tuesday nite

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

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

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

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

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

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

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

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

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