Monday, June 29, 2009

such a good life!

first of all i want to share good news...we heard back from mark's test at national jewish, and i all looks good!! we feel like we can finally breath, knowing that mark's sarcoidosis has not spread to any other organs except his lungs. we are praying that is stays that way! we will go back in early september for more testing. they will repeat his ct scan of his lungs to see how they look. we continue to pray that mark will go in remission soon! if he is not feeling a lot better by the next appt, we will talk about doing some chemo to help knock out his immune system....we are hoping to not need this but feel we are ready to do anything to help him get into remission asap!
thank you for all the support and love through all this testing. it was a long couple days and we feel so blessed to have gotten such good results.
one good thing about sarcoid is that we, per doctors order, have to take it easy! we now are forced to stay home a lot more to help mark get more rest. it has been such a blessing. we often times get so caught up in the business of life and don't take time to get really quality time as a family. well that is not the case anymore! we get a lot of nights home just hanging out and being together! I LOVE IT!
here is a couple pictures of some of my favorite moments of my life! i am so lucky to have such an amazing husband. he loves me and the girls so deeply. i love just being with him no matter what we do. i also have the 2 most amazing girls! they bring me such a joy! i am one lucky mama!
this sweet girl just loves to pick flowers for me!
fun times just hanging in the back yard!

the loves of my life!

she is so much fun!
how cute is she?

Friday, June 26, 2009

fun times with auntie kerry!

kerry came for a visit. we love when auntie kerry comes! we love hanging out with her and the girls LOVE to play with her! fun times are always had when she is visiting. despite us all getting the stomach flu, we still had a fun filled time! we went to family night at little monkey bizness :) so much fun! here are some pictures from the fun night!

kerry got a family pic before we left!
kerry and the girls!
kinley loves the slides
kya wearing her new outfit from auntie kerry!
my brave baby!
kya loves the costumes!
dada and kinley
kya took this picture my monkey mask :)
kya and auntie kerry coloring
kerry and kins

fountains

we headed to the fountains a couple times this week during kerry's visit! it was kinley's first time actually participating in them...and she LOVED them! she crawled right in and even got the classic spray right in her face...and all she did was laugh! gotta love it. kya LOVES doing anything to do with water. i love watching her interact with all the other kids. she is the quickest to make "friends". i love how when she forgets their names she calls them by the color they are wearing. she really liked pink and orange girl the best :)





summertime!

i love summertime!! i love playing outside, i love parks, i love the pool, i just love it! i love watching the girls play together! so fun!







Monday, June 22, 2009

not really a "happy fathers day" i was going for :(

i had great plans for fathers day. i had gotten 2 joining rooms at embassy suites for sat night. i had ideas of swimming with the girls, hanging out, celebrating mark, and overall having fun!! well we checked in on sat, and i was noticing i was not feeling well. i tried to ignore it... we got the girls naps, went swimming, but i kept feeling not so well so i went to walmart to grab some pepto. it kept getting worse....i told mark i was sure it would go away. well around 800 i started puking...and spent the entire night in the bathroom puking my brains out ( sorry). i felt horrible not that i was sick, but that this was happening to our plans for marks fathers day! at 6am i told mark i really didn't know how i was going to make it out of the hotel. i finally got a hour of sleep and woke up to make it down to the lobby for the amazing made to order breakfast (that i could not look at). we headed home and i headed for bed for a quick nap hoping i would wake up feeling totally fine. when i woke up mark was looking pale and i knew it was moving to it's next victim. by sunday night mark and kya were both puking and we were all miserable. our fathers day gift was a basket filled with grilling supplies, and fun snacks for the day including smore supplies for a fathers day fire. it got nicely put away and we hopefully will put it to use someday soon! i feel so horrible for mark that he could not be celebrated, but i promised that we would do a redo.
i am hopeful that we are all turning a corner and that everyone will be feeling better soon! it was hard for me to see mark sick in combination with his sarcoid disease. he almost passed out this morning, it brought me back to the day he went into the hospital...and scared me! i am so glad to see him up and moving around tonight with color in his face!
most of all i want to tell mark how much i love him! he is such an amazing husband and father! i could never of dreamed of being with such an amazing man! everyday i love him more! i love to see him with the girls! they are so lucky to have a daddy that ADORES them and will do anything for them! he is the perfect role model for them of what it is to be a good, honest, caring, genuine, person who loves the lord! thank you babe for all that you are! we love you more then you will ever know! and i promise to redo fathers day soon!!!

Thursday, June 18, 2009

National Jewish - #1 in Respiratory Care since 1998

So I am a work in progress. Good news is, my testing is complete for round 1 at National Jewish. The good news is, no one looked at me while I was there and said "I am so sorry...it doesn't look good..." We don't have any official news at this point. Apparently the doctor has to look at my stuff and make the call. But, I am off the chart at blowing, and I suck pretty well too. Those were the type of words that the pulmonary (lung) technicians used when I had to do my testing. I am pretty normal, and that is a good thing. You haven't really lived until they lock you in a body booth and tell you to breathe through a mouthpiece and the shutter closes meaning you can't breathe for a couple seconds, then you push as much air out of your lungs as possible, take a huge breath, and then blow out as fast as you can and longer than it feels like you should. But that is what I did. Today, they wanted to give me the methacholine challenge. It isn't that exciting, but it tests whether or not your lungs react and start to constrict indicating asthma or something like it. You breath deep, you blow out, and then they give you more nasty stuff, and then you breath deep, you blow out, rinse, repeat, and whatever.
I am now wearing a Holter monitor for the next 40 hours or so. Keeping track of my heart and whether or not there is anything funny going on. From the looks of the echocardiogram, which was really cool, the structure and flow in my heart look normal. For those of you who don't know what an echo is, it is basically an ultrasound of your heart. They even did a 3D version. The coolest part was the agitated saline portion. I got an IV, and while they have your heart on the screen, they inject the saline with tiny bubbles in it and it almost instantly appear going through your heart. They are looking to see if anything is crossing from the left to the right side of my heart indicating holes. Nothing going on there, which is a good thing. I have no idea what the ECG indicated that shows the electrical impulses in my heart, and that is what sarcoidosis tends to affect. We will keep you posted when we find anything out, but you will have to wait with us at this point. We are so lucky to be less than 20 miles from the best respiratory care hospital in the country. I wouldn't like traveling states to do all this. A big thank you to my wonderful wife for sitting through all this with me. It would have been more nerve wracking without you.
There are a few funny things that go along with all this. Perhaps my finest moment came last week when I was in the men's restroom at work washing my hands. One of the older "higher ups" at the office was also washing his hands. Now Tom has gone through a number of health issues and is always interested in how I am doing. He then asked if they had given me any medication. When I responded "Prednisone", he had a very fatherly smile, reached up and squeezed my cheek, and replied "That will do that to you." "Yep." And we walked out. What else do you say at that point?! If there was ever any doubt about "moonface," it is gone. Dang.
Can I just take a moment to tell all of you how amazing my wife is? Very amazing. Unbelievably amazing. Ridiculously amazing. You get the idea. She has been a rock for me. Our house was always clean, but it is the next level now. She has supported me in everything. Been there for the doctor appointments. Is always telling me to take it easy and rest. She mows the lawn, takes care of the girls, and takes care of me. She doesn't ever stop. Brooke I love you. You don't have to do it all, but you do. Thank you isn't enough. You are the best...

Tuesday, June 16, 2009

big testing day

tomorrow we have our first big day of testing at national jewish. the plan is to do these days every 3 months for the next 1-3 years until mark is hopefully in remission. since the doctor is concerned with some symptoms mark is having with his heart we have having another half day of testing on thurs since there is more scheduled. at the end of thurs mark will get a heart monitor he will wear to watch for an abnormalities in his heart. we are both ready to figure out if his heart is disease free! it will be a full day going from one test to another. we check in at 9 am and mark's last test end around 5 pm. i will update and let you all know if we find anything out tomorrow! thank you for all your love and support through this journey!

Sunday, June 14, 2009

more fun times with friends!

this week we went to the new little monkey bizness in parker with mandy, tommy and kate. it again was fun as always when we get together with them. the kids love playing with each other and mandy and i got to have a yummy cup of coffee and visit! i am now a HUGE fan of this place and plan of coming here often!





fun times!

this weekend we went to parker festival. we were not sure if the weather was going to cooperate with us, but it ended up being a great day! we met the savage family there, and ended up running into the ochocki's too! it was a fun day filled with carnival rides, good music, turkey legs, roasted corn and the cob, and of course some cotton candy :) the wind was blowing and i think when i sprayed the girls with sunscreen it blew away ...they did get some sun!! we found out that kinley is not a fan of carnival rides of ANY sort :) she was perfectly content to sit and watch from her stroller :) kya had the time of her life! what a great saturday!!!!!










Thursday, June 11, 2009

the wake up storm!

this last week has been a hard one. i was not completely sure why, but i felt so beaten down. i think the reality of this disease continues to set in. the day to day uncertainty of what it will bring is wearing. the change of life, the loss of normal, the fear, the frustration, it at times seems too much!
the doctor said that as much as we can we need to work on removing irritants from our home environment. this means changing sheets every other day, washing all our bedding 1-2 times a week, vacuuming the entire house daily, vacuuming the mattress, the curtains....basically making our home ultra allergen free. i am lucky enough that i do LOVE to clean. for me it is almost therapeutic to clean. but now that i have the pressure to do it everyday, it is wearing on me. my days FLY by and i collapse into bed at the end of every day. i am so thankful that in general i love to do this. but i am starting to feel like i am treading water to keep my head above water. between working 2 nights a week, being a stay at home mom, doing all the yard work, the cooking, the shopping, and all this i was feeling overwhelmed at times.
this has also been a hard week for mark, he had a hard weekend and sunday night felt like he had taken 2 steps backward. he is continuing to wean off his steroid therapy. we are hoping that this disease will continue to head towards remission. we know that chemo is an option to help mark towards that direction, but we pray that his body can do it on it's own.
he went in today and had his eyes checked and PRAISE THE LORD there are no signs of sarcoid! he will continue to have yearly checks, and has to have his doctors phone number with him in case of any sight changes. sarcoidosis can blind you in a matter of hours if it goes to your eyes...very scary.
on the 17th and 18th of next week mark has his big days of testing at national jewish. they will be checking out his heart and doing a lot of lung function test on him. he has to wear a holter monitor to watch for any heart issues. this is a very scary thing for mark and i, and we pray that after the testing we will get good news that his heart is clear from disease! please pray for that :)
the song i have so leaned on during this time is "praise you in this storm". we have had some crazy weather here in colorado. we actually have alot of damage done to our house in the big storm last sunday...a new roof among other things need to get done :) i think god was trying to give me a real life wake up call to why i have been struggling this week. i have not been turning to him.....
i found myself this morning listening to this song...it says he has every tear we have cried in his hands, that he never leaves my side! what a comfort! i am so lucky to have a god who walks with me each day! i realized that this last week, i have been trying to do everything on my strength.......it is no wonder i am feeling down! i need to lift my eyes up and realize that my strength comes from the "maker of heaven and earth". through him EVERYTHING is possible!!! thank you lord for again reminding me of my own weakness and your amazing strength!!
tonight the ladies from my bible study are having a dinner making party for me and another lady in my study who just had surgery to remove cancer and is about to start on 8 weeks of chemo!~please pray for julie as she starts this treatment on monday!
i feel so blessed to have this group of ladies in my life! i am excited to have a night out of fellowship with them!! kya is going to spend the evening with my parents so mark can have some down time too!
thank you everyone for your kind words and encouragement! you have no idea what that means to mark and I!! the support we have gotten is such a blessing!

Tuesday, June 9, 2009

maci's 3rd bday princess party!!

maci turned 3 this last week. she had a princess party. all the girls came dressed up! it was too cute! sonya did a great job making the party fun for everyone! kya LOVED it! my mom even came dressed up as a princess!! so cute! she is the best gaga!!

all ready for the party!
sweet cousins!

birthday girl!
curly headed cousins!
princess gaga with her grandkids ~minus connor :(

sun and storms...that's colorado :)

this weekend we had a ton of fun outside. kya had her first swimming lesson at our community pool. her class is small with just 3 kids in it~ so nice! she had so much fun! we also played a lot outside in the backyard enjoying the nice weather. sunday afternoon as i was getting ready for work i heard the storm sirens going off and asked mark to look outside~ he was shocked with what he saw! a tornado! it ended up touching down within a couple minutes right by southlands mall! (mark was the civil engineer that built that mall and the new lowes that just opened up and now i am sure he will be getting a lot of calls to do some more work!) no one was hurt thank goodness, it is amazing to see cars and huge dumpsters lifted to blocks away from where they were! we also got some hail about 2-3 inches in diameter! we have the insurance claims coming to check out our roof as we now have some nice pitting on it !
this is very typical colorado weather in the beginning of the summer, but it has been a while to see a tornado that close! mark was amazed~he has never experienced a summer storm yet!
here are some pictures from fun exciting weekend!
kya at her 1st lesson
doing so good!

girls playing in the yard!
kinley loving a cool snack!
what we saw right outside out yard!

Thursday, June 4, 2009

kya singing at her graduation

video video

kya's preschool graduation

last week kya "graduated" from preschool. so crazy that she finished her first year of school! next year she will be in pre kindergarten and then on to kindergarten next july! our elementary school is on year round so next july she will start kindergarten! it almost could make me cry!
she has LOVED being in school this year! she learned so much i am amazed! she can write her first middle and last name. she is starting to read and add! who would have thought a 3 year old could learn so much while having a blast doing it!
i am so proud of her and the person she is!