heart strength DJK turns 1!

Can you believe that my sweet baby nephew/godson is one?!?!? I love every little bit of this kiddo and his monster themed birthday party!

 

 

 

... love doesn't count chromosomes ....

where in the world

the cabinets after i removed the inner panels

BUSY! It's nice to not have down time to sit around and be bored, but this month has flown by and I don't quite know where it has gone. My weeks consist of work and getting work things done -- which I'm doing pretty good adjusting to the snails pace of the other office mainly because I have 2 million other things that I'm working on for work. Weekends have been filled with watching Jax & Davis for my sister, teaching handwriting classes at Gigi's Playhouse, and attempting to finish the kitchen project that I started like 6 weeks ago. I'm not one to procrastinate a DIY project, but I just haven't found time for the tedious trim work and the 2nd coats and polyurathane. Here's a couple of 'in progress photos':

The right side of the kitchen is done (except the trim) .. you don't even want to know what the right side looks like ... And of course, here is the obligatory little boy mohawk picture of my nephew. I love him to pieces.

 

strength & scars

Davis is a rockstar. He's 3 days out from his open heart surgery and he's already smiling and laughing .. granted he's still on some pain medicine .. but rightfully so! 

I love this little guy!

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heart strength djk

Today's motto:   Today is not about me ... today is not about me .... today is not about me ....

Today is about Davis. Davis had his open heart surgery this morning and flew through it with no speed bumps. Tonight, he's resting peacefully (aka heavily sedated). He's still on a respirator and they're planning to take it off tomorrow morning. Till then it's just sweet dreams for this strong kiddo.

It's been a long day. I went to work this morning instead of sitting at the hospital for 10 hours with my family -- no one seemed to mind. When I show up to the hospital the parking lots full, but I go in anyway. I sit for 10 minutes while a mom puts her 4 kids in her minivan only to have some punk old lady and her 2 guests steal my parking spot (after acknowledging that I was indeed going to park there). I rolled down my window and the gentleman said 'ha, that sucks, go find a different spot'. FUMING because at this point all I want to do is see my nephew, I drive off. I find another spot, park, then get in the elevator .... with the people that took my spot. They start snickering (not very becoming of a 60 year old woman). I turned to them behind me and say 'look, it's just rude, inconsiderate, and i hope that you have a nice day'. they instantly were confused and thankfully my floor had arrived. WHO DOES THIS ... .At a children's hospital non the less!?! Americans, sometimes you suck.

Got to spend roughly 3 hours hanging out with Jackson. We played trains in a long empty hospital corridor most of the afternoon, then one of the Children's Playrooms opened. This volunteer was great. She was very into playing with jax and he really needed that kind of attention with all those toys. Sitting in the playroom across from the library (on the 2nd floor MJH) all of a sudden there was a beep and a code blue announcement for in the library. One of the parents was having a seizure... Now, I know what you're thinking, good timing/place to have a seizure, but the amazing part of this was that we were in a hallway with no rooms/units/hospital beds and within 20 seconds after the beep there were at least 45 people in this hallway. I kid you not, people were running from all directions and within 20 seconds over 45 people had responded to this page. It was pretty amazing. I know code blue is the 'oh, shit' code, but seriously ...45 people, 20 seconds. It was really reassuring that Davis is in the right place to have a heart condition.

Again, the motto of the day: today is not about me .... today  is not about me ....

Insights: Every family has their own dynamics, whether good, bad, great, ugly, functional, disfunctional... to each their own. Stress runs high in hospitals, I get it. People turn off filters, they let emotions  run loose, they show their not so humane side. Myself included. It was a stressful day for my family. I'm a super understanding and patient person ... but when I'm stressed out  I just can't deal with other peoples BS. Like the nonsense, no need BS. The legitimate crap and complaining and yelling is understood .. None the less, I was very happy to get away from the hospital last night. Wish I could have seen my nephew & godson ... but tomorrow is a new day.

.... tomorrow is a new day .... tomorrow is a new day .... tomorrow is a new day ....

the only girl

Communication, money & matters of the heart.

That about sums up my life lately. To elaborate let me write you multiple more than 2-sentence-paragraphs-followed-by very few photos with no captions. ;) It's hard to separate the the 3 categories since they're so closely intertwined. But here goes! 

 

Communication: @ work, @ friends & family, @ boyfriend. 

I am so fortunate to have a general overall people pleasing attitude as far as getting along in social settings. I do what I say and say things how I mean them. That'll get you far. Do not be fooled, I have my moments ... 

 I have been an pretty awful communicator lately when it comes to actually being able to make plans with my friends that live here in town. Either my schedule conflicts, or theirs does, or my phone dies or I just plan drop the ball on what could and would be a great encounter with great people. 

I've been good about keeping up with my family, but could definitely do better.. I need to see my little sister, who btw is now a sorority girl1?! (And I thought we were so similar.. haha) 

The boyfriend communication has been amazing the past few weeks. Can't ask for more than calls, texts & emails that make you smile, smirk & reply with all kinds of sarcastic remarks!

Money: @ work, @ family, @ i hate student loans

I love my job. Unfortunately I feel like I'm drowning in debt and contemplating taking another weekend PRN job to pay some of it down. I figure why the heck not, I'm 25, the boyfriend lives 1700 plus miles away & I'm a true multitasker ... It might interfere with my weekend rowing plans here or there ... but I could always drop the extra job when I needed to .. PS Have I mentioned lately that I'm obsessed with my job at GaHand?!? The pace is fast and the atmosphere is light and fun, but serious and down to business. My co-therapist workers rock! 

Up with Davis' Downs has made over 250 dollars in our (my) quest to raise 1200 to donate to Gigi's Playhouse of Atlanta in Davis' name. They open on Oct 8th and I'm really excited to get involved as an OT volunteer. 

I HATE STUDENT LOANS.. and that I accidentally paid mine twice last month. That's a lot of money. SHEESH!

Matters of the heart: @ work, @ friends & family, @ kujo

I love my job. Enough said. --Okay, maybe not. Honestly who gets lucky enough to find a dream job at age 25 right after 7 years  of schooling!?!? 

My nephews are amazing little boys. Jackson is just in awe of his little brother .. or ignores him. And Davis heads to the cardiologist in the AM again to get checked up on and after turning 2 months old (today!) he's roughly 8 weeks from his open heart surgery. He's a champ for sure. Spent the last 2 Sunday's with them and my sister and Davis is just perfect. PERFECT.
I love my friends. From bicoastal high fives to the cry because some strangers house burnt down, they could not be more supportive of me. 

I miss kujo. I had a moment today where I was doing some mundane task (laundry) and it crossed my mind that she was gone. Then my phone rang. Saved by the really obnoxious droid ringtone.

 

etsy

I can talk all the talk I want about being a great Aunt to my nephews, or I can put "my money where my mouth is". 

Officially launched my Etsy website selling handmade, custom scripted bracelets to raise money for Davis' Down's. My goal is to raise $1200 to make a donation to Gigi's Playhouse in Davis' name. 

Wanna help? Spread the word! http://www.etsy.com/shop/ceckelkamp1

Just cut, copy, follow, share, buy, etc with the link above!!

photog & love

 Today was a pretty good day -- got/took my stitches out, spent time with my sister and nephews, started some arts & craft projects, submitted a photo to some cheesy contest, and still feeling pretty dang good. The to-do list is getting shorter ... didn't add anything to it today, but knocked 2 and 1/4 more off.  My nephews are getting bigger and more adorable by the day. My hip is tolerating being off crutches 80% of the day. Even walked around Michael's for a while without them. It wasn't pretty, but I did it. Stairs are a pain still, but hey, it's only been a week.

love.

Spending time with my nephew Jackson & my nephew/godson Davis

What a whirlwind of the past week. Spent the last few nights at the hospital with Davis before he came home! Spent my days at work treating patients, working on behind the scenes stuff and trying to schedule things around my surgery. Uhh, surgery. This week. Fun times. Not really looking forward to the boredom that will ensue by not being mobile for a week, but really looking forward to the fact that my hip pain will be gone sooner than later.

A letter from the Kohl's

As some of you already know Stephani and I had our second son Davis James Kohl on Wednesday July 20th. As some of you might not be aware of Davis was born with some complications. Davis has Complete AV Canal defect with his heart. Basically his heart is not fully formed correctly. As you know a heart has four chambers that oxygenate and circulate blood to your body. Davis' heart chambers do not have the full development of the individual chambers. The interior walls that separate the chambers have not fully formed and joined in the middle of his heart to form the four chambers. They call this a "hole in the heart" because of this he has needed to be on oxygen, not a machine to help him breathe but an additional oxygen supply to allow his body to get al the oxygen he needs. So the good news and the bad, with surgery in the next 6-8 months his hear should be fixed and only need minor ongoing maintenance surgeries during his life. The bad news is hat he has to have heart surgery and with any surgery there are risks and concerns. They are waiting to perform the surgery so his heart can grow larger and stronger. If for some reason there are additional complications they can do the surgery at any time, they just prefer to wait. The surgery is one that they do a lot and is pretty routine for infants with this defect. Davis is currently still in the NICU at the hospital and is getting the best care possible. We do not know a definite time when he will be able to come home but we and the doctors that are taking care of him are hopeful that it will be sooner apposed to later. In addition to his heart defect, as if it wasn't enough, Davis has been diagnosed with Down Syndrome. We do not know the severity of the diagnosis and we not fully understand the full severity of the down syndrome until he is older. Currently, Davis is no longer on oxygen and is beginning to nurse and eat from a bottle in quantities that the doctors and nurses like to see from infants with his diagnosis and age. He is improving every day and we are hopeful he will be able to come home soon. Stephani is recovering quickly from her c-section and has been walking since 24 hours after the procedure. She is a champ and we have been visiting davis daily a couple times a day when possible. We will continue to visit him and be with him multiple times a day until he his discharged from the hospital and is home. We will be starting an ongoing update website that will allow Steph and I to keep everyone up to date on his progress and share pictures when possible. If you would like to receive these updates please send me your email address and once the site is up and running you will get update alerts. We appreciate everyones thoughts, prayers, and support that we have been getting and continue get. I apologize for the late update on Davis condition but things have been as you can tell a little complicated and busy.



::: I love my sister and her babies! :::

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moose tracks

Love this little babe!

Davis update: He got taken off the oxygen today! ... Then put back on it ... but he's still doing great. Took a bottle in 15 minutes (used to take 45 just 2 days ago). Got put on the list of people who can visit him without a parent present today so I went to his 8pm feeding. Changed him, hung out with him, cheered him on through his bottle, then held him till he passed out in full on milk coma! So nice to spend quite time with my nephew, but I did miss the bonding time with my sis. I can't believe how amazing he is. Tonight was the first time I've seen him open his eyes super wide and just hang out. I think his extra 21st chromosome just makes him extra adorable! 

"Love doesn't count chromosomes"

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