ants

tonight is owen's 18th night at children's mercy. not sure how many it is for me but it really doesn't matter if part of your heart is here. during the week nick and i are doing every other night so noah and liv can sleep at home. on the weekends our family helps with liv and noah....so grateful for our family. natalie and my mom are still being a big help relieving me and nick at the hospital. jill has helped us a few times too!!! thanks everybody!!! as far as owen goes he is starting to show signs of getting better. his stool output is slowing down...yay!!! if it can get to 420 mls or under they will start to introduce food back to his body. it was 2000 mls when we brought him here and was hanging around 1000-1500 mls for awhile. but saturday it went down to 750 mls, sunday 620 mls and today i think it will be around 500 mls. so maybe one more day then they will start to feed him. he isn't talking about food as much as he was last week but hasn't stopped completely. he did start another weird thing....licking his hands. :-/ over the weekend he was really really crabby. i finally told him i was going to leave if he couldn't talk nicer to me. i get that he is mad and frustrated. i was trying to keep quite and just let him take his anger out on me but i can only take so much. he was a lot nicer when he realized he could be here alone. nothing a little threatening won't cure.....except for a stomach virus :-)

o-dawg being silly with jill

pall...owen has been loving the book. the airplane page is his favorite because he can pretend to eat the fish crackers


jill brought pirate patches.....arrrrgh!!!!

noah had to get in on the pirate action too!!!

noah being silly sitting in the window sill playing in the blinds. last wednesday night they had to move us to a new room because there were ants in our room. they were by the window and the bed that i sleep on. on the 5th floor, how does that happen?!?! but it was ok, we've enjoyed the change!!!

honey mustard

we are still chilling at Children's Mercy. on friday owen was taken back off clears. which means he can't have anything by mouth. :-( poor little guy hasn't actually had a bite to eat anything besides jello since friday the 12th at home before we brought him here. his condition with the stomach/intestinal infection hasn't improved at all at this point. dr said that the antibiotic could take up to 14days to start working and he is on day 7. sounds like we won't be out of here anytime soon. not eating is really starting to mess with his head. he talks about food/eating in some way non-stop. he has his first meal when we leave planned down to every last crumb.....where we are going to buy it on the way home and how fast i have to make it. he's had it planned since saturday :-( he's been imagining that his potty seat is made of marshmallows. over the weekend he had his finger in his mouth and i told him to get it out and he said "i could eat it, my teeth are strong enough".....i'm pretty sure he was serious!!!! right now as i'm typing this he is sitting on the potty quizzing me on all my favorites.....breakfast, drink, dip, pasta shape...etc. poor little guy, i hope he gets better soon. i try to tell him let's talk about something else but then he gets sad because he wants to go home. to make matters worse right now liv has been sick :-( today she stayed at nicks parents house today with nicks grandma and looks like that will be the plan tomorrow. last night my mom and natalie took turns staying the night with owen so nick and i could both stay home with liv and noah. tonite nick is at home and his mom will come over at 5am when nick leaves for work to take care or liv and noah. thanks everyone for all the help!!!

owen and noah playing toy story match game. it was so sweet!!! these two have a mutual dislike for each other but i know deep down they really do love each other.

noah planking at the hospital!!!!......you like that nat and jill?!?!?

getting ready to take noah to his first day of pre-school at CCVI. he had to go without owen. my mom sat with owen while i took him.

such a big boy!!! he is going to CCVI on monday and wednesday for pre-school as a peer model. livi did this a few years ago. it is a great program. noah's teacher was also owen's first teacher. :-) i love CCVI!!!

toady owen's favorite child life specialist came and played with him. she brought this green ball that they bounced all around the room. he giggled so much it was healing to my soul!!!! he even got out of bed and stretched his legs. he hasn't really walked on them since we've been here so it was good to see him on two feet.

ps...owen just asked me if it is good or disgusting to put honey mustard on a hot dog? :-(

one week down

we are still hanging out children's mercy. we've been here 7 days today. owen isn't getting much better at this point. they have him on an antibiotic but since he is immune suppressed for the new kidney it can be a slow process getting rid of the virus. the virus he got ate away a layer of stomach which is making it impossible for it to absorb or breakdown anything that goes in. so everything comes out as quick as it went in. due to his immune system again it will take a bit for his stomach to rebuild that layer. on a good note he doesn't appear to be in any pain and seems to feel really good. he has some swore spot from sitting on the potty to much. but is being such a brave tropper like always. a few days ago when a new set of doctor came in they look at owen sitting on his potty seat playing with my ipad and said "that's owen? from his chart we expected to see a boy that looked green and was sick in bed. he looks great compared to his chart!!" they still have him on just clears and iv fluid, no real food yet. he seems to be ok with that for now. he has his moments when he sees a food commercial on tv and gets sad that he can't eat. :-( he's lost some weight so they are working on trying to get some food in him. nick and i with the help of our awesome family are running around from here, work and home. we've been taking turns staying the night with owen so one of us can stay at home with the liv and noah. liv had to sleep in her own bed for the start of 2nd grade. it's taking a lot of juggling and not really getting to see each other or all three kids everyday but we are doing it.

my pretty 2nd grader!!!!
owen loving the new toy story kerplunk game ya ya brought him. she comes and sit with him everyday for a few hours so i can go to work. thanks mom!!!

owen loves playing with aunt nat nats ipad. she has been coming at 5:30am to stay with owen after nick leaves for work at 5am. she stays till i get there at 9am after i take noah to the sitters and liv to school. i cant bear the thought of owen being here by himself even if he's just sleeping. thanks natalie!!!

this is the little cutie face i put to bed tonight. gosh i love him!!!!

where do i begin

i will start with july 25th......we went to children's mercy for owens 20th surgery. we had to wait a long time past his scheduled surgery time due to them squeezing in an emergency surgery, which really wouldn't be a a problem except for you can't eat for like 6 hours before a surgery. nick and i have a rule that we don't eat while owen can't eat but it's over for us once he goes into surgery. (we are seriously starting to rethink this rule) so finally owen gets taken back. he was his big brave usual self and walk right back with the nurses. so typically we go get something to eat once we get the call that the surgery has started. but on this day the call was that the dr wanted to talk to us :-/ not good.....owen's heart started having SVT (rapid beating) when they were trying to put him under anesthesia so they had to cancel the surgery. :-( this has happened before with a previous surgery. the good thing is owen didn't remember anything or know that the surgery didn't happen until we told him when we finally got to see him in the recovery room. the bad thing is that now none of us have eaten for hours.

owen being owen waiting for his surgery thank goodness for my iPad :-)

so in results of the SVT his cardiologist had him wear a heart monitor for a couple days then put him back on a heart med that he has been on before. this should get him thru the surgery next time. we waiting to hear back on a reschedule date. the part that stinks now is that he will have a cast on for six weeks of school, it not completely awful just not ideal.

since we had the sudden change in our plan we decided to do something completely different and spontaneous for us. we drove to chicago for a weekend trip. it was fun and different. we ate chicago deep dish pizza and chicago hot dogs. we went to the navy pier, ikea and the american girl store. our hotel had a pool and that's all the kids really need for it to be a fun trip. we can say we did it, we drove to chicago with three small kids and survived....well almost. the night before driving home nick started to not feel so great. he slept the whole drive home the next day. he had some kind of stomach bug and a sinus infection. (which i had an awful sinus infection the week before that) and then tuesday owen started to not feel good, seemed like the same stomach bug as nick. by friday he wasn't getting better and i became very worried that he could be getting dehydrated so we decided to take him to CMH, the kidney dr wanted us to bring to the kidney center to see him. and we've been here ever since. tomorrow will be day5. he is having awful diarrhea that had gotten him severally dehydrated and it is washing out all his kidney rejecetion meds. friday, saturday and most of sunday they had him on complete stomach rest/nothing in the mouth.....nothing! (me and nick's rule doesn't apply in that situation, we just don't eat and drink in front of him :-) those two and 1/2 days were complete torture hearing him cry for a drink or food every five minutes, then he'd cry to go home to get a drink, then he figured out he got a little water when he brushed his teeth so he'd cry to brush his teeth. they are giving him plenty of fluids all the vitamins and supplements he needs but he can't understand that. so today he could have all clears (water,apple juice & jello) and it's still not going so well with his labs and stool output. another thing that is not going so well is Liv. she is having a really hard time with this hospital stay. it doesn't help that the first day of school is wednesday and it doesn't look like we will be at home for it. it is breaking my heart to see her so sad. she had a birthday slumber party saturday night that i had to leave the hospital to pick her up from at midnight because she was sick. i think it was just nerves and eating to much rich food. then the last two nights when i've had to leave her she has cried. i've cried too. i had to tell her that owen needs me more right now which really isn't fair.....she needs me too :-( this unexpected hospital stay has been emotionally draining on me, i'm just doing whatever i can to get thru.

his left arm is puffy from a IV line they had in not working right but he thinks he has a really big muscle and is enjoying showing it off to anyone that comes in

he hasn't been able to wipe this smile off his face since he was started on clears......i love it!!!!