saturday..

sorry i havent written in here in a bit..its been another one of those busy days...
jon slept well thru the nite, i got up and got all the girls dressed up in their princess outfits for anna's princess party..which turned out REALLY cute!! i had to send the girls off without me because i was still here doing transfers with jon for his bowel program..but then i left after that..

we came back from the party and sheldon was here hanging with jon..then i got him into his wheelchair but he kept feeling like he was going to pass out..and he was SOOO white! sheldon and i propped him up against the couch in a pressure release position..he ended up sleeping like that for over an hour..

we TRIED so hard to get him to where he could go over to the campbells..but he just couldnt do it..so he asked to be put back in bed..then i set up the laptop so he could watch lord of the rings..

celesta and kristen picked me up and we went the the campbells open house and then hit the movies..im home now and jon is ALMOST done with his movie..the girls are sound asleep..

jon said the girls REALLY missed me tonite..and he really missed me tonite too..i have to say its SOOOO hard to do anything knowing how people feel when im gone..he was holding my hand and said its SOOOOO sad that im holding your hand and cant feel you...i cant even feel the warmth of your hand..all i can feel is a little on my thumb and my index finger..but not much..everything else is just pressure..its just so sad that i cant even feel your warmth..i miss that..
anyway - i tried to just hold myself together...we just sat there quietly...its things like that that make it rough... i REALLLLLY miss my old life...really miss it..i miss being normal..the way things use to be...getting a sitter and going to macaroni grill...sorry-- im just having a moment here...

for the most part jon had a nice day...he's having bowel problems so were PRAYING that it gets cleared up tomorrow in the morning..when he uses this ducolax..it makes him weak, tired and lightheaded..so were working other natural things to use..we have to say though since being off effexor - he's 100 times better!!!! we're seriously looking into the baclofen/morphine pump..this is something that would be inserted into his body..and MICROgrams of medication is pumped into him..this way he wouldnt be taking 30 pills a day and it would REALLY help him in his bowel situation..we have the pain management appt on tuesday= so we'll see what we decide to do...

i dont imagine we'll make it to church..because of jons situation..so the McGee's will be here to pick up the girls for us again..

right now..he's tolerating the pain REALLY well...it seems like his bowels are the thing thats giving him his issues right now..he's ONLY in bad pain when he has these issues..and so taking stuff also makes it worse..we need to pray together for us to be enlightened with something that will work with his body..that one of us will be guided towards the right thing..we cant keep him on laxatives and everything that he's taking..these can only make things worse down the line..so please pray that we find something..otherwise..everything has REALLY improved well!! he hasnt had any UTI's since he's been home - a HUGE BLESSING! he continues to go in his wheelchair without the abdomen belt - HUGE BLESSING! he's eating a lot more- HUGE BLESSING! he's been able to get work done- HUGE BLESSING!- so we do have TONS to be thankful for-- we just need this one thing to work out to see further improvement..which will happen i just know...

if someone is able to get in contact with the Rushton Family..Jon is anxious to hear about all the new cool technological stuff for the computer..he REALLY wants to start interfacing with his computer..thats who jon is-- all about the computer..he's ready to do that now..

well i hope tomorrow works out for him..i will continue to keep you posted..

i also need someone who can help me with the girls on the 16th of june when Mark and Jennifer get married..i will need someone to help me with the girls keeping them outside during the sealing..i imagine we'll just have the nurse there with us during the day..which brings up another point..

im kind of frustrated because i have one girl who comes tuesdays at 8pm- saturdays at 8pm which i pay 165 per day..then someone from saturday 8pm - tuesday 8pm that i pay 200 per day..here's my frustration..right now jon is ready for bed by 10pm COMPLETELY ready to go..then at 1am he is cath'd, meds and rotate which takes about 20 minutes if your good and 30 minutes if your a bit slow..he does this again at 4am and again at 7am and then he's up at 9am he's having breakfast...THEN jon starts his bowel program of which im still here because only i can do the transfers due to the caretakers limited physical abilities..then by 11am..the caregiver is done with jon..so they go upstairs to sleep until about 5 or 6pm..then they feed jon dinner and prepare him for the nite..during the 11-5 or 6pm time im doing everything for him...
i feel like they do a LOT of sleeping!! i feel like i'd rather get up at 1am and the caregiver get up at 4am and then im up again at 7am (since i go running at 730am -it would be good) then i have the caretaker up during the day since thats when its MOST crazy when i have all 4 girls home AND i have the FULL responsibility of jon!
SO its really hard to feel like im doing SO MUCH all the while paying one person 165 and another 200 and they get to sleep alot!!!! ( i pay one girl 200 because she says she has experience with kids -so since she has that she deserves more pay cuz she's "helping with my girls" which she has yet to do)...anyway - now im rambling..but this is REALLY frustrating for me because A) i feel like im paying too much for them B)i feel like they get to sleep more then i do C)they dont help with any of my kids D) i have to tell my kids to "be quiet" all day because the "nurse is asleep" E)im doing all the transfers so i cant ever leave F)im his full time nurse during the day so again i cant leave -- anyway get my picture!!! so i dont know...maybe i just need to try that out...both jon and i feel like were paying WAY too much money for it to not be working out better for us..
i feel like i cant do ANYTHING with my girls..because during the day im "helping jon" all the time..my girls miss their mom...they are carted off every morning to someone else's house...then during the day im always saying "i cant because of daddy" or "be quiet the nurse is sleeping"..i cant put them to bed "because im helping daddy" anyway - now im just rambling again..but these are my thoughts right now...

well i guess i will end my rant! jon wants me to just sit next to him and fiddle on the computer...so thats what i'll do then i'll go to bed..its getting late now..

thank you SO MUCH for your prayers on our behalf..we will TOGETHER get thru this..not just me and jon but ALL OF US will get thru this..i know it will be because of the united faith of all of us that he will walk..it doesnt get ANY simpler then that..its just the way it is..and i believe..competley..so thank you for giving us your faith in this journey..