i could really use a "WISH" right now

hello hello!!! life has been moving right along around here. we are almost 16 weeks out from transplant. so hard to believe. owen is doing good. he had an infection again-c-dif-not fun....basically gives you awful diarrhea. which is 10x worse with owens booty. he had some nights spent sleeping on the potty and one where i almost took him to the er. but once on the right antibiotics it got much better. this also meant that we had to continue getting labs twice a week for the last two weeks instead of only going once a week. but no worries, it now start this week. new routine, but easier routine. :-) we've been feeling very lucky thats all owen has gotten around here. we have all at some point in the last few weeks had some kind of bug...flu, stomach, cold or cough but managed to keep it away from him. just keeping our fingers crossed and knocking on wood we can keep it up thru the rest of winter. we've definitely got something cool to look forward to. owen has been granted a "wish" from the "make a wish" foundation. his two wish granters came to the house last weekend to meet him and discuss his wish. his first pick wish is to go to Disneyland...surprise surprise!!! we should find out more within the next few weeks. It's so exciting...we can hardly wait. something else exciting that happened here is that our little man Noah turned 2!!! now thats really hard to believe. everyday he continues to bring so much joy to our family. he has definitely entered the terrible twos but it is all worth it and forgotten every morning when i walk in his room to see his little sleepy, smiling face. we had a great b-day party for him that started with a family trip to the zoo to see the polar bear and ended with the perfect gathering of friends and family at fritz's at crown center. we had such a great time. thanks to all that made it!!!

the polar bear @ the kc zoo swims right up to this window before he does a flip off of it......so cool to see!!!

the big 2 year old!!!!

a few weeks ago i took liv to her first concert. it was miranda cosgrove aka icarly. we surprised her when she came home from school and she had to trade her reward marbles in to go. it was just me and her. i had so much fun spending that one on one time with her and spoiling her just a little bit.

ready for our girls night out....icarly here we come

1st concert

just a little bit spoiled

speaking of spoiled my sister natalie took owen out on his first "date" this last friday. she took him to play games at chucky cheese, to eat at t-rex where he got to build-a-dino and then for ice cream. she bought him a new outfit and cut his hair. she is the best aunt ever!!!

cute words from owen.....owen:mom am i available to go on a date with aunt nat nat on friday? me:yeah i think you can go owen: no mom, am i available? :-)

a pinch to grow an inch

okay, okay...now the voices in my head can stop telling me to update my blog :-) i'm slowing adjusting to going back to regular schedule. owen went back to school the first week of the year and nick went back to work this last week. which ended up a weird week with all the snow days and didn't really feel normal. right now a normal week should go like this....nick leaves monday thru friday around 5am, i have to get all 3 kids dressed and fed by 8am to get liv on the bus, noah to his sitters and owen to school downtown but now the new twist is that 2 days a week owen has to gets labs done by 9:30am at the kidney center. so last week it didn't really run like it should with the snow so we will see how this week goes. owen is doing amazing.....as always. he has even grown a whole INCH since the surgery!!!! he is probably a good 2 1/2-3 inches taller than noah.....yay owen!!! he really is such a trooper, when we go out he only needs to wear is mask when around big crowds and we were just running in somewhere real quick that wasn't crowded and when we got back to the car he said "mom you didn't put my mask on"....there was a time when he would fight me to put that thing on. right now our biggest struggle with him is potty training or even more just him letting us know when he needs his diaper changed. when he goes in his diaper it causes awful diaper rash because of his immune suppression. he won't tell us when we needs his diaper changed and because of his booty problems he goes quite often. :-/ it's a cycle i'm having a very hard time finding a way out of. but on a very good and strange twist in the story Noah went pee pee and poo poo on the potty tonite :-) if i can't get one i'll get the other...lol...i only laugh so i don't cry.

kids playing in the snow....noah's first time. he loved it until it was all over his face.

owen's first day back to school. his friends were so happy to see him.

some of our x-mas pictures i should have posted weeks ago

a silly thing that owen said....me:owen i'll be right back just lay there, don't get out of bed....i come back in his room to find him out of bed.......me:owen what did i say owen:don't get out of bed me:so when are you going to start listening to me? owen:hmmm...maybe tomorrow night. :-) gotta love his honesty.

busy, busy...merry christmas!!!

merry christmas everyone!!! it has been crazy busy around here and time is just flying by. the salon has been really busy the last few weeks. that is always a good thing. :-) my only complaint about that is that i miss nick and the kids. i've been so jealous that he gets to stay home all day long with the boys that i can hardly stand it. but i'm trying to not get too upset because i know i will have a lot to complain about when nick goes back to work in two weeks and my schedule will be 100 times more complicated. :-/ owen is doing really good. we are now doing daily bladder irrigation on him which are super easy because of the bladder access thru his belly button. we are doing these in an attempt to get rid of a bacteria called sudamoundous. he has had this bacteria in his urine off and on for as long as i can remember. the drs thought it was coming from his sick kidneys. so they were a little shocked when they saw it in his urine again now that both his kidneys are gone. now they believe that it has been coming from his bladder all along. since antibiotics can cause such bad diarrhea on him we are trying the bladder irrigations. so far so good. nick is doing good too. he is having a few small side affects but nothing that his drs are too worried about.
a few weekends ago nick and i took owen and liv on a date night. we went to dinner and to see the movie tangled. which was a great movie. we went to the theatre in blue springs and while there nick and i had a surreal and amazing moment. that theatre is where nick and i had some of our first dates over 16 years ago. it was so amazing to sit in the same place with two of our kids giggling and having a great time. and for nick and i to love each other even more than we back then. i truly felt our relationship come full circle that night. can't wait till noah is old enough to go with us.
today nick was asking livi to list 3 things that she is grateful for. when she was done owen walked over and said "i'm grateful for you daddy".............aren't we all :-)

Merry Christmas
Am

we are still here...6 weeks

hi all....i don't know where all my time has gone. we are 6 weeks out from the swap and doing great. we still have a nurse coming to the house twice a week for labs. still changing meds here and there. owen did end up having a virus that was causing the diarrhea and it seems to be getting better now that he is on a antibiotic for it. his appetite is way better now but his taste buds are totally different. he has been craving sweets but can't really have any because one of the meds he is on makes his body retain sugar. so it's been a struggle to get him to want healthier alternatives now. before he would take one nibble of sweets then turn it down or choose fruit which he doesn't seem to want now. it's just all so weird and different and hard to say no to him. beside all that he really is doing good.

we had a great thanksgiving. natalie and i hit up lots of stores on black friday. we've got the house ready for christmas. i think i'm done shopping for the kids but every day owen adds something to his list. he has been staring at the toy-r-us ad for two days. today i actually heard him yell at liv not to touch it because she would rip it. :-) it's really funny to hear him say because nick and i call him "owen the ripper" because he rips all paper.

it's late and i'm tired, so sorry this is a short post. i just wanted all my loving and loyal followers to know that we are still here. i will get some pics up later this week. have a great week!!

so thankful

happy thanksgiving!!!! i just wanted to write a little post about all that i'm thankful for. i'm so thankful that we are all home together. i'm thankful for the doctors and nurses that take care of my owen. i'm thankful that children's mercy is here in kansas city and we don't have to drive hours to get there. i'm thankful for all my amazing family. i'm thankful for all my amazing friends. i'm thankful for all my amazing hair spray cafe family. i'm thankful for all the random i love you-s i get at least 10 times a day from owen. i'm thankful for all the random leg hugs i get from noah. i'm thankful for how excited livi gets when i come home. i'm thankful that my dad has been watching over our family from heaven especially this last month even though i would still rather have him here. i'm thankful that noah loves trying to do everything his big brother does. i'm thankful that owen is here to get so annoyed and angry with noah. i'm thankful owen has his mickey button back. i'm thankful for my mom and all 3 of my sisters. i'm thankful for trevor and ben. i'm thankful for my in-laws. i'm thankful for our friday pizza and movie night. i'm thankful for CCVI and all owen's friends there. i'm so thankful for nick and his kidney's. i'm thankful for all the love i get. and i'm thankful i'm here to be thankful.

it's back

it's been 4weeks!!!! we are home from owen's feeding tube surgery. we came home saturday evening. owen was so great, of course :-) his biggest complaint afterwards was that he was so hungry. he finally got to eat something around 7pm and was much happier then. getting fluid in him and giving meds are so easy now. no more forcing and crying. owen has almost been excited to have it back, like he missed it. he has said several times "my mickey button is back!!!!!" they are still adjusting his meds and right now the diarrhea is back :-( but over all is doing really good......i started this post last night, this is how far i got when i heard owen screaming in his room at about 11:30pm. he was having awful diarrhea and his poor little booty was hurting him. so he sat on his potty seat leaned over on his bed sleeping while i laid/slept on his bed till 3am. it got even worse this morning before it finally got better this afternoon. it is doing much better this evening. we went to the kidney center today and the dr is running some tests to make sure he didn't get a virus before he changes or adds more meds. he also has lost some weight (which is no surprise to me after seeing how much came out of him) but they don't like to see that so they will be watching him even closer then they were before. today i have been exhausted, sad and frustrated. it's hard to really put why into words it's just a lot of moments, thoughts, passing, comments and events that i can't seam to get out of my head. i am so ready for thanksgiving and some black friday retail therapy. owen has been getting so excited for x-mas and actually asked me in his sweet little melt your heart voice "do you think santa will bring me lots of toys?" my new favorite answers is "who can say no to the boy in the mask" :-)

here are some pics from our last hospital stay......

silly boy

tired of me taking pictures and really wanting to eat

ZZZZzzzzzzzzzz................

he loves the puppet made for him at Trick or Treat on Delaware Street

i need to get him one of these for x-mas.....does anybody know where to buy these at?????

at home using his feeding tube for the first overnight feed

nick, liv and noah were all great this last week. nick still says everyday he feels more back to normal than the day before. every morning liv asks to see nicks belly so she can check how good it looks....it's so sweet.

tomorrow i'm going to try to be rested, happy and hopeful.....it is thanksgiving eve!!!! i'm going to attempt to make red velvet cupcakes from scratch with the kids. should be messy but fun :-D

surgery #18 will be tomorrow. the dr said that it's a little bit complicated due to being so soon after the transplant but still thinks it will be a breeze. if everything goes well we should be back home saturday night :-) owen, just like always, is being such a brave boy and asking all his typical questions.....you'll be right in the hallway? i'm going to be asleep so i won't feel anything? do we get to stay the night at my doctor? i'm so at peace and ready to get this done and just know that he be just fine. the only part i'm worried about is that we don't have to be at the hospital till 1pm tomorrow, the surgery should be around 2:30, but owen cant eat after 3am or have liquids after 11am tomorrow. it is going to be so hard to not let him eat anything all morning. plus i've always not ate myself when he cant out of sympathy.....thats no food till 3pm.....yikes!!!! we are going to be one crabby pair tomorrow. let's hope that time just flies.