i dont even know where to begin.....it's been a few months since my last post. i defiantly have a lot to get off my chest. Our lives have been pretty crazy around here and it is about to get even crazier. October 25th was the one year anniversary of "the swap". owen's days right now resemble those of the time right after the swap. especially being that he still hasn't been able to go back to school yet for this year. :-( he has still been testing positive for the infection that he got back in AUGUST!!!! he has tested negative for the past two weeks and if this weeks results come back negative he should get to go back to school after the holiday break. just so everyone is clear on this, owen hasn't been to school at all the school year :-( he hangs out/goes everywhere with me all week. i've loved getting to spend some much time with this little man but im ready to get some time away. don't get me wrong, i love the boy, but i think that we are both getting a little bit tired of each other. owen has hit some normal kid milestone lately that quickly remind me that he really is just a normal kid and not just some science experiment. He lost his first tooth a few months ago and another one last night. my first thought when he's shouting to me in the car that his tooth came out was....oh my gosh, what do we do? do we call his dr?!!!!!...i know goofy thought, huh?? thru all this crazy infection owen's kidney is still doing great. which is really good because they have had to lower his immune suppression meds in order to allow his body to get rid of this infection. right before thanksgiving owen had his one year biopsy on his kidney and the results showed that everything is working perfectly. once again owens dr said that nick and i are doing a remarkable job. if this test comes back negative we will also be able to reschedule the surgery on owen's leg. but all of this isn't the big crazy weight on my chest i've being needing to tell everyone about. here is were things get crazy.....nick has been giving an amazing opportunity with quik trip. in order to take this amazing opportunity we have to move to greenville, south carolina. it's too good for nick to pass up so his first day in the new divsion is feb. 13th. we will be making the trip to our new home around the first of February. we are so excited about what lies ahead of us in the quest to give the best lives possible to our kids. owen has fought for every day that he gets to live and nick and i have to do every thing in our power to make it the best life possible. we see this move as a step in that direction. with that being said we are super sad to be leaving our family and friends. i truly believe that our loving family and friends play a huge part in giving our kids the best life. so despite the distance im going to do everything in my power to keep all of you in our lives. :-( i sure am going to miss everyone.
Tuesday, December 13, 2011
Wednesday, September 21, 2011
N+A=10years
nick and i starting dating june 28, 1994. we were sophomores in high school. we've been a couple for over 17 years, more than 1/2 our lifes. natalie likes to say "we've been together longer than we've been apart"....which is true. tomorrow is September 22, our 10 year wedding anniversary!!! while we knew this anniversary was coming up, it defiantly got away from us with our busy, crazy life going on. it was this morning in the car that i realized it was tomorrow.....holy cow!!!! how did that happen??? so i wanted to take this time to brag about my wonderful husband, nick hughes. i don't know where i'd be without him. he is the best. he tells me often that "he's happy as long as i'm happy". often enough that i know he really means it. tues-thurs nights he's at home with the kids while i'm at work, getting them home from school, making dinner, doing homework, giving bathes and all owens medical stuff all by himself. next month is his 15 year anniversary with QuikTrip. QT is the best company, they have supported him not only professionally but personally and even more so since the day owen was born. he tries his hardest to do home improvements. he's not the greatest or quickest at it. we almost have a fence up after it first being started over a year ago(not that our last year hasn't been busy). but he tries. :-) he's not afraid to admit to me why it's been so hard to finish the fence. he's sad my dad isn't here to help him and tell him how proud he is of him. he also cried at my dads death and helped carrying him to his final resting place. right after learning of his death, with no question asked he went to get my little sister having to break the news to her and hold her has she almost fainted and cried. he brings up every now again the thought of us having another baby. he gets baby fever more than i do. he watches "good luck charlie" with livi and enjoys it. he also watches toy story 3 at least once a day with noah. he helps me shop for my clothes. he's a loyal chiefs and royals fan. he does must of the laundry around our house. he tries to make time for me to scrapbook. he sometimes changes the scentsy warmers at our house. he would love to have a truck but settles for his car because smaller payment and better gas mileage. he doesn't always remember my b-day but he's getting better. it's not that he doesn't remember it he just doesn't remember to tell me happy b-day the first time he talks to me that day. :-) he drinks soy milk because our kids do. he let a dr he'd only met once cut him open and remove a piece of him to better our sons life. he doesn't like it to be called his kidney. shortly after the swap he told me "i'd give owen my other kidney or my heart if needed it" and i believe him because that's the reality of our life. every parent would do anything for their kids, nick brings that to another level. he's so much more then all that, he's my best friend!!! i don't know where i'd be without him and i don't want to know. i love him more then anything!!!! he is amazing.
Friday, September 16, 2011
back home x2
so it goes a little something like this......owen was discharged from children's mercy on monday sept. 12th after being there for a whole month. tuesday we tried to get back to our normal life. owen went to work with me because he can't start school for at least two more weeks. wednesday we had to have owen in the kidney center from 8:30qm-1:30pm to have some blood test done. then on thursday we were trying again to have a normal life with owen at work with me. owen is still on a very bland diet. he is being such trooper about it, making it very easy for me to strictly stick to it. so right around lunch time on thursday he started crying, gaging, tossing and kicking saying that his belly hurt. he couldn't sit still and was sweating like crazy. after a few minutes of trying to comfort him and i decided to take him to the ER at children's mercy. his pain continued on there for 15-20 minutes. then when they were coming back in to give him a pain med he calms down and says "it's gone, im better now". blood test, urine test and x-rays didn't show any thing wrong that would be causing that kind of pain. while in pain he was screaming "somethings happening to me, it's getting bigger". the dr's think he was having a stomach spasm. being that his stomach is broken down so much by the infection they weren't surprised. since the pain stopped nick and i were hoping that we would just get to go home. owens dr's in the kidney center wanted to keep owen there over night just in case it happened again. so owen and i stayed there last night. then on friday (today) owen was discharged from children's mercy again. the pain never happened again....yay!!! so not really a good trying to get back to our normal life week. i'm beginning to feel like it will never be normal again or maybe i should just expect this to be our new normal. owen is being great with the new diet. which has brought on a new guilt in me, i feel guilty for being able to eat whatever i want. going 21 days without food has diffidently made him able to appreciate any food....even if it is bland. tonite at dinner i just about cried. the only thing on his small menu that sounded good to him was toast with butter. the rest of us were eating lasagna made for us by a great friend. a few minutes into the meal owen says "well, is it good?" my eyes teared up and it was good. how could i tell him that but i can't lie to him. so i said "it's pretty good buddy, im so sorry you can't have any" and he says "it's ok, i'll get to eat that when i'm not sick anymore" :-( he is just so amazing!!!! so tonite we are all sleeping at home again. i get to kiss all my babes good night and that's almost all it takes to keep me happy these days....
cute thing owen said this week....owen:i want to be a chef when i grow up....me:that sounds good.....owen:what are you going to be when you grow up?....me:i don't know but i'll let you know when i figure it out :-)
Sunday, September 11, 2011
just owen
i keeping getting asked "how do you do it" and i never know how to answer it because you just do it. tonite after being asked that question by his nurse it had me thinking "how do you NOT do it" really....how could i not do it???? how would owen survive if i just said "im not doing it this time" and just stayed at home carrying on like nothing was wrong. it's because of owen that i do whatever needs to be done to keep him here. any parent, grandparent, aunt, etc would do the same for the kids that they love. with that being said i defiantly dont do it alone....i have the best husband, family and friends a girl could ask for. without them i couldnt do it!!! it would be so easy to just give up, and there are moments that make me want to, like...wednesday night i was taking liv back to the house after dance class and went in to say bye to nick and noah before going back to stay the night with owen. and i said "okay i gotta go" noah said "no momma go bye-bye" i said "sorry buddy i gotta go" he says again "no momma go bye-bye" so i said "i gotta go back to owen at the hospital" and noah goes "oh owen dr. okay bye-bye" and planted a big kiss on me :-) at that moment i also realized how great liv and noah are and how much even a 2 year old can pick up on the dynamic of our special family. i totally wouldnt be able to do it if liv and noah weren't so great, sweet, understanding and forgiving. thanks everyone for all help, i couldnt do it without you!!! as of tomorrow sept 12th, owen will have been here for one month. the word in halls at children's mercy is that he gets to go home tomorrow!!!! i've got my fingers crossed that it will happen. our lifes wont just go back to normal once we get home. im not sure when he will get to start school. his stomach and intestines still havent healed themselves from the infection so his is on a very, very, very bland diet. no sugar, no lactose and no pepper or spices. they also have him drinking pediasure to keep up on calories. i hope to find out tomorrow how long we have to wait to reschedule the surgery on his leg.....you know, because i want to spend more time in this hospital :-/
they unhooked owen from all the iv's and tubes yesterday. and when they did he said all excited "mom they took off all my tubes" then i said "yay, youre just plain old owen now" so today as he was freely able to move all around the room he kept saying things like "look mom i can lay in your bed because im just owen now" :-)
Sunday, September 4, 2011
real food!!!!
we've spent labor day weekend hanging out with owen at the hospital. friday night nick parents hung out with owen for a little bit while nick and i took liv and noah to santa-cali-gon. it was fun hanging with those two but hard to not have owen with us. liv and noah went to the lake with nick's family for these last two nights. livi is still having a hard time missing us, but i know she is having fun. we miss them both so much, its all we've talked about this weekend. last night my mom sat with owen for a bit while nick and i went and did some x-mas shopping. :-) the best thing that has happened this weekend is that today owen got to EAT REAL FOOD!!!!!! this morning the dr.s came in and said that his stool was still down low enough that they were going to let him try solid foods!!!!! it's been 21 days. he was beyond excited!!!!!! it give me and nick hope that we might be able to go home this upcoming week. don't hold me to that....i said hope :-)
he is on a soft and bland diet. there is still plenty for him to choose from. for his 1st meal in 21 days he picked a pancake with butter, no syrup, scrambled egg and apple juice. and he loved it!!!!
i know that someday this will all be behind us and we will look back and say what were we complaining about. right now i can't wait for that someday to be here. can't wait to cook dinner and sleep at home with all 3 of my kids and nick there. can't wait to take this orange hospital bracelet off my wrist. can't wait to see owen with pants on. tonite when i was tucking owen in his hospital bed he said "mommy i miss my bed at home, when do i get to sleep there again?" :-(
Monday, August 29, 2011
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 :-)
Monday, August 22, 2011
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!!!
ps...owen just asked me if it is good or disgusting to put honey mustard on a hot dog? :-(
Thursday, August 18, 2011
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.
Monday, August 15, 2011
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.
Monday, July 11, 2011
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.
Saturday, June 4, 2011
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.
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!!!!
Friday, April 29, 2011
6 months
my boys six months after the swap
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