Here with me

This is what Owen looked like the first time we saw him after his open heart surgery.  He was just a little bit less then two months old.  Lived his little life in the NICU and only been in his mommas arms four times.  This image has been burned in my mind ever since. This is the moment when "keeping him here" became incredibly real for me.  If he can survive this, nothing else matters as long as he is here, here with me.  If he learns to walk and talk, that's awesome.  If he gets to go to school to learn to read and do math, great.  None of that matters if he's not here.   So while my mom promised him a trip to Disney world. I promised him I'd keep him here, here with me.  

25%

They say the loss of a child is the worst loss someone can go thru.  Just the thought of losing a child can be paralyzing or make you do crazy things.  2 mos after Owen was born Nick and I were forced to go beyond it being "just the thought" by doctors during long board room type meeting where they threw all kinds of what-ifs, percentages, side affects, future surgeries and so on at us.  After they were done talking this female dr turns to nick and I to say "Let us know if you need more time to make your decision because there is also the loving choice of just letting him pass".   They had just told us his next step was open heart surgery with a 25% survival rate.  If he survived he would need multiple more surgeries including a kidney transplant by age 5.  At this point we were also told that Owen was completely blind.  We could tell he sensed light but that was it.  The answer was a no brainier.  25% is better than 0%.  Do everything humanly possible to keep him Here.....Here with us.  You all know the rest.  But I have never been able to forget the feeling of a dr saying to me "the loving choice of just letting him pass" 

Getting to hold Owen one last time before heart surgery 

The struggle is real

Im going to give this another go.  It's been almost 2 years since I've posted.  There have been lots of good things to write about, I really mean lots....birthdays, teeth lost, kc trips, beach trips, school awards, weddings, holidays, baseball games, new nephews and a 4th child!! I just couldn't bring myself to post about all these goods things knowing that I wasn't ready to post about how I was really feeling about struggling with Owens happiness.  I named this blog years ago "living for Owen" and here I found myself not sure what that meant or how to do it.  We had brought another perfectly healthy child into this world that I am to love, protect and make happy.  All while I'm struggling with my imperfectly healthy child already in this world that I love, protect but do not feel I make him happy.  Something changed in Owen after we moved to South Carolina.   

Turning 5 blues

Uh oh!!! I have a 4 almost 5 years that I think is panicking about getting older.  Noah will be 5 on Feb. 4th.  Week before last he told me he wanted to stay little forever.  He thought it would be a great idea if he stopped eating so he wouldn't grow anymore, I begged to differ.  Then last week he said he didn't want to turn 5 and start losing his teeth like Owen and Livi did.  Again he had a good idea.  He thought he should stop brushing his teeth so they won't fall out.  Again I begged to differ.  Both of these came at random times and not when I was having him brush his teeth or eat a meal.  They are true concerns for him.  Well tonite Nick and I spent a good 30 minute consoling this seriously crying almost 5 year old.  He was so upset over the thought of Nick and I plus himself getting old and being in a graveyard. He kept asking who was going to take care of him when we were gone.  He doesn't want us to get old.  We didn't want to lie to him and say we are never getting old, so I said you don't have to worry about this for a very long time.  He seemed ok with the answer and went to watch tv.  Then I hear him sobbing again.  I ask him what's wrong now, he says after a really long time and you get old and go to a graveyard who's going to take care of us.  It was so heart breaking :-(. I'm really hoping this passes soon and has nothing to do with the fact that he is going to be a big brother to a baby BOY!!!!!

High and low

This jersey was given to Owen by one of Hair Spray Cafes great clients.  It's was too small for her grandson and has been too big for Owen until now.  The weekend before last we went to QTs annual family picnic and I thought it would be a great time for Owen to wear it.  Owen has never really cared too much about the clothes I pick out for him.  I usually pick clothes that will make him smile like a super Mario shirt or anytthing in green his favorite color.  Of course I'm always looking for my favorite when shopping for the boys.....skulls!  Before moving here his aunt nat-nat was reasonable for at least half of his woredrobe.  Once when Owen was at about 3-4 he told me he didn't want to wear a new shirt I got him that was black with purple pin stripes because it was a girls shirt. So I made a mental note not to buy him purple anymore.  I still pick out his clothes everyday for him in the morning.  When he saw the jersey he got really excited and kept saying "I get to wear a real jersey?".  It was so cute.  The picnic was on a Saturday and that Sunday Owen asked me if the jersey was clean so he could wear it school on Monday.  I can't think of a time that he has ever asked if he could wear something.  I love that he is showing that he cares how he looks.  I'm making sure that jersey is always clean.  

Tonite Noah took a face dive into the window sill somehow trying to look out of it.  Busted his lips, his gums and loosened a tooth.  He wanted me to take a pic of it so he could see it.  Livi had her friend from across the street over for dinner.  We did our usual around the table with our high and low of the day.  Then liv and her friends were asking each other silly questions....claire asked: would you rather have there be no money and everything was always free or be the richest person in the world? Then liv asked: would you rather be beautiful and poor or ugly and rich?  I won't go into their answers because they were stupid questions to begin with.  Its what Noah said that makes me love my family to pieces.  Noah says without even being asked just listening to the two girls talk "when I grow up I want to be a doctor so I can help Owen's body". This sweetness came from the boy with a swollen lips and gums.  Owens response was "my body doesn't need help!"  They are both perfect to me!

 The picture I took of them this morning before I woke them up for school.

Scarlett!!!!

Another post as promised :-) explaining why I wasn't completely home alone.  Back in November, right at Thanksgiving, we lost our chihuahua of 14 years Beau.  He was our first baby and was spoiled rotten by Nick and I.  We had other dogs that came into our family along the way but Beau was the only one that stuck around after we started having "real babies".  Nick and I were devastated by his lose.  I can still see his little head poking around the corner to check out what we are up to. He was such a good dog and we've found replacing him to be very difficult.  Right after our Disney trip in December Nick and I decided to get a chihuahua mix puppy to surprise the kids.  We quickly learned that a puppy was not the right choice for us.  The kids didn't like a puppy jumping on them nor did they seem to understand or care for the importance of training.  It made for a lot of work for Nick and I.  It had been quite a few years since we had a puppy and we began to feel like....what where we thinking getting a puppy.  After a lot of time and effort put into trying to make it work, we made the heavy hearted choice to find a new home for him.  And we did, he went to a single mom of an 8 year old boy that needed a play mate.  We were still feeling like we needed a family dog but didn't want to make another quick choice.  On our trip back to kc in July we all fell in love with nat and dom's big dog.  We began to think maybe a full grown big dog might be a good fit for us.  Nick started stalking recuse sites, Craig's list and the humane society looking for the right dog.  And we found her!!!

Scarlett!!! She is a six year old great pryenesse/lab mix.  We got her from the humane society.  She is perfect!! 

She sleeps with her tongue out!! The kids love her and she loves the kids back.

You'd think she's always been ours.  Nick leaves for work around 3:45-4:30am and she comes in every morning to tell me he has left.  Took a bit for me to figure out what she was doing but Now I find it very sweet and protective of her none the less.  

A lot to write home about!!

There are a lot of changes going on around here.  Like I always say with hair color....Fall is a great time for change.  Just so this all makes sense, I'm gonna back track a little bit.  In January I turned our basement into a daycare. 

I have a parent's day out/play group program.  They come over every Tuesday and Thursday from 10am-2pm. There were 7 kids age 3-5 in my group including Noah.  We have themed weeks with book reading, arts and crafts, exercise, etc.  I started this group so Noah could play with kids his own age while learning.  His dr had told me she thought he was a little bit behind and when he kept calling brown "chocolate" I thought it was time to do something.   It's been a lot of fun.  I've loved getting to see Noah and the kids learn things that I taught them.  Even Livi has benefited from it. I pay her to help me clean up and re-organize the toys each week.  That's a win win for both of us.  So with that going on January to June just flew by.  

Out here in SC they have 4K (4-Kindergarten).  Normal kindergarten like in KC is called 5K.  4K is not required and spots are limited.  By what I've gathered, getting in is based upon the child's needs and income.  When I first applied for Noah to go to 4K he was denied enrollment.  I was happy with that and glad to get to spend another year at home with him.  At the same time his dr had sent a request for him to have an evaluation done for speech therapy.  I've known since he started talking that he would need speech therapy but was told back in KC that he would get it once he started kindergarten.   **I have to say I love the way he talks!  Nick and I can't always understand what he is trying to say but Owen can.  Owen is our Noah interpreter! I'm very guilty of talking back to Noah the way he talks, which I know is no help to him.  It's just so tute (cute by Noah) I tan't (can't by Noah) help it :-)**. Right before school was out in the spring and Noah's evaluation with complete, we got a phone call saying Noah did have a spot in 4K.  I know that I willingly applied and could turn down the enrollment offer but couldn't bring myself to do that knowing that its what is best for him to get the help he needs with his speech.  I've seen, just with the small group of kids in my play group, how they can't understand him and/or try to correct him "winkle winkle little tar" just doesn't sound right.  I've been in denial that this is really happening all summer.  Last Wednesday I got a real rude awakening when all three of my kids went school on the first day.  I'm still in shock!!!

I've cried, Noah has cried and even Owen has cried.  He had been saying he was scared to go to 2nd grade.  When we went for meet the teacher night he was so nervous to go in the classroom he was shaking.  When his teacher came over to meet him he had the saddest, most scared look on his face with tears in his eyes.  I started crying :-(  He quickly had a smile on his face when his teacher said "look your friend Mackenzie is going to be sitting here next to you".  She is a girl with special needs also that was in his class last year.  They share the same special class aide.  A few minutes later he was in hallway helping Mackenzie in the class because she was too scared to come in.  Made me cry again.  I've gotten good vibes from his new teacher so far, it's only been three days.  I still question if he is in the right place and expressed my concerns at the end of the school year last year at his I.E.P. meeting and was told adjustments would be made this year.  I guess only time will tell.  I'm sure I will be questioning this his entire life.  CCVI and Children's Mercy set the bar high, Kc is so lucky to have them!!  Livi couldn't wait for school to start.  She is in 4th grade and in chorus this year.  I can't believe how grown and mature she is.  This girl is obsessed with chapstick (eos to be exact) and bath and body works products.......does that remind you all of anyone?!?! ;-)

Last Thursday something happened for the first time since moving here in Feb. 2012, I was in this house alone.  Well not completely alone (more on that in the next post. Yes, I know shocking!..there will be more posts to follow) but in this house without nick or the kids.  It was short lived.  At 10am my play group started.  I've decided for now to continue doing the play group even thou Noah isn't here.  I only have three kids left in the group for now.  The others started kindergarten too.  

Noah had 1/2 days last week so he got to play with his friends again.  It didn't take much to decide what I would do with the rest of my free time, I'm not one to sit at home.  I knew I wanted to work more at a salon.  I just wasn't crazy about the salon I was at.  I've had my eye on this salon that puts off the same vibe as Hair Spray Cafe for quite awhile.  I saw this opening in my time as an opportunity to make it work.  I'm so happy to announce that I'm now a stylist at Shear Faith Style Studio in Greer, Sc!!!!

Nick opened a new store last week and will be managing that store until the next store opening. So it's changes in work for both of us.  We are all settling into our new lives out here.  And yes, even after a year and half, it still feels new.

2 years

it's so hard to believe that it has been two years today since the transplant. but then in other ways it feels like forever ago. so much has changed since then. so much is different. all day my mind has been replaying over and over me walking into the surgery waiting room without nick and seeing my mom, julie, natalie, chelsea, jill, adaira and alivia waiting for me in one of my weakest moments. i think i keep seeing them because i miss them all so much right now and i know they are missing owen today. 

i'm so behind on this blog i don't even know where to begin. i think i'm just going to start from right now and do my best to keep it up. Halloween is soooo much our holiday with family and friends, it's really got me missing kc right now. i just need to get thru this next week then i think i will be back to normal. (not that i think i was ever normal to begin with) Owen is doing absolutely awesome health wise. we are still trying to figure out the best place for him with school. we just had a big evaluation meeting with his school this week so i'm willing to give it a little bit more time to see if works out for the better before we really start exploring other options. Livi is doing awesome in school. she has all A's with one high B....since when is a 92% a B?!?! she has also made quite a few friends in our neighborhood. they knock on the door daily for her to come outside. Noah is still his sweet little stinky self.  

we don't have a trip back to kc planned anytime soon.  :-( we are worried about driving back in the winter and possibly getting stuck/snowed in somewhere.  we do have a big i mean HUGE surprise planned for the kids for christmas ;-).  the weather is absolutely perfect here right now.  we've had the ac off for over a month.  last weekend we drove this scenic route highway  to see all the fall colors of the leaves in the mountains.  it was beautiful!!!  i love fall leaves!!  Nick starts a new positions with QT next week.  he will be a store opener/manager.  he is really excited for the change.  i started working part time in a salon/spa about five weeks ago.  it is defiantly not hair spray cafe, or even anything close. :-/ but it gets me out of the house and talking to people again. 

                                       

Birthdays, Beaches, Boo-Boos and Backwards Bingo

i've got a few months to catch up on here.  we've been so busy with house guests, mini vacations and special occasions.  i've been loving every minute of it.  lets start with april.  we  took the kids pigeon forge/gatlinburg TN to go to dollywood for liv's 8th birthday.  the kids didn't know that aunt nat nat and uncle dom were surprising them with a visit there.  the kids were completely shocked.  we were all cying.  then about ten minutes later i was completely shocked when my mom walked up.  nat and dom surprised me with my mom.  we were all crying again.  i didn't realize till then how much i really missed my mom. 

this is noah walking with his ya-ya....so cute! we had such a fun time at dollywood.  the whole area is like branson but with mountians instead of lakes and a pancake house on every corner. we had booked this cabin for us all to stay in that was really in the mountians.  it was a up and down windy road to get to it only to discover we couldn't get our suv up the steep gravel driveway.  it was insanely steep and we were sliding down it like it was snow and ice.  so to get back to where we had cell service again to call the rental company we had to drive back over the mountian and thru woods.  liv turns white as a ghost and all hot-n-sweaty.  we have to pull over for her to get sick on the side of the road (or should i say mountian).  we discovered in this trip that she can get car sick :-(  she was so upset.   we ending up getting a different cabin right off the main strip that was less mountian-y.  we would totally go back to it, it was so nice.  after dollywood took liv for a b-day dinner at hard rock cafe and the table they sat us at was right in front of a huge picture of roy orbison.  he was one of my dads favorite artist so it was a much needed sign that my dad was with us that night.   nick fell in love with gatlinburg and can't wait to go back in the winter for skiing. 

all this happened before livs actually b-day so she was surprised again when we had a little family party for her on her actual b-day.  it's so hard to believe that she is 8 years old.  she is really coming into her own out here.  she did so good at school this year and transitioned so smoothly with the move.  we couldn't be more proud of her.  nick's parents came to visit us the end of april.  they were our first offical guests at "hotel hughez".  it was a much needed visit for everyone.  we had a great time catching up and taking them to the uqinue greenville spots we have fell in love with.  in may we took the kids on a quick weekend trip back to folley beach in charleston.    

the beginning of june nat, dom, my mom and my niece adaira finally came to greenville.  we started the visit with a quick trip to me and nicks new favorite spot...the beaches at charleston!!!  we had no idea we were such beach bums :-D  as soon as we leave we are planning our next trip back.  my thoughts are if we are going to have our kids this far away from friends and family we need to take full advantage of what we can offer them here that we couldn't if we were still in kc.  as soon as natalie got here she said she had to see "that charleston place" that me and nick couldn't get enough of.  and guess what???  they all loved it too!!!  i seriously think everyone needs to visit charleston at least once. 

we started celebrating owen's 7th b-day in charleston.  nat, dom and adaira went back to kc after 5 nights :-(  my mom is still here.  the next weekend nick's mom and niece lola came to celebrate owens b-day some more.  he got to pick a resturant to go eat at, he picked cracker barrel.  he's is such a nut!!!  he loved every second of it.

on his actual b-day we had some more fun planned.  liv made him this crown that he wore all day long, it was so sweet.  we took him to frankie's fun park (kinda like cool crest , chucky cheese and dave-n-busters all in one).  he is obsested with super mario right now.  his fav being luigi and yoshi because they are green...of coures right :-).  so my mom and i got him everything mario bros we could find.  he was in heaven.  he is doing so excellent health wise since we've been here.  we are only doing labs and dr viists once a month which i huge difference from the once a week we doing for the year and 4 months after the transplant.  i worry everyday that i'm doing everything i can keep it this way.  and knock on wood when i say this but i really feel like for once that i've got a handle on it and can breath easy...finally.  now really....wow....how can he be 7 year old?!?!?! 

after owen's b-day party when we were getting the kids ready for bed noah slipped in the shower busting a spot by his eye open.  we had to take him to the er to get  stitches.  poor little baby was so brave.  he must of learned it from watching his big brother at his appointments. nick on the other hand was his typical self getting all light headed when he sees needles :-/.  it was a good thing my mom was here so we didn't have to bring owen and liv there with us.  the only positive i can make out this happening is that we got to see what the childrens er was like here greenville so we could feel comfortable if we ever have to take owen there (knock on wood again).  i hope that never happens and i hope a never have to say "the only thing positive about going to the er" ever again too. 

today was my moms birthday.  i've loved getting to spend the whole day her.  i've really loved getting to spend the whole month with her.  today i took her to lunch in this little 1800's cottage.  i made her a tye-dyed cake (check facebook for pictures).  then we went to play bingo.  it was the strangest game of bingo.  we still dont know what was going on.  they gave you free numbers or free rows.  almost every game was called triples, where you had to get 3 bingos on one card but they gave you half the numbers to start with.  one lady won the bingo before any real numbers called. it was so weird!!  we were so cunfused.  one of the ladies that worked there asked us if we had ever played bingo before?!?!  we were like yes!! but this isn't bingo!!!  we laughed the whole way home and i'm sure they were laughing at us when we left too.   

this is gonna be a long one

so far so good here in south carolina. we've been here over 6 weeks. i still have some unpacking to do. i have plenty of decorating to do. but it's starting to feel like home. Nicks store has been open for a few weeks and is keeping him so busy. it's so fun to see a whole town crazy and excited about quik trip being here. someplace i've grown up going to and nick has worked at for 15 years. these people are just seeing it for the first time or have seen it in atlanta (hour and 1/2 away) but go in to them and gawk like they are in disney world. it's so funny.....good thing we love quik trip too!!! i'm still trying to find my favorite grocery store. the kids are doing great with the big change. they love all fun stuff we are finding to do outside.
i have to talk about my favorite things about living here. i get to stay home with my kids!!!! it's not all fun and play, it's a lot of work but so worth it. "russell" you told it was pretty here and boy were you right!!! greenville is in the foothills of the Appalachian mountains so it's absolutely breathtaking to get to see mountains everyday on my way to take/pick-up liv from school or on my way to wal-mart. the cheap fun weekend trips are endless. The weekend before last we drove 3hrs south to charleston, SC. we are absolutely in love with that town. the kids got to see the ocean and touch the sand. i can't believe we can drive 3 hrs and take our kids to the ocean. i don't have pics to share from that trip on here because i forgot to charge the stupid camera battery.....boo!!!! but don't worry, there will be plenty more trips there to capture on film. easter weekend we are surprising liv (and the boys) for her b-day which is april 10th with a weekend trip to pigeon forge, TN. we are taking them dollywood. i can't wait to drive thru the mountains again.now for some catching up. owen started kindergarten. in a big normal public school. he isn't going to our home school with liv. he goes to a different one across town and it's seems to be a good fit. they wanted him there because they always have two registered nurses on duty so the are better equip to take care of his medical needs. he's not as crazy about it just yet as he was CCVI. i don't think that he will ever have a teacher that loves him as much as miss sarah does at CCVI. at ccvi there were about 10 kids in his class and now he is in a "normal" class with 25 kids. i asked him what he didn't like about his new school and he said "it's too crowded and everybody gets in my way" you'd think it be that the bus picks him up at 6:15am but thats no worries for him, he's always been my early bird. his favorite things are riding the bus and bringing his lunch. livi is doing great in school. her school (our home school) is huge!!!! there are 9 2nd classes with 25 kids each!!! and nobody rides the bus so i take her everyday. remember what i mentioned earlier about seeing the mountains on the way so i really don't mind taking her. on feb. 29th we took owen to his first appointments with his new drs at the Levine Children's Hospital in Charlotte, NC. it's an hour and 1/2 drive. a very pretty drive and i haven't mentioned this yet......there is an IKEA there!!!!!! i get to take owen to the doctor and shop at ikea every month, yes please!!!! i'll start going to ikea just once month soon, as of right now i've been 4 times :-) ok back to owen's dr visits. LCH looks nothing like CMH. it didn't even make me feel like CMH makes me feel. that's why when i was checking him in to see his new kidney dr, dr masengill, i started crying. i missed children's mercy. the receptionist didn't know us or why we were there. i really started to feel like we made a huge mistake. when it's time for the dr to come in i'm all good and calm. she comes in and introduces herself then says "you won't believe who i saw this weekend and did he brag a lot about you......dr warady!!!!" his kidney dr from chm. my heart sank and tears fell down my cheek again but i was happy. it's was my first sign that it was going to be alright. my next sign was when the child life specialist (angie was the best at cmh) came in with a goodie bag full of all owen's favorite things. a Frankenstein tattoo, halloween book and more. she got a get to know owen email from angie at cmh. made my heart happy. the rest of the visit went great. i really think they will be a great fit for owen. after that appt. we went accross the hall to the ortho. clinic to have his cast removed. the dr comes in and says "so gail did his surgery, she's great!!!" he knows the dr that did his leg surgery at cmh by her first name, another sign. :-) they removed owens cast that he had on for the past six weeks. his leg looks so little. it's still a little hard for him to walk but his foot stays flat!!! we have a new brace that he has to wear for at least another 3 mos. like always he's handling it like the rock star he is.

my next big announcement is that my little 3 year old noah is potty trained!!!!! yay!!!! it only took a few days of a lot of mistakes. but he has been sporting underwear all day for a few weeks now. he still wear pull ups at night. he is growing into such a sweet little dude and love spending my days with him. so proud of him!!!! now to get owen potty trained :-/

GrAnD OpEnInG!!!!!!! Hotel Hughez!!!!! now accepting reservations. each stay includes weekday continental breakfast/deluxe breakfast on the weekends, adorable 3 year old wake up calls, free wi-fi, airport shuttle service, neighborhood outdoor pool, greenville tours and good company. more pictures of the property coming soon :-)

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it is 11:20 pm on march 19th 2012. i've almost made it thru this day, the day that marks the 3 year anniversary of the day that i lost one of the most important men in my life......my dad. the hardest part about moving here was leaving the last house i will ever live in that my dad has been to. i will never see him walk thru my front door. i would love to show him SC. he would love talking to nick about all this new quiktrip stuff. he would just be in stitches hanging out with noah. he would shocked at owen's accomplishments. he would stunned at liv's beauty. thank goodness it's now 11:34 and this day is almost over :-(

#22

tomorrow is owens 22nd time in the children's mercy operating room and it very well could be his last time. i have to say, as weird as it may seem, i'm kinda sad. i hope and pray that it's his last surgery but it's most certain his time having a surgery at children's mercy. children's mercy has played a huge role in our lives for the past 6 1/2 years. since October 25 2010 i've taken owen there at least once a week if not 2 or 3 times and not to mention living there for a month. i'm going to miss so much about living in kansas city....family, friends, ccvi just to name a few....and children's mercy is defiantly high up on that list. i truly believe that they are the reason that owen is still here and i will be forever grateful to everyone there that has touched owen.

this is owen's favorite thing to do at children's mercy. push the green (his favorite color) button to change the color of the sky in the lobby. we do it every time on the way out.
owen with his kidney doctor dr warady at his last office visit. he's owens favorite dr and i have to say he's one of mine too!!!owen's transplant nurse diana. i'll miss her calling to give me lab and med updates.
owen's favorite person at children's mercy...angie!!! she a child life specialist. every monday morning owen asks "do you think angie is going to be there today?"
these are the fusion nurses (penny, amanda and mara) that have drawn owens labs every monday morning for the last year and 2 months.

dr warady has referred us to a great dr in charlotte, north carolina. i'm nervous to start this new adventure with owens health care but have hope that we will transition smooth and will love the new hospital as much as children's mercy over time.

owen's surgery tomorrow is the re-do surgery to lengthen his achilles tendon in his right leg. this is the surgery he was suppose to have back in july but because of his heart svt it was cancelled. then he got that stupid stomach virus that he was FINALLY cleared of over christmas break. so we were finally able to reschedule this leg surgery. which nick and i are so happy we could get done before the big move. another thing that happened with owen being cleared of the virus is he could finally start school.....yay!!!!! just kinda stinks that his last two weeks at ccvi will be sent in a cast. like every obstacle that gets thrown in owen's way, i know he will come thru like a champ!!!

so the big moving day is Feb. 2nd. natalie and nicks mom julie are driving along with us. we are driving both our cars there so we have enough room for all the stuff we need to have with us. it's about a 16 hour drive to we are going to do it in two days. the plan as of right now is to stay in louisville, KY. nat and julie will be flying back on the 7th. we will need to do some painting to the new house before all our stuff arrives on monday. it will be so nice to them there to help us out.

the weight has been lifted

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.

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.

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 :-)

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" :-)

"just owen" was also able to a bath for the first time in 4 weeks. they give me these warm bath wipes to clean him every day but his hair hadn't been cleaned since he got here. :-/ but thats all better now!!!!
noah and owen playing with aunt nat nats ipad. wednesday morning nat came to the hospital to relieve nick for work at 5:30am. she usually just tip toes in and falls asleep till owen wakes up because nursing are messing with him around 7am. but this wednesday she comes in and owen is completely under the covers and she notices they are moving. so she says "owen what are you doing?" owen says wide awake "im hiding from you" so needless to say natalie did not get to go back to sleep and played games and movies with owen on her ipad till i got there. isn't she the best aunt ever!!!!!!

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!!!!

so far so good with him eating solids. he hasn't complained of any stomach pains. seeing how his stools are tomorrow will be the true test to how his body is handling this. today was the first day that nick and i didn't feel guilty when we were eating.

earlier this week i took liv to the selena gomez concert. we had bought the tickets before owen went into the hospital but the timing was perfect. gave me and her some perfect mommy and me time. made liv feel so special and loved. i had the best time with her.

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?" :-(

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!!!