what a day!

well to start off-- jons pain was about a 6 all day..so thats GOOD! right now at 830 its heading towards and 8..we're getting late getting dinner fed to him and stuff..he's anxious to get back in bed and go to sleep for the nite..
he stayed in his chair all day since 1230pm..so again thats GREAT!!!
we headed to the appt..THOROUGHLY frustrated with the doctor who had THEE BIGGEST EGO EVER!!! so frustrating...anyway - jons blood pressure from the nurse was 90/60 then about 30 minutes later the doctor took it and it was down to 78/58 - WEIRD! its never been THAT low..anyway - he said we needed some sort of blood pressure med to keep this pressure stable..we KEPT SAYING its ALWAYS 97 over something it STARTED jumping up because he's gettin SIGNS of dysreflexia!!! he kept saying well he shouldnt have a pressure so low as 78..anyway -i wanted to just tell him TAKE IT AGAIN already!! anyway - frustrating..
the other thing is he basically told us he's been having dysreflexia this WHOLE time but its just now more prominate..he explained the headaches away with something else..anyway blah blah blah mixed in with ego ego ego..get my frustration!!?!??!
WHAT a waste of 2 hours we felt..i was SOOO mad..i told jon when the doc left real quick that he wasn't addressing our concerns and im going to start up..he said go for it..so when i did..he just kept repeating the same thing..and i felt like jon was just done with the doctor all together so i just gave up talking as well and at that point just wanted to get out..we then went over to the lab so they could take a culture of jons urine..
while cathing him in the bathroom..we were BOTH TOTALLY frustrated with the doctor and eachother..we both broke down..were in the middle of this bathroom of this clinic just frustrated with everything..anyway - it wasnt pretty...
we came home and had some dinner..at which point jon asked the nurse for him to have a few minutes with me..so she went upstairs..jon then apologized for his behavior in the bathroom and for taking his frustration out on me..he said "how can the angels administer to me when i have a spirit such as that"..anyway - it was touching..and he apologized and asked me to have him take a deep big breath should something like that happen again..so then we wiped our faces off because we had done so much crying by that point!!
he's now getting settled for the nite..and im feeling HORRIBLE because rachel's been wanting to spend time with me since the other girls havent been home and ive been rushing here and rushign there and "trying to help daddy" i feel SOOO BAD it just makes me cry, cry , cry...im mad because she wants me to go in the spa with her and "talk" but i cant because im stuck helping jon transfering doing the bowel program..anyway - now im just rambling on and on...

for the most part jon is doing good..he's improving..the doctor talked to use about getting a morphine pump..which we have thought about..were still trying to figure out meds..jons a little hesitant about the pump till the drugs have been figured out first to see if they'll work..so we'll see what we decide at the pain management appt which is next week..he also said that jon was a C5 injury..but you can either have issues below the injury or above..obviously jon is below..he's really more of a c6, c7 injury..were SOOOOOOO THANKFUL AND WHAT A MIRACLE that its c6 and c7 vs c4...if it was c4..he would for sure have been like christopher reeves..WHAT a blessing RIGHT THERE!!!

i want to thank ALLLLL the sweet little primary kids that pray for jon and especially for the ones that fast!!! SOOOO WONDERFUL!!! your faith is so beautiful!!! thank you thank you thank you!!!!! we want you to each know that its WORKING and were SOOOOOO grateful!!! im so thankful that your helping me to help jon not have pain!!! THANK YOU!!! although today was a rough one emotionally and all that happened..were trying our best to keep an eternal perspective..

wednesday morning..

well jon did good last nite..he said he's back to not waking up when he gets cath'd or when he rotates thru the nite so that is good!! his headache's have been subsiding as well..
he is in a little bit of pain today..but just trying hard to work thru it..he got up in his chair and didnt pass out..he got in at about 1230pm today...his dad is here - he's HOPING he can finish up his article today and then finish up the magazine tomorrow with scott to get that out and published..even though its a month late-but oh well..were trying our best..
right now the OT is here..she's doing a lot of things with him..she's impressed with what she see's so far though...so thats good news!

today we DONT have a urologist appt its a NUEROlogist appt..which is even better! he's going to know MUCH more about autonomic dysreflexia and will be able to get some more answers..do that will be good..jons dad REALLY wants to come with us..so i had to call my childcare contact person to see if we could scramble to find a sitter for becca and rachel while we go..hopefully we get someone! well she just called back and were good to go so thats great!!

well so far he's doing good..MUCH better then last week!

tuesday evening..

well today was kind of a bust!! i headed out this am for my LDS social service appt..only to be met with some HORRIFIC traffic!!! i guess by now you've all heard how the 91 or the 215 all lanes were shut down ALL DAY!! so i ended up calling in and they said the social service person was stuck in the traffic..so no need for me to sit in it too..
i met back here with the bishop and r/s pres to get a few more things figured out..
then i headed down to try to find 4 white dresses for my girls for the 2 weddings coming up..and one black dress for me..i ended up only finding the one black dress which i think i'll be taking back tomorrow..funny how things aren't as cute when you try them on in your own home!
Kellie was here to help for the day..for the most part it was a quiet day..jon ended up just staying in bed...he'll try again tomorrow..he did however make it in the commode chair tonite! so thats good!!
were finishing up with him to get him settle down for the nite, then i will have to rework his schedule..it keeps changing due to things that are happening with him..
because of the traffic neither of his PT or OT showed up today..

tomorrow will be another long big day again, jon will have his PT and OT tomorrow as well as needing to get in and out of the truck for his urologist scan/appt tomorrow..i will also put a call into the doctor to see if we can have some sort of scan for his one artery that he's concerned about. It was severed, not completly though during the accident..we were told it would heal on its own...and that because his other artery was SO strong, it was doing all the work and he'd be fine..it would heal and work together again..he's had 3 scans already and nobody has said anything about them..so i think we'll do another one and MAKE sure nothings wrong with it or they havent missed anything...

i will also call his pain doctor and ask him what else we can do about this pain his still constantly in...we've already raised the nuerontin..so we need to figure out something else to do as well..

well - thank you to everyone who had fasted with us this past sunday - we can SURE see the blessings because of faithful people around the nation!! im so grateful! im soooo lucky to have people that dont even know us- pray for us, think of us, fast for us- its one of those things that i sit and think about all the time..thank you.

as i was walking thru the mall (in 10 weeks kind of my "first outing") i realized there is SOOOO MUCH STUFF!!! i thought about how i would usually go in this store for cute shoes, or this store for a cute dress, or this store for something for the house...SO NOT NEEDED i realized!!! i really thought about how little we really need to be happy...i guess maybe for me...while i have a husband who is just laying in bed day after day in pain..i realize there's too much "stuff" in the world and not enough time spent on important things that really matter...maybe thats one of the many many lessons im to learn..

Update

Jon had a good night. He woke up with a headache which seems to be more in the center of is head now. Jon has concerns about an artery on the left side of his head. His artery was cut and coagulated from the accident and it's supposed to heal on it's own.
Jon went into his wheelchair at 12:45 and passed out. After he came to he was still really pale, the color never came back to his face. He is in a lot of pain right now so we put him back in bed. We will try to put him in the wheelchair again in a couple of hours.

ready for bed...

Well its now 10pm..jons getting finished up getting ready for bed..the girls got home about 730pm and then the child care r/s sister came and got my girls bathed for the nite, while they did that i was able to cath jon and do his bowel program for him, which again was a good success!!
Then we were all ready to watch a movie together, it was hoodwinks, we started it at 9pm and watched it as a family...i wheeled jons bed into the frontroom to watch with us..it was great..although i had the other 3 girls crawling all over moms lap fighting to sit with me, but we managed to get thru it..
Now everyone is resting in bed, jons finishing up then he'll be ready, as will i..

Tomorrow will be a busy day again, i have an LDS social service appt at 9am, then followed by a meeting with the r/s pres and the bishop at 11am, followed by hopefully PT and possibly OT for jon..i will probably have to call AGAIN and get on someone's case!!! Then rachel has piano at 4pm..so BUSY BUSY day!! I hope jon keeps on improving!!

Resting..

Well jon stayed in his wheelchair from about 130pm-430pm..pretty good! like last time he started getting more pain the longer he stayed in his wheelchair. It was getting pretty bad at the end, so he asked me to put him back in bed.
We had a good bbq with the McGee's. They made bbq chicken and salmon, corn on the cob and bbq beans, and yummy cookies!! GRUB!

The Pendletons came over and took the 3 older girls to the school grounds to play handball- my girls are pretty good champs at that!

It's now 630pm and ive just put becca down for the nite, since the girls woke her up..jon and i are going to start a movie and hang out together..its SO nice that i can wheel him into the front room to watch a movie and hang out!

The nurse will get here about 8pm, which again means i will be doing the bowel program. It will be nice to have someone here living with us full time that can help me more with these kinds of things. Please keep your ears and eyes open for possibilities!!

So far so good..

jon did well thru the nite..we had to cath him every 3 hours and 15 minutes..right now its almost noon and he says his pain level is at a 5..he feels like it will get worse as the day goes on but right now he's pretty comfortable in bed... he does plan on getting into his wheelchair..so that will be good!
The McGee's will be over in about an hour to bbq and we'll let the girls swim.. so it should be relaxing..

Ill keep everyone posted as that day goes on..thank you SOOO much for all of your prayers..they really are working! what a testimony!!!

I really do pray that he gets better and we can start moving forward, forward with the rest of our lives..i feel like our lives have been "on hold" for 10 weeks!! im just anxious to start moving forward now..i cant believe mark gets married in about 3 weeks..i PRAY that jon is ready for that- that will be SUCH a big day..i pray that he is able to sustain himself thru that!!! Im a little worried because we'll need to be at the newport beach temple early..mark's sealing is at 10am..hopefully it just works out..but it does make me SUPER nervous!!

well hope you enjoy your day!!

pretty good day..

Jon lasted about 2 hours in the wheelchair which was great! His pain level started to get back up to an 8 though..but we got him back in bed and comfortable..we checked his blood pressure and it seemed good..so that was a relief..dinner was brought over so we all ate that together..then he was ready to start his bowel program which went really well also..
now he is resting in his bed getting prepared for the nite..i pray that he sleeps well..last nite he just kept waking up so much..so hopefully tonite he'll sleep longer and get the REM sleep his body needs...
I will also call the pain doctor or page him and ask what we can do about his pain since he's now off the effexor..we dont really want to WAIT till his june 7th doctor's appt!

After we had put him back into his bed, jon father and brother (Todd) gave him a priesthood blessing. Then Robert gave him a Fathers Blessing. We feel so blessed to have worthy men, fathers, brothers and friends that hold the priesthood. The priesthood is the authority to act in God’s name. The same priesthood authority that existed in the original Church established by Jesus Christ exists in The Church of Jesus Christ of Latter-day Saints today. The Church is directed and led through this authority. All male members of the Church who are prepared receive the priesthood in order to help lead the Church and serve Heavenly Father’s children. One of those ways is by blessing those that are sick. Im forever grateful for these men that are asked to give priesthood blessings..that they continue to keep their lives in order so that they are worthy to hold the priesthood. Im so grateful that they take this seriously.

It seems like the past 10 weeks have gone by slowly and so fast at the same time. Now that i think about it, it seems like when he was in the hospital it went by slow and now that he's home its FLYING by!! by the end of each nite im so very tired..i still feel like ive been to disneyland every nite when i go to bed..my feet are SO tired!! Today the girls ALL of them were just all over me for a long while..i heard jon make the comment to his mom..see thats what happens..they're always wanting to sit right on top of mom like that..sometimes i just need a breather!!

well AGAIN THANK you to ALLLL of those that prayed, prayed of different faiths, because yes in the end, we are all brothers and sisters of a loving Heavenly Father. How grateful we are to be going thru this trial to learn how to become more Christ like and more worthy to be called His Child. How blessed we are to learn of opposition in all things and then to learn to appreciate them. How blessed we are to see family members come to our aide and share their love with us. How blessed we are to have such wonderful friends that come to lighten our load. Its because of all of you that we are able to go thru this trial and we all look forward together to the promises that were made as Jon received his first priesthood blessing before his surgery. He will be healed and made whole. Before jon was given this priesthood blessing he said "i feel i've lived my life worthy to receive this blessing." and he definatly has. We received a phone call from a man in Utah who had read the article in the Church News. He was SO inspired by us he just HAD to call! so he did! He talked to us a bit and said he could feel our spirit as he read thru the article. He then said that "If Heavenly Father could give a miracle to a man so unworthy of it- i cant imagine the kind of miracle he could give to someone so worthy as yourself!" It was very touching.
well anyway- now im just rambling on! its time to check my emails and head to bed with a thankful heart- thank you for providing that for me! im so grateful!!!

he's in the wheelchair!

Well today jon made it in the wheelchair!! Jons mom worked on jons toes - GROSS for me - but fun for her!! We teased him that he was having a "pedicure" he made sure we ALL knew he WASNT having a pedicure just a trim!! we'd for sure say otherwise!! thanks mom - theres just some things i cant do - that would be mens toes!!!

I was able to wash his hair as well..Robert was looking for the cucumbers to place over his eyes and Todd was looking for the avocado mix to put on jons face..so today were obviously having fun with jon.

Jon did make it into his wheelchair about 3pm today..he's trying to just relax and not pass out!! SO far so good..im so grateful!!

I want to thank you all for your prayers and fasting..its REALLY working!!! how wonderful!!! His pain level is also DOWN to a 6!!! this truly is a miracle that he can go from being in tears to a pain level of a 6 now!! THANK YOU!!! you are all the ones that made this possible for us!! THANK YOU THANK YOU THANK YOU!!! i have newly freshed given hope that we can AGAIN look forward to our future and his healing. How wonderful to experience this!!

He's feeling a little better..

This am Jon is feeling a little bit better then yesterday. He said he hardly slept thru the nite because he kept waking up every 1.5 hours thru the nite. The caretaker is pretty tired too since she was up every 2.5 hours cathing him and giving him meds.

He's planning on just laying low today. Todd will be here around 2pm to be with him.

There was a couple here last nite, and they are the type that dont ask "what can we do?" they come in and find things to do - that has to be the MOST helpful thing for us right now! We arent in a position to be able to stop and tell you everything that needs to be done. Im SO grateful to have friends that feel comfortable just walking in and looking inside the home and outside the home and are able to just do what needs to be done- thanks guys! Also this same couple came in to speak with jon, and jon said that even though he hardly knows this couple WHAT an impression the Brother left on him.. Jon said that even more then them showing up to help..but what he said meant the world to him..he said "Jon, we want you to know were in this for the long haul, no matter what, were here for the long haul whatever it takes." This morning jon said that meant SO much to him!! That they would acknowledge to Jon that they were here for however long it took, and that they understood that this infact IS going to be a long haul..and that he wouldnt be abandoned or left behind by this one couple. so again THANKS guys! he really needed to hear those words from someone else other then his family. It helped him to know they were committed to him and our family.

Right now the caretaker is going to be giving him a bed bath to help him to continue to feel good. We'll see if he's able to get in his wheelchair- if he does thats a GREAT sign that things are getting better.

I did remind him that he did take an extra dose of the nuerontin..so hopefully that as well is helping him. I also told him there are still THOUSANDS of people constantly praying on his behalf- i hope Heavenly Father hears our pleas!!

Calling for Special Fast...

Due to Jons condition, im humbly asking for those that are able, to fast for Jon. Im very worried about his situation with Autonomic Dysrefelxia. It is so very serious. We are trying to eliminate the root of the problem. We feel that cathing and taking him off the effexor are steps we can take.
PLEASE if you can fast and pray for him. That we will find the root of the problem causing the dysreflexia. That we will stay awake and alert and be on top of his condition. That jon will MENTALLY and EMOTIONALLY stay strong...he is really suffering now in those two areas.
Thank you so much..im so grateful.

please bring sacrament..

i dont think jon nor i will be going to church tomorrow..jon is just not in a state to be able to do much of anything..let alone go to church at 9am..
SO tracy- hopefully you read this and find out that we wont need you here in the morning..i will get the girls clothes ready this evening..and they are already showered for tomorrow..i will be up to dress them in the morning ready to go..
ive asked a friend to take my truck and bring all the kids to and from church..hopefully that all works out..i'd love to go myself but will need to be here to care for jon as i am the day nurse for him...

since we wont be attending sacrament..please EQ bring the sacrament tomorrow..thanks!

jon is still suffering with a massive headache..we've already cath'd him..so im not sure what else i can do but keep watch over him..this is SUCH a stressful situation right now!! i sure hope tomorrow is better vs being worse..right now his chest is also VERY tight making it hard for him to breathe...his headache is so bad..he's emotional about it..its mainly on the right hand side front to back throbbing..he says basically throbbing to the beat of his heart...he's eating dinner now..then we'll go on with the rest of the stuff tonite..what would i do without all the help im getting on a DAILY basis!!! i would probably just sit and cry...its so awesome to have people here to just step in and do what needs to be done..and for SO MANY OF YOU who arent here in my area..to send prayers, thoughts, emails, posts on my blog, all those things REALLY ENCOURAGE me to keep going - so thank you!!!

when he was paralyzed..or when we found out..i NEVER thought he'd be going thru ANY of this!! its bad enough already that he's paralyzed right now..so to have pain on top of this and headaches and everything..jon doesnt just do things in a small way ..he never has..guess he never will..i cant imagine not being able to feel..but being able to feel! its like he cant feel anything good right now it seems to be only bad things!! but he says ATLEAST i FEEL SOMETHING!!! thats so very true.. we're just going to keep going forward with our eternal perspective..enduring MEANS so much more to us now...

quiet day...

well for the most part..today has been quiet.. i tried to get jon into his chair..but he was just in too much pain he couldnt do it..i had to lay him back down because he was showing signs of passing out..he was thankful..then he just lay there saying the pain was just getting to be too much..he's suffered so long he said..he was crying..MAN that is hard to watch your husband cry!!!!
then he quickly said..okay enough crying from me..ive had my moment for today lets get on with things!!! SO SAD!!
as i was helping jon with stuff..sarah made the comment "i wish we could have our old dad back the way he use to be"..again SO HARD!!!!!!! jon told her..im getting better its just going to take a long time..
anyway- a little sad moments here and there..but were working thru them..
time to go watch the kids in the pool and let jon rest some more..he didnt make it into the chair at all..we'll see how tomorrow goes..again he's worried that tomorrow might be worse then today PLEASE pray its the opposite!!!

LDS church news article

here is the article:
After accident family, friends rally

Motorcycle accident leaves young father without use of arms or legs



--------------------------------------------------------------------------------


May 27, 2006

RIVERSIDE, Calif. — As soon as his chin hit the ground, Jon Hales knew something was terribly wrong. Though he was traveling at a very slow speed, his dirt bike hit a rock "just right" to send him over the handlebars.


Jon Hales, surrounded by family and friends, reads statement during fund-raiser organized and supported by Church members and others.

Photo by Dacy Nottingham

During a Church News telephone interview, Brother Hales said he felt the pop and crack in his neck. He said his first thought was, "This is what it feels like to break your neck." His next thought was calming: "Jesus Christ has suffered, and through His atonement He knows exactly how you feel and knows your pain."
That testimony and the Christlike service of others have sustained him and his family through the ensuing weeks of rehabilitation since the March 16 accident as he strives to regain the use of his arms and legs, as well as endure continuing pain.
Brother Hales' wife, Christina, said help has been generously given from members of their Orangecrest Ward, their Riverside California West Stake and beyond.
A group of high school students is among those.
Having taught early morning seminary for three years while living in Northern California's Bay Area, Brother Hales was a natural when a class in Riverside needed a replacement teacher in January. A video-game artist by profession, he had served a mission to Osaka, Japan, and graduated from BYU.
Though he taught them for only a short time, the 16-or-so students in his seminary class rallied to his assistance.
Sister Hales said they tended the couple's four young daughters, tore up carpeting for the installation of more wheelchair-friendly wood laminate flooring, helped with yard work, and delivered fliers advertising a fund-raiser for Brother Hales. At the fund-raiser, they did face painting, supervised a "bounce house" attraction for children and helped with food. The youth also visited Brother Hales in the hospital and the young men participated in taking the sacrament to him each Sunday.
That, said Sister Hales, along with similar service from many other Church members, has been a great blessing to the family.
Brother Hales said, "The amount of support that has been forthcoming from the saints has been overwhelming. I know I have thousands of saints praying on my behalf."
Meanwhile, he has earned respect for his faithfulness. He is the home teacher for the family of Dacy Nottingham, and Brother Nottingham said that during a visit to the hospital, his family received a home teaching lesson from Brother Hales.
At the time of the accident, Brother Hales had just left his job as the art director for a game-development firm to start his own related business. As he lay paralyzed, but conscious following his fall, another thought weighing on him was that he needed to recover to make it to a convention the following Monday to launch his business.
That didn't happen.
So it was an additional great blessing when family friend Celesta McGee spearheaded the fund-raiser, with the help of Sister Hales' sister and brother-in-law — Heidi and Matt Robison, and others.
So generously supported, Brother and Sister Hales are moving forward with faith. Though the pain remains severe, Brother Hales has a bright outlook as he has regained some use of his arms. "I honestly feel that someday I'm going to walk again," he said. "I feel extremely blessed already, but I'm going to work hard with what the Lord has given me." — Greg Hill


FRONT PAGE + ARTICLES + FEATURES + VIEWPOINT + NAUVOO
© 2006 Deseret News Publishing Company

pain doctor called..

so i paged our pain doctor..he said we'll go ahead and take jon off the effexor and get him on a different one..and that we could raise his nuerontin from 600mg 3x's a day to 600mg 4x's a day..

made it thru the nite...

at 1030pm jons blood pressure was high with a headache..eunice cath'd him and he came out with 800 cc..which is a lot..then it went back down..

eunice was cath'd him at 1230, 3 and 7am..he seemed to be okay thru the nite which is great...

this am he is in pain..its a different kind of pain..we decided to go ahead and come off the effexor..so now he's probably having the effects of coming off the drug..his pain is like an "icy kind of pain" he says its SOOO hard to try to explain..im looking at him now its 930am..and hes just lying in bed with sheets over him...he feels really cold...his eyes are shut..his comment this am when i asked how he was doing was "im still alive"...i can only imagine what he's going thru right now..

its incredibly hard because we havent been able to manage his pain..it would be a completely different story if he were up in his wheelchair moving around and about..but he's just not doing that..its almost like living with a terminally ill person..i fear for his life everyday ESPECIALLY when he signs of autonomic dysreflexia..because the average life span of a SCI patient is only 10 years..every nite i've been crying because i know of this fact..i think if christopher reeves and thats about how long it was for him..BUT i then DO think of Patriarch Ruston, and how he's going on year 17!!! that gives me hope!!! last nite i decided to have sarah come into my bed..i slept the best i have since jons been home! i think just having someone else in my room makes a WORLD of difference for me! i didnt cry as i went to bed..it was wonderful!!

please pray that his body will come off the effexor and that his body will return back to normal..and that we figure out whether it was the effexor or if something is going on with his bladder..we have to really keep a watchful eye on him..

update...

okay so here is the update..after 3 hours at the doctors..we have an appt with the Urologist for next wednesday at 315pm..

We're debating on whether or not to take jon back off the effexor..this may have added to the problem..also were going to watch the cathing and do it more then every 4 hours..we need to rule out what is causing the dysreflexia..
were not sure if he's have badder spasms due to the effexor or if his bladder is swollen or if he has a cyst in the bladder..it could be a LOT of things..

Ive learned that its VERY important to DO YOUR HOMEWORK and know what your talking about BEFORE you go to the doctors..to not rely on the info the doctor has..our primary care physican isnt very familiar with autonomic dysreflexia..so we had to kind of guide him thru it..i didnt think we'd go anywhere today other then get an appt with the urologist..which initially he was going to get an appt that WASNT for 2 weeks!!! i immediately told him the urgency and that this could lead to a stroke or death..its IMPORTANT that we FIND THE ROOT of this dysreflexia..were not willing to wait 2 weeks to rule out or "just see" if the bladder is the issure or not..

so anyway- he was able to move the appt up to next wednesday instead..which obviously im MUCH happier about!!

so it was either go thru that all day OR go to ER and have the same thing happen there..he seems to only have the pounding headache and his blood pressure sky rocket when he has bladder issues..like when he needs to be cath'd..so thats what we'll work with and we'll decide together if he should or shouldnt go off the effexor..

PLEASE pray that all goes well thru the nite..that the caretaker will stay awake and refreshed..she was able to sleep from 11am-5pm so she should be okay..pray that we find the root of the dysreflexia..its SOOo serious and not something you "just wait" to see what happens with...

im SOOOOOOOOOOOOO grateful for the amazing POWER of technology!!! im SOOOOOOO grateful as my PB blessing states "you've been blessed with a keen mind"..i will forever strive to live my life righteously so that i will be given as promised that blessing of a keen mind..because of that i have NO DOUBT thats what helps me thru ALLL of this madness..knowing what questions to ask, what things to look for, what things to learn about, what things to pay attention too..the ability to learn quickly..i know FOR SURE are because of my PB blessing..im so grateful..

as far as his pain goes..he's down to a 6 or 7..which is why were worried about taking him back OFF of effexor..his pain may flare up again..

THANK YOU to those that have watched my girls today-- im also learning that this is DEFINALTY a day by day thing..im so grateful i have friends that can take my girls into their homes!! thank you!!!!

to help you realize just how serious this is...

Autonomic dysreflexia can develop suddenly, and is a possible emergency situation. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.

Autonomic dysreflexia means an over-activity of the Autonomic Nervous System. It can occur when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure. Nerve receptors in the heart and blood vessels detect this rise in blood pressure and send a message to the brain. The brain sends a message to the heart, causing the heartbeat to slow down and the blood vessels above the level of injury to dilate. However, the brain cannot send messages below the level of injury, due to the spinal cord lesion, and therefore the blood pressure cannot be regulated.

VERY worried....

we are very worried about jon right now..during the nite time his blood pressure kept raising to 197..he's usually only 97/58...he continues to have a serious headache and burning throughout his body...these are signs of autonomic dysreflexia which SCI patients are at risk of getting..which if this keeps up could lead to a stroke...
we are very worried right now..we are now going to cath him every 3 hours instead of 4 hours..we made an appt with his primary care physician which is at 220pm..he's just staying in bed trying to stay calm and relaxed..

WE NEED to find out the root of this problem...what is causing all of this..this is why we have the appt with the doctor..PLEASE pray that we find the root..this could be potentially very dangerous..

his pain level is at a 6 or 7..his nausea is better..he ate a bowl of cereal, yogurt and applesauce for breakfast..so thats good.

i will continue to do my best to keep you posted..

meanwhile i was able to go running this am with kristen, cindy and vicky..like the good old days..were vicki and cindy leave us in the dust! but kristen and i were SO proud of ourselves!! we both managed to STILL run our mile without stopping! then we did our usual walk a little run some more, walk a little and run the rest..it was SOOO awesome!!! we thought we'd have to start ALL over ..but were doing great!!!

craziness..

well tonite was pretty crazy...kim stopped by to check up on jon...looks like now we'll be cathing him every 3.5 hours vs every 4 hours..were going to have to change the cath equipment we've been using to something different..thats another thing i'll have to figure out..

then dacy came over to do range of motion with jon..thanks dacy! the elders quorum i believe is in charge of that with him-- which will be SOOO nice to always be stretched out like that!!!

then the rest of the night was trying to keep 4 girls quiet and ready for bed, then running back downstairs to help with jon, running back upstairs to help with the girls, back and forth..its now 830 and i think ive got the girls done..so now its back to working with jon..its only 830 and im ready for bed!!!

jon seems to be a little bit better..tonite he has another effexor and then tomorrow nite we start to double up on it..so we'll see what happens..thanks again for all the tips on how to stop nausea...it will help!

oh great..the PT girl called..i guess shes newly pregnant and so the doctor is taking her off work for 2 weeks..so now we get to "wait and see" if someone else will show up at the house..tomorrow she was suppose to come..but she doubts anyone will come since she just found out she has to switch everything around..then monday is a holiday..so now we wait longer again..i can HARDLY wait to get him into some real therapy!!! i feel like NOTHING is happening with him in that regard...

well - back to business..

hes feeling a bit better...

i used celene's lemon in water trick...we just slept in his wheelchair in his pressure release position..me and scott propped him up on the couch so we could both get things done! it worked!!

he was wiped so we put him back to bed after he slept in his pressure release position..then i had to give him meds..he also was trying to work with scott to send an email back about a HUGE possibility regarding our business..it took jon SOOO long to do it!! its SOOOOOO hard to concentrate and focus on just replying to an email!! he finally gave up for a few minutes...then i fed him a whole can of soup..then i gave him jelly beans that the loveridge family sent for us back in easter time..were JUST NOW going thru that candy guys! so thanks!! the sweettart jelly beans are SO YUM!!! somehow that helped jon to focus a bit more..it still took scott and jon a good hour to write a couple paragraphs..but atleast its done now!!

he's still in his bed going over a few more things with scott..i think he'll have a better nite tonite..he's sounding more like himself so that is good...

thanks for all the tips!!!!

its a no go on the doctor visit today...

well we've decided its a no go for the doctor visit...jon is in no shape to go very far..that fact that he made it to the wheelchair is hard enough...he's having double vision and just nauseated still..
celene- i did the lemon in water thing..we'll see how that goes..and yes i make him eat..he's had applesauce and yogurt and half a piece of bread all day..so we'll see how the rest of the day goes...

so looks like we'll all be home today..

still nauseated...

he's tried the anti-nauseated med's before..this same thing happened when he started the baclofen..the anti stuff did nothing for him..

scott and i got him out of bed and into the wheelchair..he passed out a couple of times..but we knew what to do and got him back right with us...im REALLY nervous about getting him to his doctors appt though...but he wants to go..we'll leave in just a few short minutes here..

i'd like to know if there are any tips besides more meds..since the anti stuff didnt work in rehab..ill definately try the peppermint thing!! thanks so much!!!!

he seems to be getting a big headache too..i just cath'd him to see if that helps it..it comes and goes it seems like..but he's trying his best to hang in there!!

scott will be here with all the girls till i get back..the caregiver will be sleeping until i get back then she'll take over with all of jons needs..

NAUSEATED today...

today jon is VERY nauseated..im not even sure i spelled that right??

he said last nite he went to sleep fine..then at about 3am..he woke up with a POUNDING headache- worse then he's ever had before..so he called in for eunice the caregive to check his blood pressure which SHOT up to 187 over something - thats SOOO high ESPECIALLY for him who's usually at 97 over 58!! so they immediately went ahead and cath'd him and it went away right after that..again..a sign of autonomic dysreflexia..we think it was because he had a HUGE rootbeer from wendy's for lunch earlier that day..

this am he's just feeling soo sick to his stomach..im pretty sure he's going to just stay in bed all day today..he hadnt eaten any breakfast..he hadnt even taken his 9am meds yet..so at 1030..i just put them in applesauce..a trick i learned at the hospital and he took them..so now he's nervous he'll throw them back up..and since he CANT really even throw up- he's pretty nervous..he's just trying to sleep right now..

its hard to watch him suffer like this..he so wants to be up and moving..but his body wont let him right now..it sounds like the effexor is going to take a while to get use to..this is also making it more REAL of JUST HOW SLOWWW this process is going to be...

i think ive realized why im sad at nite when i go to bed...because im upstairs and he's downstairs...he's SOOO tired at nite..we dont have much time to chit chat about the day..so we end up just saying our companion prayer and he goes to sleep and i go upstairs..anyway - its no fun...once the elevator gets installed and the shower finished it will be atleast nice to be in the SAME room!! im SOOOO thankful were getting him upstairs..i could in NO WAY live the rest of my life with him downstairs like this..

im so grateful your thinking of me and our family daily..out of your VERY busy lives..your still thinking of us..please pray that this effexor will work in tune with his body..that he will not be so nauseated..that it will help to eleviate the pain..it will have purpose...please pray that individually and as a family..we will find the lessons we are to learn from this...that this trial our family is going thru will not be but for a purpose...that we will grow...were SOOO grateful to hear how everyone is thinking of their lives differently and making changes for the better, praying with more intent and sincerity, rethinking about how they are living their lives...that in itself is SOOOO powerful to jon and myself..it again as i always say..makes this trial worth going thru for us...if we can promote positive change like that...how honored are we to be the catalyst..again we are NOT the ones changing lives..we are only the ones that are softening the hearts of others so that the Spirit may be able to dwell within them..what an honor and priviledge to have that kind of power and capability..we thank you for not feeling sad for us..but that your all doing positive things..and going on about your lives with a fresh state of mind and grateful for what you have in your home..

last nite i was having quite time with rachel and she asked if she could sit on my lap in daddy's wheelchair because it makes her feel happy when she's in daddy's wheelchair..it was soooo adorable..how sweet she is to think of that!! after we finished she said..mom your like my best friend! i told her..that is neat that she feels that way..but actually she has MANY best friends..and i get to be her mom..and ONLY I can BE her mom...and thats WAYYY better then just being a best friend...i think its important for kids to know they can have a ton of "best friends" but only ONE mom..and thats special..thats even better then being a best friend..she totally got what i was trying to convey to her and said "ah ya thats even cooler!" im SOOOO grateful that i have the caregiver to help jon and someone here at 730 to help put kids to be so i CAN have one on one time here and there with the girls..i can really see them open up about things..and sarah could hardly wait till it was her turn next..so THANK YOU to everyone who helps me keep my daily life going so that i can still try my best to be "their mom"...

if anyone has any tips or advice on being nauseated besides good ol sprite and chicken noodle soup..let me know...

getting ready for the night...

right now jon is getting ready for the night..i think he had a fairly good day..i believe he got a lot done with his dad too..
we made spaghetti for dinner real quick then jon started his bowel program..eunice from kenya the other 24 hour caregiver came at 8pm sharp..she's just jumped right in and doing her thing...
he's been really tired today..so he's looking forward to a good rest..he said his pain is down just a tad..but not much..but he was happy he spent the most of his day in the wheelchair again!!
jon and his dad played a game of pollyana - jon won! WOO HOO!!

thanks for your prayers- im so grateful he got a blessing last nite and that everyones prayers are working for him..yesterday was SO hard for all of us!! so thank you for this small little relief we've had today..i hope it keeps getting better..im SOOO sorry that my blog is always about how difficult and painful it is for jon..i hope its not depressing..im sorry im not good at always making it positive..i know that the days ahead are going to get better...im really realizing that some days are good and then some days are bad..it doesnt get good each day..its like 3 steps forward and 1 step back...

THANK YOU for those that leave posts!! i love getting them and reading them!!! thank you for EVERYONE for what they are doing..im sorry im not able to put names in here of what people are doing..it was getting a little uncomfortable for some people that were being named..so ive opted to just not name anyone who's helping - but you all know WHO YOU ARE!! and i thank you soooo much!!!! keep praying for jon..that the Effexor WILL WORK with his body..it will provide the relief that we are STRIVING to find...from what i understand..he's still on low doses of all his meds...he could go higher..so we'll see what happens..tomorrow he has a follow up appt with Dr. Kounang who was the doctor over him during his stay in rehab...hope that all goes well..jon will be a little bummed that he's still in the same condition as when the doctor released him...but such is life..thats the way its going for us right now..we'll do what we can..thanks again!!

a little tired..

jon is up in his wheelchair..he passed out a couple of times REALLY shortly though..so thats good..hes been working with dad on the computer cranking out this article..he says is okay but SOOOOOOOOOOOOOOOOOOO tired...poor guy!

we just wanted to give a shout out to Kristi Anderton - welcome to the 21st century! SO GLAD you have your computer and DSL!!! your life will change forever!!! i cant believe we've had DSL back since 1998!!! were so nerdy-i know!!

improvement

Jon says that he slept thru the night..and this am he says he is at a 7 if he doesnt move and shoots straight to an 8 if he does move...
his father is here now and so he wants to work with his dad..so im on my way to put him in his wheelchair..we'll see how the day goes..

Blessing..

I left jon..sadly in horrible pain..i was rubbing his chest encouraging him to ask for a priesthood blessing..he said that he wants one and then he said "im so sorry honey, but your hand is KILLING me"...to not be able to even touch him- now THAT is SOOO hard to handle...you can just LOOk at him and SEE the pain with your own eyes..his face is red, tense, his eyes are like a filmy glossy look to them..it just hurts to do anything...

I cant seem to figure it out, we've been cathing him, he has no urinary tract infection, his bowels are working properly...none of those things are making the pain worse...i just dont get it..im thinking its a matter of finding the right combination of drugs that will work with his body...

He received a blessing while i was gone to katie's bridal shower...Kim said that he felt better after that and they got his program done, and washed and ready for the evening..im SOOOO grateful for kims help!!! THANKS KIM!!

I hope he's able to sleep still tonite..he did a LOT of sleeping today-i hope i can get some sleep too...

I think im still in mourning of losing the "old jon"...the "pain free -full of life" jon..its so sad but so true...i hope that you all kiss your spouses and loved ones and appreciate how pain free and full of life they are...we cant take those kinds of things for granted anymore...it REALLY is like the plan..coming to earth to appreciate the opposites of things..we dont REALLY appreciate the good until we've seen and felt the bad...im comforted to know that my Heavenly Father loves me SOOO much...HE knows what its like to watch the one you love suffer...how thankful i am to pray to Him and feel His love and undestanding..that brings me peace and hope at this dark hour..

still miserable..

jon is still miserable..he has no plans of getting into the wheelchair today...the pain management team called back and said to keep him on the effexor for 3more days, then on the 4th day double up the dose..then we'll go from there..
i asked what happens if he's still a 9 out of 10 in 2 or 3 days? they said send him to ER.. BUGGGGGED!!!!! then they said that he'd have to either to ER or come into the office for his appt which ISNT until june 16th?!?!?! HELLO!! so they moved it to june 6th "was the earliest they had"..anyway- SO frustrated right now! they said if anyone calls they'll plug him in..doesnt make sense that they cant "squeeze" him in when his level is sooo high!!
so i guess thats what were doing..watching him suffer endless, shivering, not wanting to move..it hurts sooo much to even move him up and down in the bed!

the PT and OT girls came...they said he's doing good physically..that he has a lot of potential..so that was encouraging..if we can JUST get this pain managed..he'd have WAY MORE potential!!

so thats where we are at..sorry im not really upbeat and positive..its all i can do to hold myself together right now..

LOVE getting responses to my posts..

i just wanted to say i LOVE getting responses to my post and emails..i think everyone thinks im getting a ton everyday..but im not really ..i get one email typically..and i just wanted to say THANK YOU for posting a reply or for emailing me..if you feel inspired to do so PLEAASEEEEEEEEEE do so!!!! they TOTALLY uplift and encourage me to keep going!! so please please feel free!!

not good..

today is not good at all for jon..his pain is so bad he's shivering or quivering his chin again..thats how we know how bad it really is..i dont know what to do..ive contacted his pain doctor..they are going over his file right now..the nurse of that doctor wants to up his effexor..im not sure about that..since once he started taking that it went up!! but im sure they know more then i do..all i can do is follow the spirit which is WAY stronger then any doctor or text book...but working together is the best thing to do right now..
he looks REALLY good though - the caretake gave him a bath, washed his hair, brushed his teeth - he looks so handsome!!
i made it to my social service appt..it will be good for me..ill see her on a weekly basis..it will be good for me to "check out" of my crazy life to just focus on my feelings once week..so im happy about that..

im waiting now to see what the doctor is going to do about this pain..i just dont get it!! why does it keep getting higher and higher??? im afraid of having to do invasive things like a morphine pump..i just keep looking up more and more about central pain online to see whats out there, whats been done, etc...its enough that he's paralyzed right now..but to watch him suffer endlessly..something has to give..

as i was driving on the frwy to my appt..i thought how the frwy is like my life..if i just keep going down the middle lane..ill make it to the destination..if im too far to the fast lane..it can get out of control and i can have an accident..if im too far to the other side..ill veer off and exit the frwy completley...
thats my life right now..allllll i can manage to do is STAY IN THE MIDDLE LANE!! i cant let my life get so crazy and out of control on the one side of the frwy- cuz i wont make it..i'll have an accident...i cant veer off and exit..those exits are like trials..each exit is one trial in our life..if we choose to exit off because the trial overtakes us..we will have a harder time getting back on that frwy middle lane again..BUT if we do exit we can ALWAYS come back!! there's an onramp to the frwy again!! so as i drove, i thought about each exit and each trial ive had..then i came to the 91,215,60 interchange and realized THATS my trial right now!! a big one!! YIKES!! BUT if i just stay quietly in that middle lane..ill get to my destination..which is to return to Heaven with my Heavenly Father..

anyway - not sure if that made any sense!!!

ill keep you posted again -

really worried...

right now both jon and myself are really worried for tomorrow..he's been in SO much pain today..solid 8.5 all day today he said..he only lasted one hour in his wheelchair today..we had to move his bed into the livingroom again so he could celebrate rachel's bday with us..

we cant seem to figure out why his pain just gets worse all the time..were going to take him back off the effexor and see if that will work to where he was again..atleast back down to a 7 or 6...
the pain management specialist was not in the office today..i left a message..i will FOR SURE call in the morning to figure out a plan..
i hate seeing him in so much pain like that..and its SO worse when someone comes in and asks "how ya doing?" and he says "GREAT!" i just want to scream inside!!! UGHGHGHG anyway- so just know..if he says great..its not always great..you can watch for signs like..he doesnt talk to you very much..has short answers..his arms are close to his chest, he's shivering like he's cold..those are all very clear signs that he is in pain..he would never tell you that he hurts too much to visit..so if you notice these signs..please make the visit short...

ive just watched jon lay in pain all day today..even his face is blotchy red..he's been shivering A LOT today..hands constantly on his chest curled up..all those signs up above.. he even tells me he's worried about tomorrow..what will happen..

regardless of all this..rachel had a wonderful bday!! dont you feel great when you get your child that ONE present they've been wanting!!! i got the biggest hug from her!! she went over and squeezed jons hand so hard - it was touching..thanks again wendy for putting that together for me..

well its time for me to start the bowel program with jon..PLEASE pray for the pain to subside and for us to figure this thing out...

Hanging in there..

Jon isnt doing too well today..he's back to an 8 out of 10 pain wise..its really bad burning...he started having signs of autonmic dysreflexia..his blood pressure shot up from his usualy 97 to 158!! scary! we knew something wasnt right!! He was also very clamy wet..another sign..
i immediately emptied his bladder..he had a lot..then we waited and took his pressure again..it had dropped to 97 again..WHEW!! so ill be keeping a close eye on him..he said he's in SO MUCH pain that he doesnt want to get out of bed..he's also VERY drowsy and a bit nauseated..i told him to just rest..since its rachel's bday..he can get in his chair later and celebrate with us with some energy..

i have a link to some photos from the fundraiser - THANKS DACY!!! they are awesome!!
feel free to check them out..

http://dacymedia.com/hales/

monday morning..

today is now monday..anna's fever is totally gone..wierd that the girls just get a fever, then sleep it off, and then they're better...

it was SOOOO nice to be able to actually sleep!! i was able to get up with the older girls, get them ready for school, then get the younger two dressed for the day and ready to be picked up by teresa..

i then left to go running! SO NICE i got to do that!! the Hales weight loss competition is NOW ON!!! Robert - look out!!! so far, me, robert, sandra, katie and scott are in the competition..any other hales wishing to compete..join in! i went with cindy and erin... kristen thompson is my usual running partner..she couldnt come today..but she'll start coming with me.. we usually go at 9am..that seems to work best for everyone with school kids and what not...i had worked SO HARD to get myself to where i was before the accident..jon is making me start up again..he knew how important it was for me and that i had made a goal and was acheiving it--so he doesnt want me to let up on that..

today jon is in a LOT of pain again..he says each morning he wakes up in more pain then he was the morning before..so i just dont know if its the effexor or what now??? i put a call into the pain management doctor..he's not in the office today..so i left a message for him..so we'll see what happens with that..its 1030am and he's just been lying in bed..he usually does so till about 11am..then we transfer him into his wheelchair..his PT is coming at 12noon..so we'll see what happens..its SOOO HARD to walk in and look at him sleeping..knowing he'd rather sleep then be awake and feel the constant burning pain..he says that he'll stop taking the effexor and we'll see if his pain decreases or stays the same or what..then we'll know if its the effexor or not...MAN i wish we could figure this out already!!!!

well time to get things going..pray that we find a solution to his pain..i dont know why it KEEPS increasing...

peaceful sunday..thankful for prayers

today was had a peaceful sunday afternoon and evening..i KNOW its because you all ready my last few posts and started praying like crazy!!! well i have to say it TOTALLY worked!! even though i only slept for an hour after church today..i KNOW without a doubt it was because of the prayers in my behalf that gave me the strength, courage, peace, soft spokenness, old christina back!!! THANK YOU!! i felt more like myself then i ever have in the past 9 weeks..
after dinner we wheeled jon into the family room so the girls took turns sitting in bed with him..it was soo cute!

sadly..jon says the burning pain is actually getting worse now..he's not sure if its his bowels causing problems or the new effexor..he told me earlier it was really low..we seem to think that when his bowels give him issues..thats when the pain comes..yesterday and today he had really good bowel programs..so tomorrow i feel will be a real good test to see how he's doing..if the effexor really IS helping or ISNT helping..it will have been 3 days he's been on the effexor so we should know soon enough..

physical therapy is FINALLY coming tomorrow at 12noon..so we'll see how that goes for him..i feel like he's gone backwards because he hasnt done it for over a week now..

today as i was helping him undress..i couldnt help but notice just how much weight he's lost..it makes me just want to cry...i cant believe it can go SOOOO fast..i worry about it soo much...he DOES thankfully eat EVERYTHING we give him..and he does feel hunger now..anyway - to see your spouse change like that SO fast..its a bit to handle..im just SOOOO grateful that it doesnt get to him..this whole thing doesnt get to him..im amazed when he says "im almost excited for this trial to see what is in store for me and my family!"...it leaves me speechless!! i dont think thats something i'd EVER say!! he's just so awesome...how lucky i am to have someone like him..

tonite katrina came at 8pm to start working..she told me that for 24 hour care she charges 200 per day - YIKES!! so its gone from 150-200 now..UGH..so she said she's here till tuesday nite at 8pm when hopefully eunice will be back..she said that eunice will be able to do monday nite at 8pm- saturday nite at 8pm..then katrina could do saturday nite 8pm-monday nite at 8pm..we'll see how it goes..i REALLY need to work on finding something longggggg term...we cant keep paying this kind of money..in one hand i TOTALLY need this help..and the other hand its SOOO much money...i dont know quite what to do..
AGAIN if ANYBODY knows ANYONE who wants to live full time in our home for a few years- give me a call!!!

thank you again for all your prayers on our behalf..thank you for alllll the dinners, emails, cards, women helping with the girls, women helping to clean my house, women who are doing my laundry, those that are doing yard work, the pool, those that are helping to get us to church each sunday from now on, those that call before they head to the store, and a SPECIAL thanks to celesta for putting together and hosting rachel's surprise bday party and soon anna's princess bday party...i hope everyone has a friend like celesta has been to me!!

time for a good nites sleep!!
ps im going to try to see if jon will post his thoughts every few days and post them online for everyone to read..im sure your tired of hearing this whole trial one sided!!! ill work on that with him..

totally drained..

well last nite didnt go quite as well as i had hoped..i got jon cath'd and his last meds in him by 1130pm..then i went to bed only to be woken up frightened because sarah was standing right by my bed! i thought it was a stranger! it shocked scared me!! so she hopped into bed with me, then about 30 minutes later the wind was blowing thru the window and SLAMMED our masterbedroom door shut - SCARY again!!! then 30 minutes after that becca started crying and her crib is right against our bedroom wall, so she kept making her crib hit the wall all nite long, then it was time to get up already, i cath'd and rotated jon, gave him meds and a piece of bread -- it took me 30 minutes to do all that, then went back to bed only to be woken up AGAIN by becca, i decided to take her out of her crib and put her in a porta crib in sarah's room so i could sleep..
SO i only slept from 5-7am when the rest of the girls woke up..the kennedy's met me at 8am to get the family ready..wasn't quite enough time- but oh well..we'll have to fine tune that! i got jon cath'd and cherie fed him breakfast and i gave him meds, then i ran upstairs to throw something on and back downstairs to help get jon dressed..then load him in the wheelchair to load him in the truck..
we were grateful to see our last "outer darkness" back row left for us!! thanks everyone!! it was great to be there!!! we noticed all the primary kids constantly turning back and watching jon..it was too cute..
we didnt quite make it to sunday school, but we did make it to our other class..i went into elders quorum and taught them all how to give jon a "pressure release" so they could do it from now on..
as we left church everyone was talking to jon and saying so many wonderful positive things..it was so great! the primary and the youth were the best though have to say!!! to see how jon has impacted their lives - im speechless..its so tender and so loving..how he can quietly affect their lives..jon LOVED shaking hands with all the primary kids!! it was SOOO neat to see all of jons seminary students hugging him and shaking his hand and gathered around im - it was just awesome..jon felt SOOOOO loved by SOOOOO many people..its overwhelming..
were so grateful for so many people who care and want to help..leslie hornberger lives around the corner from us..she asked if she could do anything..and that she always drives by my house and just wants to walk in and do something..i told her I LOVE THOSE KINDS OF PEOPLE!!!! i love people that will just stop by ..walk into my house and find something to do..there is constantly something that i need help with..so i told her..if she drives by and has time..PLEASE dont hestitate to come in - i always have something i need help with!! same thing happened with kristen thompson..she stopped by last nite to drop off anna's carseat..she asked if she could help with anything..and me being SO BAD at asking..i told her.."nah..ill be okay" when really inside i was screaming PLEASE COME IN AND HELP ME!!! i dont know WHYYYYY that is sooo hard for me!!! i feel like everyone has their own lives and i dont want to bother them..anyway- i feel like im constantly bringing this up..like i told kristen..its maybe one of the "lessons" im suppose to learn from all of this..
while i was sitting in relief society and the president was explaining about how they were going to help "the hales family"..i sat in the back row in amazement of all these wonderful ladies that were going to help in any way that they could..it was TOTALLY uncomfortable for me..but soo wondferful at the same exact time...its very humbling to sit there and have others help to organize and find ways to help you...it was then i realized HOW crazy my life is..the president made the comment "we all need to help them in their new reality"..i think it hit me there too..this isnt a dream anymore..its our new way of life..i sit here and think..if i had to do what ive been doing since saturday morning all by myself..i dont know what would happen..i fear what would happen..but knowing that i have family, friends and ward members to help lighten that load..wow..i dont even know what to say..other then were just so grateful..
we made it home from church..anna fell asleep in the car..i knew something wasnt right with her..she felt really hot..i took her temp and it was 103.5...UGH so i gave her some liquid, motrim and we layed her down..poor thing..i hope its quick like the other 2 girls were..
well its now 2pm..i have one hour before i have to be back up again getting jon some meds and rotating him..he is WIPED out from today - as we all are..its for sure going to be super quiet around here- atleast we hope! hard to tell with 4 girls! he's a little woozy still from this new effexor..but we seem to think its working..jon will start physical therapy in the morning FINALLY!! his poor body is probably SOOOO tight though..we'll see how the day goes..

sweet dreams..

well its now 11pm..jon said to wait 30 more minutes then cath and rotate him in his bed..then he'd be good till 4am..so thats what the plan is..i JUST finished with him at tad before 11pm..so i figured i'd hang out on the computer till 1130pm..then hit the sack..he was able to have bowel movements and i was even able to wash his hair..
im SOOO SORRY SHELDON but we decided to shave the rest of his goatee off..we just didnt feel comfortable walking into church with the goatee for the first time..it will grow back im sure..we hope your not mad!!??

the girls went to bed smoothly for me - so that was nice..i got all their church clothes and shoes ready for them when they wake up..i even have jons ready..i hope he doesnt get too hot in them..if he gets too hot or cold it brings on serious pain..so pray that he's comfortable tomorrow!!

well i cant believe i made it this far with no help..i could NEVER go forever like this though -- i feel like ive spent 9 weeks at disneyland everyday- its really wierd!

ive decided to start up my running again..i will need to either do it in the morning after the 2 girls have left is probably the best time..jons not happy about the idea of my going at nite..even if it is with a few girlfriends..neither would my dad nor my father in law be happy about that! So i will shoot for early morning..the older girls can either stay here and hang out or come with me and ride their bikes..so if anyone wants to join - im starting monday at 9am! as soon as the girls are picked up! i need to start running to help me emotionally and physically..i use to HATE running..but i started in january..i was so proud of myself..so i want to get back into it again..

well only 15 more minutes to go..guess ill go check my email..thank you EVERYONE for your constant prayers..we TRULY TRULY feel them..i still cant believe this is happening to us..sometimes im not even sure if its "refining me"..i feel like i could be SO MUCH better...sometimes i think..man it would have been so much easier if it was me instead of jon! to have the head of your home brought down so far like this..its a constant uphill battle...one that i NEVER would have imagined we'd face..ever...were SO grateful that we live so close to family (30 minutes) and were in SUCH a great ward..have such great friends in and out of the church that truly care for us..we will get to the top of this uphill battle..literally ONE day at a time..its a miracle to see where jon is right now..after just 8 weeks..truly - a miracle..

ill be up all nite..

Tonite i will be up all nite tending to jon..the person that the agency was sending over wasnt going to get here till 9pm..and doesnt know how to cath someone..so i'd end up staying awake to "teach" them anyway - no sense spending money just to teach someone!! SO that means i get to get up every 4 hours to help jon..PLEASE pray that i get sufficient sleep during those times im asleep!!! ive already managed to get everyone fed, bathed, nails painted, sunday clothes layed out and ready for bed..now i will spend the rest of the night helping jon with the bowel program and getting him settled in for bed..im hoping i might be able to atleast wash his hair..im by myself so we'll see how far i get! yikes!!
today was a good day..jons pain level SURPRISINGLY is down to a 4 or 5 he said!!! were hoping his bowels function today so that that kind of pain is gone..otherwise he's doing rather well!
we made it to rachel's surprise bday party- she was totally surprised!
we do have someone that will be here tomorrow nite at 8pm to 10am..and then that person will come back from 8pm-10am again..then hopefully eunice will still come back and be there tuesday by 8pm..ive been under TONS of pressure to make things run smoothly..this is the most difficult thing EVER - to be pulled in 30 different directions and feeling TERRIBLY guilty because im not able to help jon or help or be with the girls..leaves little time to even think about myself! its just something im learning to live with..while i do take 15 minutes to escape on the computer..were all trying to work together and THANKFULLY the older two are being sooo good!! i feel like all of you are praying for my 2 older ones to be good- it must be working!! they are so helpful!! ive tried to teach them instead of taking things away that the little girls are playing with..that they older 2 might not want them playing with..instead of taking and saying NO thats mine!! i've taught them to slowly take it and say "no thank you" and if needed give the younger two something else- i cant TELL YOU how wonderful that works!!!!!!! if there is any struggle- all i have to do is say - "say no thank you" - and they do - rachel especially is being so helpful to me with the girls..so thank you for praying specifically for them..i really feel and can see the effects of their behavior!
well its now nearly 8pm..i need to start getting jon ready for his bowel program, get that done..switch to get the girls into their beds for the nite, run back downstairs to finish jon with his program, try and wash his hair, run back upstairs to make sure everyone is in bed, run back downstairs to get jon transferred back into his bed from the wheelchair, get him cath'd, meds and ready for the night..then pick up the house, do the dishes, set 2 alarm clocks, say prayer and fall asleep..wish me luck!!

Friday successful at Pain Management Appt.

we made it to the pain management appt yesterday..it was about a 45 minute drive..i was SOOO worried about jon passing out..i had to keep looking at him and watching him carefully..he made it there and back okay...
the doctor was fantastic..he was a young doctor..about our age..he had a 7 year old daughter..he was VERY optimistic about controlling jons pain and very excited to see jons progress in just 8 short weeks!! he too believes its the nerves all wakening back up..the plan now is that he will try effexor..its an antidepressant..he's already got him started on it on a trial basis..if it works then we'll get some at the store prescription style..eventually he'll start coming off the baclofen too..so thats great news! and he'll come off the dilaudid too - which is even GREATer news!!! so were excited to see if this will work for jon - PLEASE pray that it does!!
sadly my caregiver's grandmother passed away last nite- so again im scrambling for help - AS USUAL!! i dont have anyone for tonites shift..i do have someone from sunday nite and monday nite shifts only..then eunice from kenya said she'd come back tuesady nite at 8pm..so we'll see..so now im not able to have anyone again during the day ..we'll just have to see how it goes - but im pretty nervous! all four girls and jon alone here at home..
today is rachel's surprise bday party..i have someone coming to stay wiht becca and anna so they can nap..then we'll follow rachel and sarah to her bday surprise swim party..so that will be fun for jon to participate in..
brother and sister kennedy will be here tomorrow morning at 8am to help get our family and jon ready for church which starts at 9am..hopefully that all runs smoothly! i will do my best to prepare everyone tonite for tomorrow morning..i think that i will have to be up all nite do give jon meds and cath him..the girl that they are sending over said she's never cath'd before - GREAT! so hopefully i'll have enough energy to go to church...so nobody make fun of me if im sleeping..because i'll only have had a few hours!!!
the girls are doing well..they have been SO nice to eachother lately...especially the older ones..i feel prompted to spend one on one time with each of them..that always helps to bring harmony in the home and open the lines to communication..so i will work on that this weekend and thru the week..i cant believe they are out of school on friday at 1230pm! YIKES!!!
my long time friend wendy (terry) along with her mom will buy and wrap and mail all of the girls' presents for bdays - i just send a list and they take care of it - SO HELPFUL!!! that takes a load off my mind!!! rachel's packages JUST arrived! HOW FUN!! im so grateful for those that follow the promptings they feel in regards to helping me..i REALLY wanted to still do something for their bdays..its not fair that this new situation should take away ALL thier childhood..i know thats something we have to work on...i feel HORRIBLE that they cant be kids anymore..when i hear people say "well they are just gonna have to learn how to grow up - or help out more" it makes me hurt inside..nobody should have to have their childhood taken away ..or extra heavy burdens placed upon them..and while yes i do understand "it will make them stronger"...its still TERRIBLY sad for me..
i was able to get out last nite with the girls..i think i just kept making everyone yawn the whole time!! but it was nice for 2 hours to get out for a bit..
well i now need to get jon out of his bed and into the wheelchair..im home alone so i may call for someone to come help me real quick..

this may help..

Injured man counts blessings
Friends and strangers aiding Hales



10:00 PM PDT on Sunday, May 14, 2006
By MARLENE TOSCANO
The Press-Enterprise



RIVERSIDE - Jon Hales said his and his family's lives changed forever on March 16.

He had been riding a motorcycle with friends in Moreno Valley when a wheel snagged on a rock. He was thrown over the handlebars and landed facedown, chin pinned to his neck.

Hales said his first thought was that his neck was broken.

He said his second thought was about Jesus Christ, and after that, he was at peace, he said.

The accident obliterated the C5 vertebrae, which controls most motor skills, said Sheldon McGee, one of the friends who was with Hales the day of the accident.

Though he had been told that the accident had paralyzed him from the neck down, Hales can shake a hand and move his shoulders.

He left Loma Linda Medical Center on Wednesday.

Students from a seminary class Hales taught at his Mormon church and McGee helped make Hales' home wheelchair-accessible, stripping carpet, ripping up tile and laying down hardwood flooring.

Support from friends, family and church members extends beyond the community of Orangecrest, where Hales, his wife, Christina, and their four girls, Rachel, 8, Sarah, 6, Anna, 3, and Rebecca, 18 months, live.

Through friends and family, word of Hales reached the likes of actor Henry Winkler and Pittsburgh Steelers football player Ben Roethlisberger, who each donated items for a fundraiser at Orange Terrace Community Park, event organizer Celesta McGee said.

With a smile, Hales recalled a woman whose car broke down in front of his home before the accident.

She saw a flier about the fundraiser and showed up, remembering the young man who had offered to help her. Almost 500 people attended.

"Sometimes, it's tough to think of this experience as a terrible thing ... because of the overwhelming love and support that has been shown to our family. In that regard, it's been a blessing in our lives," he said.

Reach Marlene Toscano at (951) 368-9660 or mtoscano@PE.com.

back and forth...

today i keep going back and forth from crying and being happy..im not sure what my deal is!! i saw a sticker on the back of a truck that had a dirt bike with the rider who looked like it was flipping over or about too..it started to tear me up..later as i was coming home from running to the postal annex i saw two men on street bikes..one was a bigger guy who reminded me of jons friend sheldon and the other was a smaller guy who reminded me of jon..i thought..man they look like it could be sheldon and jon cruising the summer streets...thats just something they would have done together on their honda shadows..i bought jon this REALLY nice one for his 30th bday..he lOVED It - as did i...one day he'll get back on..one day i WILL see sheldon and jon cruising the summer streets...

i dont know what my deal is..going out into the "real world" is a little wierd..i feel TOTALLY lost..maybe im not prepared for it..for 9 weeks the only time i left the house was to go see jon at the hospital..and come home..its very wierd to walk into a grocery store, target..anything..i dont know how to explain it..i feel like im just on the verge of crying for some reason..i turn and look at jon...who has lost more then 30 lbs in 9 weeks..who looks so weak...is always burning or feeling icy cold...i think about the man i married 10 years ago and how completely different they are..i fear jon losing the "jon" i fell in love with...anyway- i dont need to make anyone feel sad or sorry for myself..its just one of those days..

well girls are home! they'll probably want to hop in the pool!!

Girls are cured!!

Well i cant believe it but my girls were cured thru the night! must have been due to all of your prayers!!!! Sarah was excited to wake up and head to school. Becca woke up happy as ever and ready to start her day as well. Were so lucky because we feared jon getting sick!!
Jons doing well - he's sleeping well, his pain is at a 6.5 or a 7. All in all he's doing well. His mother is here now helping him stretch out his legs. He hasnt had anyone do anything like this since he left the rehab!
well i have a busy day - but im happy, healthy, and strong- i feel your prayers have helped me immmensley - i think taking a shower also helps with all of those things as well!!

Longggg day...

Today jon spent most of his day in the wheelchair again without his belt thing..thats so fantastic!! he worked at training sheldon and his brother scott on some aspects of the business..i think he enjoyed hanging out with them like the good ol' days..

sadly sarah and now becca are both sick..becca's fever was 100.7 and she fell asleep in my arms at 630pm..sarah is still sick..she has a pounding headache and slept a lot today..her fever was 102.7..we quickly gave them both motrim and sarah's fever dropped to 99.7..so thats good...she's pretty miserable..becca's happy as long as im holding her..so thats ANOTHER thing thats just been added to my plate..we'll see what happens in the morning if anyone else gets sick...jons REALLY nervous about getting sick too..hopefully its just a 12 hour thing or 24 hour thing and they are good in the morning..PLEASE PRAY that jon doesnt get sick..i dont think he has enough in him to keep him going...

Eunice is the new 24 hour caregiver now..holly trained her for the bowel program...and then katrina will be training her for the evening program thru the night..we have it set up now that jon will be in bed for the night by 10pm..then the caregiver will help jon at 12am and at 4am and at 8am..then he'll be bathed, dressed and fed for the day by 10am..and then hopefully ready to be up in his wheelchair by 10am or 11am...most days doing all that exhausts him! then the caregiver will go upstairs to rest for a few more hours and i will care for jon..then she'll be back down to help him..by 6pm we'll eat dinner..she'll help to guide him as he feeds himself..then he'll start the bowel program and get ready for the evening again..
Eunice will be able to be here till saturday night at 8pm..then i will need to contact someone (hopefully kim??-Kim call me!) and then katrina said she could come sunday night and then Eunice will be back monday nite at 8pm...SOOOOOO we'll see if this new set up will work for us...PLEASE pray that it does...PLEASEEEE pray that Eunice is capable and a fast learner and feels confident PLEASE PLEASE PLEASE!!!!

Well its now 11pm..i think its time for me to hit the sack...desert news called and they are also going to run a story on jon ..look for it next week sometime..i need to send them some photos- (nottinghams please email some shots of the fundraiser!-thanks!!)

YAAA got social security figured out..

Well someone from social security called me..they are still working on the application..THANK GOODNESS!! i was suppose to bring in all this stuff...but now they just need my drivers license, jons original birth certificate and his last SDI stub- SO NICE!!!
i guess we got denied from SSI because our SDI checks are more then 2k per month..jon made a good living which put a lot of money into his SDI account..so now that were utilizing that SDI account..he makes more then 2k per month..thus denied from SSI..
BUT social security is different..we still can get cash benefits now matter if he had a million in his account or how much he makes per month..so thats a bonus!! im SOOOOO grateful this is working out now!! i TRULY feel Heavenly Father helping me with this -- i have been SO STRESSED about getting it done!! Hopefully with that cash we'll be able to pay for a caregiver in the home vs using our fund money for it..the SDI is helping to pay for our living expenses..it doesnt cover everything..so were so very grateful for our parents that are helping us and for the fund monies that are there to help us get back on track..once jons business gets going - we will be able to live off that - which is NOW MORE THEN ever jons determination and goal and desire!!!
im on hold now for IHSS -which i believe they pay a family member to do all the caregiving and so we'd just pay the caregiver with that money- i have NO idea how much it will pay - but hey every little tiny bit helps at this point...
i feel like a HUGE rock has been lifted..i feel a little closer to calmness now!!

long night...

well i went to bed in good spirits last night..then at 1130 i looked at the wedding picture of me and jon dancing at our wedding..i TOTALLY lost it..and i cried hard..for a long time..i think it was my "mourning" stage last night..it was the hardest time ever for me..
then thru the night sarah came in not feeling well, pounding headache, diarhea, fever..so i was up with her instead of sleeping..
jon slept great i believe..we have a good system down finally..
i had the girl from kenya come today..she'll be back at 8am tonite..then she'll watch holly and then she'll watch katrina and she'll be here 24 hours until 8pm on saturday and be back at 8pm on monday...so i'll need to find someone for those other 2 days..so we'll see how she does..
right now sheldon and scott are here working on some business stuff..the PT guy came SO mad cuz he was just the evaluation guy - he didnt even do anything! RGHGH so i GUESS someone is coming tomorrow or the next day...what a pain!
well its now noon..time to go cath him, give meds and see if he's hungry for lunch..ive got a sick child who wont stay in her room or my room..so im a tad busy today!
tomorrow jon meets with pain management team not until 4pm..so we'll see how that goes..

jon makes it to the LDS.org website..

So jons newspaper article made it to the LDS.org website under news..pretty cool!
Jon had a good day today - THANKS robert for helping him!!! Scott will be here tomorrow..then sandra on friday..
i believe he got a good amount of work done..jon would read from one computer screen and robert had it hooked up that he would type from his screen so jon could see it on jons screen - if that made sense- anyway - if your techy - its way cool!!
teresa brought over dinner and her family came in and said hello to jon..we sat around the table and ate our dinner..again jon ate all his meal by himself..it was SOOO touchign to see sarah helping dad sip thru a straw his apple juice..i kept turning away cuz i just wanted to cry - it was just soo sweet!
then holly came..the evening nurse..and she gave him a pressure release while we all watched american idol show from last nite- it was SO nice to feel sort of normal!! then she helped im get ready for the night..SO nice that i can take a break and come on the computer and help to get girls into bed..im SOOOOO thankful for melanie and elizabeth to help me!!! they have NO IDEA how much they truly are helping me!!! soon we'll hopefully have someone that can do everything on their own without my help so i can focus on helping the girls get ready for bed...
i feel much more positive today..jon says he's in some pain..i hope its not growing..atleast we have a dr's appt with the pain management team on friday at 4pm..
so today i called the home health company in a controlled upset manner of which im pretty good at and so now they are coming tomorrow at 930-- i tell you you REALLY have to be on top of things or nobody would show up!! i knew from the get go i wasnt going to be happy with home health care..i want to get him over to outpatient rehab as soon as i can...jon hasnt used ANY of his muscles since he left last week - thats not good for the body! anyway- i had to "roll some heads" to get things going..i had to laugh because on the front of the home health care's folder it said something alone the lines of "if you're not getting quality home care- please call" so i did!!

its wierd for me to go do "normal things" like i went to ralphs to pick up a prescription that cost me 77 JUST for the copay on it..crazy..anyway..i was walking around kind of in a daze..i feel like that life is SOOOO far removed from me now..just to be in the car by myself is sooo far removed from me now...i cant EVEN imagine driving down to OC to visit with family ...something we did SOOOO very often..and now..its just different..anyway- its hard for me to explain how i feel..oh and no worries..im going to go see a counselor thru LDS social services..i dont want any of you to worry..im taking steps to work thru this..i definately go thru "i can work thru this" to "this is rough" to "im mad" to everything really..but what i DO know is that Satan knows how to work my heart, feelings and thoughts..having that kind of knowledge and knowing that the Savior and his Atonement can bring me peace and happiness..thats such TRUE knowledge to the VERY deepest core..im so grateful i was raised in the church and that it teaches how peace of heart and mind can come thru the Atonement..what a blessing..

im so very grateful for my family and friends that are helping us thru this..im so thankful for all my friends that always call me first before they head to the store..for the emails i receive..for the cards..donations to the fund..help with the girls every morning..doing laundry..bringing over supplies..everything..were so grateful..
jon is such a wonderful being..it hurts me inside that he is going thru this..i know week by week he's doing so much better then before..but on a daily basis and as the wife..you tend to see WAY more suffering then others see..and sometimes thats hard..

were REALLLLLY excited to get back to church on Sunday!! this is the LONGEST ive ever not gone to church - it will be wonderful to be back in the building we attend with all those wonderful people..i hope i dont just cry my head off though!?!?! yikes!! of course now we have a REAL reason to be sitting in the back row like we always use to..(we call it the "outer darkenss" row)..it will just be so great!

keep the prayers going -- jon can truly feel them..we all can..i REALLY now understand how this is such a day by day process..im really learning to love other people because of their service towards my family..in church when people would stand and say "i love all of you" i tend to dismiss it..but now that im going thru this and have witness the Lords hand in the lives that are changing and the lives that are blessing us right now..i can now TRULY say "i love all of you"..i can now understand how Heavenly Father loves ALLLLL of his children..each and everyone..its so amazing how when were involved in service and the Lords work..how all the negativity about someone and something diminishes so quickly and the good is so ripe and pure..i just love that..you can start to witness the spirit in peoples eyes as they come in and out of my home filled with a longing to help me and my family..how blessed i am to be ecompassed in that kind of precious great love..just wonderful!

back to the 24 hour care...

it looks like were going back to the 24 hour care...jon is able to have it worked out so that at midnite and 4am were only cathing and rotating him and giving meds..the rest of the time he'll stay in one spot and sleep - so now we ALL can sleep better!!
we have a 24 hour girl coming tomorrow at 11am for an interview..so we'll see how it goes..she is a CNA and actually a test away from being an LVN..she is from Kenya and she is 34 or 35 years old... so HOPEFULY she will work out and knows how to do everything..we really need to figure out something..then i can get free time to go to social security and hand in all this paperwork and get things moving on that to get help to pay for this person..because right now its out of pocket..
jon has just been asleep in bed all day..because i think he's not sleeping at night because he's being woken up so much..jon said today that katrina talks thru her WHOLE process..swearing and everything..its not fun..no wonder he's so tired all day! its now 130pm..he just ate carls via his dad..so now we'll get him up in his chair to "start working on his business"..
PLEASEEEEEEEEEEEe pray that this kenya girl works out..and that she is able to live here and help me with jon..that she'll know how to do it OR atleast i can train her and she picks up fast!! thats been our problem..NOBODY knows how to cath externally and when i show them..its still not good..only kim did good!! im so grateful we have kim when we need her!! but we needed someone more permanent right now..

exhausting morning..

Last nite i waited till midnite to help the caregiver katrina cath jon..we again went thru 3 kits..but the 3rd one we finally got it..and it looked really good and clear which is a good sign..
then i went to sleep and had the baby monitor on so i could listen for the 4am cath to make sure she got it and i could hear her and listend to see if she needed my help..it went well..so she didnt need me..so needless to say..im whiped out again..
jon was able to make it thru the night taking meds and cathing at 12am and 4am..so i will need to check and make sure he has no pressure sores..if he doesnt that will be great..cuz that means the mattress is working properly and i can go back to hiring someone full time so that someone is here during the day to help me vs just at night when they are only doing something twice and spending the rest of the time sleeping on my couch..i pay the same price either way...now its a matter of finding someone thats good at helping jon..
well i need to get myself dressed for the day..someone should be here shortly to pick up the younger two girls..well see how the rest of the day goes..

WHAT a night...

Well Holly was here to help me with jon..we got him onto the commode chair and he passed out hard-- it felt like FOREVER!!! he was out for a solid 2 minutes..i tried everything to wake up..we had him tilted back, feet up and everything..he finally came too..anyway - it was SOOOOO scary!!!!!!
Katrina is here now, i will stay up at midnite to walk her thru the cath process again..tonite i had to go thru 3 kits to make it work..which i NEVER have to do -but there is so much resistance right now..so hopefully at midnite its not as bad..
we have a system set up i think AGAIN..holly will come each night from 6-10pm and then katrina will come 10pm-10am..so we'll see how long this will last..right now the caregiver is waking up every 2 hours to care for jon..im going to try to change things around..he's been taking one med at 10pm, 12am, 2am ..etc..so im going to hold the 10pm (its the dilaudid-that were going to try to phase out eventually) med to the midnite med, and so it will be now at 12am, 4am and 8am when he's being cath'd anyway..then later we'll also try and see if he'll let us not move him till every 4 hours vs every 2 hours..this fancy mattress we have is SUPPOSE to make it so we dont have to turn him but every 6 hours..so we'll see if we can stretch it to 4 hours from the 2 hours..otherwise i feel like i'll NEVER be able to keep a caregiver here...
its also important for jon to get REM sleep..he keeps waking up so much thru the night, his body wont heal without the REM sleep..which is another reason why i prefer to have him only rotate every 4 hours vs 2 hours...
i hope he feels better tomorrow..he had a really good urine take and a really good bowel process tonite..so he should be feeling better tomorrow..he's been SOOO tired all day today..and in more pain..
please pray for him that he'll get "good sleep" good "solid sleep" that his body will reach the REM part of the sleeping process..it will help to heal his body further..pray for me that i'll get good sleep too..so im a happy person during the day...also pray that we find a caregiver that works well with our family and that will stay..
well im exhausted- im going to try to take a cat nap before im back up again at midnite..

tuesday evening..

Katrina left this am at 10am..then the bishop and r/s pres came over and we discussed the needs our family has..
Katie got here about 11am..jon and i left for his dr appt at 145pm..got home a little before 4pm...the nurse came in and was taking down info and asked "are you on any medications? jon said what aren't i taking!?! isnt it on the chart there or do you really need me to tell you all 20 of them??" anyway- things like that can get on your nerves REAL fast!!
we went over everything about jon..so now he knows..so he'll be able to keep a watch no jon..we'll meet with him again after we go to the other 3 doctors..they did an EKG on him just to make sure..because jon was having chest tightness..it came back great..so no worries there..he MAY now have another UTI..so we'll see how that goes..today he's been SOOOo tired and not up to eating much..he just had a great bowel movment so that is great! who knew we'd be so happy about things like that!??!
we have holly here right now till katrina gets here at 10pm..im training her on how we do things..then katrina will take over from there..
elizabeth and melanie have been GREAT to help me with the girls!!! they love having them here!!! i cant believe i was their laurels leader and now THEY are serving ME! who would have thought!!! im so lucky to be in such an AWESOME ward- we NEVER EVER want to leave!!
well back to business..

I think this might work...

Well katrina got here last nite around 1015pm..i stayed up to show her everything..i think she did great...ill have to check with the boss though "jon" to find out for sure..she will be able to come everyday at 830pm-10am..except for tuesdays..so hopefully maybe kim can come on tuesdays for us..
jon is REALLY tired today..he says he can hardly wait till he can sleep straight thru one night..poor guy..hasnt really slept solid for 8 weeks now..
the shower guy came and "hot mopped" it..it smells like tar..i guess it IS tar! so thats lovely to have in the house- luckily its upstairs so ive opened the windows and shut the bedroom door..
the bishop and r/s pres will be here in about an hour 11am..i need to go so i can get jon into his wheelchair for the day-he said he just wanted a 10 minute nap first..
hope the rest of the day goes well!!

Made it thru monday...

Well we seem to have made it thru another day...i felt like i was glued to a phone for most of the day organizing doctor visits..making sure EVERYONE was getting jons medical records so we dont show up and they say "well we dont have any of your medical records- you look fine" have a nice day type thing!!
the home health care social worker came in..she asked what we needed help in..so we did our best to explain to her what was happening..our main concern right now is a caregiver for jon..and we KNOW that social security will pay for it BUT because we had our huge tax return sitting in our bank account- they said we had too much money RGHGHHG --so much for trying to work hard and save our 10%!!! the social worker laughed and said its SOOO true- people who dont care about saving money or just spend money like its never going to end..then something like this happens..and then the government pays for everything..BUT for those who work hard and save their money instead of spend it out of control..they get the bad end of the deal...not really fair..but oh well..thats how it works i guess..
jon ran out of dilaudid so we had to get a new prescription from his primary care physician so i asked jon if he wanted a ride in the truck in his new seat? he said sure why not! sadly the seat doesnt lean back too much..so it took a bit to get use to it..it will get better with time..but we did make it to the clinic which was on Day street and back home..the seat is SOOO NICE!!!
then we got home and dinner was here waiting for us- thanks erin! love homemade bread!!! except for what it does to my waist line!??!?! it was the FIRST time in a LONGGG time i felt like a normal family..nobody was here but us..and jon ate 2 bowls of it ALL by himself!!! it was neat..then shortly thereafter elizabeth albrechtsen came over and helped to get the girls settled into bed..they were a bit rowdy tonite so i may have to work on that before she gets here next time!!
i have the new caregiver coming at 10pm..so in about an hour..hopefully she works well with us and then HOPEFULY and PLEASE PRAY that i can get thru the day with just me and jon and the girls..i hope i dont lose my mind trying to do pressure releases every 30 minutes while tending to the 4 girls..if it gets too much for me..ill have to just do something else..i SO dont want to burn myself out..so pray that it runs smoothly tomorrow for us..

Press Enterprise Newspaper Link on Jon Hales..

Here is the PE Newspaper link for Jon...

http://www.pe.com/localnews/riverside/stories/PE_News_Local_P_r2spot15.d813d77.html

so mom that means highlight the link hit ctrl c for copy and then click on a new browser window(the white part)and hit ctrl V for paste...

Monday morning..

Today is monday..jons mattress KEEP deflating on home- imagine not moving and then being sunken into a HUGE air mattress- talk about scary!!! so AGAIN ive put a call in to figure out what the deal is with this mattress...
jon also has a LOT of tightness in his chest and its making it hard for him to breathe right now..so i called the RN from our home healthcare (who wasnt there of course) and the office told me to call the doctor which i did that (who wasnt there either -out to lunch) so now we get to sit and wait and see what happens..
he's up in his wheelchair again without his abdominal binder which is good...
our r/s president came over and talked to us about the help the ward is going to be able to provide for us to help us out..which is SOOO wonderful!!! we have a great big ward with so many tender hearts- were so thankful!!! we also have awesome neighbors and friends all around us willing to do anything...
tonite at 10pm we will start with katrina..she is VERY excited to come help us..so we'll see how it goes..during the day from 10am-10pm..im on my own..we have kim able to come when she can..so we may call katrina to come in earlier then 10pm..when you do a 24 hour shift you pay for ONE person and thats 150 dollars a day..AND they HAVE to sleep for 6-8 hours straight..so if i did the 2 12 hour shifts..im paying 13 per hours..which is double then one person 24 hour shift..SO i really need to figure out something..now social security is suppose to be able to help pay for that BUT i got denied because we had more then 2k in our banking account in april..SO i have to do a bunch of stuff and paperwork to see if i can work that out...until then just more stress!!