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..