! we got a good amount and the blood pressure dropped..im SOOO grateful that i am able to relieve that kind of pain and bring his blood pressure down..there is something so totally wonderful about doing these things for him...the other caregivers dont really work with jon the way i can and he's SOOO grateful when im there to really work with him!!!

he's now getting dressed for the day and will begin his VERY busy day today..he has a meeting at 12noon, then a friend is stopping by, then his PT and OT today..i have a company -THANKS RYAN MCCOOK -who is going to help spray for ants-- my pantry is a nitemare..i've got a big project to get that all cleared out..its out of control...like i REALLY needed ants on top of all this!! rhghghh

the equipment is coming this afternoon for jon to try out - it includes a commode chair, a hoyer lift, a trailer lift, a titaniam wheelchair, an electric wheelchair (that weighs 330lbs!) and some supplies!! its from a family in eagle mountain utah..were so grateful! wer'e going to test it all out and work out something with her to purchase it all..

i just wanted to take time to REALLY thank those that are helping - im sooooo grateful...i want SOOOO bad to have my family back and to do it all...but i know that it would ruin me to take this all on my own..and im so excited to take these baby steps to get my family functioning again and start living our lives as normal people again...im SOOOOO grateful people are understanding of our needs, and understanding of our time line..and willing to do what it takes and be here for the long haul..were so blessed!! this truly is SOOO hard

i hope dede doesnt mind that i stole her comments from her blog and posted them here..
"I know everyone reads christina's blog... and i thought i understood a little bit of what was going on for her.. not really understood.. but pictured it i guess.... I WAS SO WRONG.. wow... the hales family is amazing.... that is all i could say.. i was speechless.. i don't even know them that well (although i feel i do...cuz of amie and from knowing all jon's brothers)... I can't believe the trial that they are facing.. and and i was amazed by their strength and their faith... christina just is organized, patient, solid, happy, calm, loving, and so so STRONG.. and jon is so faithful, sweet, caring, patient, strong, and determined... i was literally blown away.. i held the tears in until i got in the car.. i drove home in silence.. no music, no phone, and just thought and prayed... WOW... is all i can say.... they are truly an amazing family.. i really don't know what to say about it all ... all i can say is.. i know Heavenly Father loves them.. and I know is watching over them, i know he will bless them beyond believe.. and he will carry them through this... i know that they are very special, and that he will only give us what we can handle... it reminds me of that question.. that EVERY person i met on my mission asked me......WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE????? it was one of those questions that was so hard for me to answer.. cuz as they would ask.. i would see so many people suffering... and it is just a hard one for me to answer.. but all i can say is .. we are his children and he loves us... and HE knows best.....I thank the Hales for their strength and examples... and ask everyone to keep praying for them....."

please--keep praying!

jons emotional..

tonite jon was extremely emotional...he cried a lot..he's sad because he cant sing..he noticed it in sacrament meeting, again when singing with anna this afternoon, and then again trying to sing her happy birthday with the family...his comments were "i felt like singing was one of the talents i was given..and be it i wasnt great at it - i thought i was atleast really good at it"..then he just started crying..he said "i cant even sing happy birthday to my kids"..
he's also very worried about his business, our house, finances, all the things men worry about daily..only now its 10 times fold for him...he cried more..
its times like these that im not quite sure what to say other then just hold his hand and let him cry...because people dont want to be told "well it could be so much worse" or "one day at a time" or "we'll get thru this"..sometimes people just want to simply cry! so i let him...
its times like these i think ..man it would be so much easier if it was me instead of him...but thats not the way it was meant to be.."lean not to thy own understanding" means so much more to us now...
i look at my kids before i go to sleep and think..these poor children..who in a sense have lost both parents...and i dont know whats worse..losing them physically or losing them like they've lost us..we're here..but we're not here..if that makes sense...maybe just to me it makes sense...i keep trying to make the next day better then the previous day..
jon and i ended our nite with companion prayer..he cried some more and then said.."okay thats out of my system so we can both sleep now!"..sometimes its just good to get it out..im glad he did..

jon awakes!

jon finally awoke after a long nap..this methadone makes everything relaxed adn sometimes his breathing so i have to constantly watch him...
the older 2 girls headed off with the thompsons to go to gavlin hills..they'll have fun looking for lizards and eating dinner with the thompson clan...
i found a couple frozen pizza's in the freezer so we ate that with some salad i found in the fridge too - gotta love the all in one bag salads!! yum!!
its almost 7 now..pizza's should be done soon..then the older 2 girls will be here and we'll start anna's bday..

Sunday Afternoon...

Well its Sunday afternoon-- love those times..its typically quiet and calm..yesterday we made it to the recital and stayed the whole time..then we stayed till the ward bbq which was nice to be around such awesome ward members...then we got home and i got everyone bathed and ready for bed..the santos' came over and we played a good game of pollyanna- which i won! WHOO HOO!! jon was SO wiped out..he was ready for bed..he quickly fell asleep..
this am i got up and the nurse helped to get jon ready and sis. kennedy helped to get the girls ready..we all really worked hard as a team to get us there..the nurse then went to sleep until we got home..
jon is just SO tired right now..he's crashed out in his chair in the "pressure release" position..im going around the house picking it up after a crazy weekend..i feel like i just want to sleep for 3 days now!!
its anna's 4th bday - so were going to do a little family celebration..im hoping i have a cake mix and frosting in my pantry somewhere! which seems to be having issues with ants right now - SO BUGGED!!!

i think today were a little overwhelmed with things..we're just trying to figure out how we're going to make our business work and succeed. Jon literally did everything for it...and trying to tweak it - its a HUGE challenge..were so grateful to his family that are here helping us with that..but still..its something that's constantly on our mind and continues to make us nervous..

Mark gets married next saturday - this whole time we thought it was friday! so its now saturday at 1pm...it was originally at 10am..were SO thankful it got moved to 1pm! makes a HUGE difference for our family!! jon forgets that its not just a 5 minute thing to get him into the car- its tyically more like 15-20!!

its interesting for me to think...i feel like im just drowning in whats goin on in my life that i cant even IMAGINE what it would have been like if jon wasnt in his current condition..i alwasy ponder..where would we be? how would the business be doing? where would we be with that? what kinds of things would i be doing with the kids? would we have gone anywhere with them being out of school? how many OC visits would we have made these past 3 months? sometimes i think about the things jon "would have" been doing and it makes me terribly sad...now...its like living with someone 3 times my age..its just not the same...its a fine line i walk..to have to stay careful not to let Satan destroy what happiness i have left in our family..i will find myself staring at this OUTRAGEOUSLY HUGE balloon our friends the dobberts gave us the day of jons accident...would you believe its still FLOATING!?!??! it is!!! i look at it and i think thats kind of like our family..first off were HUGE..its got TONS of smiley faces on it..and yet its pretty rathered looking, you can physically see some of the airs come out of it..its starting to wrinkle....and YET its STILL FLOATING!! were still trying to hang in there or hang "up" there..even though our life is pretty rathered right now..were still trying to stay afloat!! the balloon says "get well soon" and it helps to remind me..that yes in fact soon, he WILL be well...

well enough rambling from me!! we want to express my sincere thanks to those that have helped our family these past 3 months...this has been quite the trial and challenge for EVERYONE to try to figure out how to best help our family..im thankful for those that email, send cards, pray, fast, call me before they stop off at the store, show up at my house and manage to quietly clean it, or play with the kids, or visit with jon, or watch me cry, hold my hand, make us laugh, those that show a sincere interest in helping us, those that bring jon a green burrito, there are so many things!! were thankful for the families that pray together for our behalf...that is a wonderful thing..and to see jons movements..he can now move his big right toe, his right index finger AND NOW all of his toes on his right foot!! PLEASE PLEASE PLEASE we continue to ask you to pray for more movement...im not sure i've shared this but when jon first felt pressure..it was in his big right toe..and that was the first movement he had- we have to keep going from here!!! i know we can!! PLEASE also pray that we find a more natural solution to his bowel situation..he actually had movement WITHOUT having to take the ducolax..help us to find something that works well with his body...PLEASE pray that all this pain is for a purpose..and that his brain will communicate with the rest of his body..that it will make a connection..we were originally told that he would be paralyzed for life from the neck down, he'd have NO movement, he'd be on a respirator...look how far we've come - truly a miracle and the power of the priesthood, prayer, faith and fasting of others...how incredibly thankful we are..truly we thank you..