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!!!!

summer lovin.....

june just flew by!! we were busy every weekend. owen is doing awesome. we have had some little minor things that have sent us to the emergency room lately and while one was with owen the other trip was for liv. she had fallen back wards into a sunken bath tub and cracked her head open. thankfully she didn't need stitches just a little love and she is all better now. :-) owen was there because he has had what i thought was a wart on his hand that had somehow gotten infected and had to be drained. today at the kidney center the nurse thought that it might still be infected so when we go back tomorrow the dr's are going to take another look at it....ugh! the next big thing going on with owen is July 25th. he will be having surgery #20. it will be on his right leg. they will be cutting his tendon in three placing to allow it to strecth out and not be so tight. he will be in a cast for 6weeks after that. :-( no more swimming the rest of the summer.....such a bummer. besides that the timing works out great for school. he knows he will be having another surgery again soon but doesn't know about the swimming thing yet. it's going to be a rough second half of summer. we are trying to pack in as much summer fun as possible right now.

crazy kids playing in the sprinkler!!! safety first with noah

june 15th my little man turned 6!!!! me, nat and pall took cupcakes to his school for a b-day party with his class. seeing him with his classmates just melts my heart

nick and i took the kids to Tasso's Greek Restaurant for owens b-day weekend celebration!!!


it was so much fun, if you haven't been there you really should try it!!!

and to finish the weekend we took the boys to see Cars 2. owen loved it!!!

the last weekend in june livi was in her 4th dance recital. she was in 3 different routines and did an amazing job. i couldn't have been more proud of her. i actually cried watching her from the audience.

her cousin lola was in the recital too and also did great. we are hoping they might have a class together next year.

the boys loved running through the smoke bombs on the 4th

getting ready to watch the big fireworks. we always have so much fun on the 4th going to the smith's and hanging out with our extended family :-) and friends

may jo and bill (the smith's) let us use there pool during summer which we are so grateful for. the kids love being able to go there to cool down at the end of a hot weekend. owen truly loves swimming!!!!

noah is so fun to watch swim. he has no fear!!!! he just jumps in, swims out and does it again. it is so funny. he won't let us help him.

at adaira's 8th b-day party at chuck-e-cheese. the kids had so much fun but that place is so over rated and over priced!!!!

california...knows how to party!!!

long time no post...uh? well a lot has been going on around here. owen had is 6 mo. kidney biopsy. he did absolutely fabulous...like always. they gave him some medicine to calm him down before and it was so funny. he's never had anything like that that i know of and it made him act like he was drunk....it was to cute :-) as cute as seeing your kid drunk can be ;-) i will say its much better then seeing them in pain.

this biopsy was considered a surgery which makes #19 for my little owen. you would think that he knows the drill by now and he does to an extent but he still hasn't learned he can't eat right away after it's over. it is so hard to hear our child cry to eat. while he was throwing a fit we got a true sign from my dad.....so owen was crying, crying, crying and nick and i are doing our best to ignore him because we couldn't reason with him and all of a sudden he stops crying and starts saying "i calmed down, im not crying anymore" over and over then says "im not myrtle-ing anymore" (those that knew my dad get that) nick and i stopped in our tracks and asked him to repeat it and he couldn't...kept saying he didnt know what he said. myrtle is a word my dad used daily...i haven't used it since he passed so i know owen doesnt know it. i cried and called my mom, she cried too

owens biopsy came back perfect. the doctor said that nick and i are doing a remarkable job with owen....there is absolutely no sign of rejection. yay!!! owen is also getting close to being on charts for height. he has always been this little dot under the chart. within the next few weeks the doctor is going to change a dose on a med that he said will help him grow even more. so much is looking great for owen's future. we had our meeting with the school district and we think we have decided to keep him at CCVI one more year. we still aren't completely happy with what the independence school district has to offer him. CCVI has great teachers and staff that we are already used to, we completely trust and they love my owen. right now they offer smaller class sizes and facility which are really important to me. i know it is the best choice for him right now.

the next big thing around here was owens "make a wish" trip to disneyland in california!!!

both my boys got haircuts before the california trip.

livi also got a makeover for california....she lost 2 teeth the night before we left :-)

we had the best time. i didn't want it to end. it was so fun to have so much friends and family take the trip with us, it made it that much more special. above is a pic of all of us at goofy's breakfast....nat and dom aren't pictured. nat got a cool new camera before we left so the pics with her were on her camera :-) we were there for six nights. make a wish had a limo take us to the airport. owen and liv thought is was the coolest. i have to say it diffidently is the way to start a vacation. traveling thru the airport with the way security is these days is so stressful with little kids. on the way home they pulled nick to the side with owens meds and said that one of them tested positive for an explosive.....really???? it was his bactrim, an antibiotic. we had two day passes to disneyland and california adventure plus we got this special pass that got us to the front of the line on EVERY ride. it was amazing!!!!! we've been to disneyworld in florida twice with the kids and been ask which one do we like better? it a toss up....i say do both if you can :-) they are so different but still the same.

they all three passed out as soon as we got back to the hotel every night. owen kept saying the whole trip "this is my wish come true" or "i wished for this". in california there were no trips to the hospital, no worrying about kidney function (kinda...you know my brain will always have its thoughts) but you see where i'm going with this....it was just complete family bliss!!!! we will be forever grateful to "make a wish" <3 they truly made owens wishes come true!!!! nick also got to do something really cool, along with dom and nathan, they went deep sea fishing!! nick caught a barracuda!!!

owen got to ride his first roller coaster here. actually he rode 3!!! last time at disney he wasn't tall enough. this time there were only a few rides that he couldn't ride. he got so excited when he was tall enough to ride rides and was the first to get on and the first to get off when they were a little scary. :-) he was such a big brave boy!!!!

owen did get so tired walking. nick and i have notice that his right leg that has always dragged some has been dragging a lot more lately. we have a call in to his orthopedic doctor to see if they are ready to move forward with treatment on it.

we took the kids to the beach and to legoland which were all so much fun but nothing beats getting to see mickey mouse!!!! BeSt TrIp EvEr!!!!!!

6 months

my boys six months after the swap

six months ago i was living at children's mercy hospital being amazed by my little man, worried about nicks growing allergic reaction and grateful to take daily showers. today i'm still grateful to take daily showers even if they are at 5:30am. i'm also still amazed by little man. and nicks allergic reaction has been long gone. :-) it is really crazy to think that owen is upstairs sleeping in his bed with nicks kidney inside of him. nick doesn't like it to be called his kidney anymore, he says "i gave it to owen, it's not mine anymore" but owen calls it his daddy's kidney :-) it will always be nick's kidney to me too :-) it's truly amazing what doctors can do and i thank my lucky stars for them everyday. over the past week i've gone back and re-read my post from the weeks around the swap. those thoughts feel like they were from a life time ago. and lately it feels like those thoughts are hard to come by. today i was talking to my mom about how i find it harder to blog now. i said before i was always up late, couldn't sleep and that was when i would blog. now i don't stay up so late....hence why i don't blog so much. my mom made a comment that has had me thinking all day "before you couldn't sleep because you had so many worries about owen." it's probably true but it doesn't feel possible that i could have less worries about owen now. i wouldn't say i have more but maybe just different ones. a parent always worries about their kids, right? i just need to make sure i'm not letting my guard down with owen....that worries me :-/ may 13th owen has a 6 month biopsy on the kidney. they will do it in surgery under anesthesia because of his heart history. we will stay one night to watch for bleeding.....one night will be a breeze for us. on may 20th we have round 2 with the independence school district to see what their plans are for him next year. i'm actually looking more forward to hospital stay then i am the school meeting :-/ i'll let you know how they both go.

owen loved dyeing Easter eggs
nick and noah making "the Face"

she was so proud of the eggs

the Easter bunny brought them luggage instead of baskets for our upcoming trip to California. owen's Make A Wish is in 20 Days.....we can hardly wait!!!!!