Seems Like Yesterday

It seems like yesterday that I was carefully programming your dialysis machine, just one last time. Putting my mask on, carefully sliding my hands into those sterile gloves, laying out my "field," ever so meticulously as to not contaminate anything.

I could have done it with my eyes closed then. Given the test now, I think I could probably pass. You've lived your life now 4 months longer as a HEALTHY boy than sick. Yet, the journey we walked will never be far from my mind. To this day, I often awake to "phantom" beeping from your dialysis machine. Memories trigger the smell of the bleached down hospital walls, the beeping monitors and nights where I thought sleep would just never come. A journey like our's will never be far from my mind.

Yet, one little giggle and I'm back to reality. The reality that you're here. We made it. I'd be lying to say that I never waivered, because it was rough. But goodness, the sorrow was well worth the reward we've been given. You, sweet boy are well worth every tear we shed, every sleepless night, every heart aching prayer, every single day we spent waiting for your healing, waiting on God. You are worth it.

We're far removed from that. In fact, it's been over a year since our last hospital stay. Yet, in my closet, sits my "emergency bag," still packed, and ready to go. It's that dreaded bag that I quickly threw into the car more times that I care to remember for unplanned hospital stays that I needed to be somewhat prepared for.

Tonight: I unpack. :) I let go. It's time to move on. It's time to really start living, to let go of my fear, because you seem to have none. You are the bravest boy I know and the way you take on the world is so refreshing and encouraging. Watching you live gives me so much joy. I pray that you never lose your zest for life, my sweet, sweet angel boy. :)

 

 

In the 2 years that have passed since Owen's transplant Owen has grown 8.5 inches and gained 6.5 lbs! (Nope- not a typo, that's eight and a half inches!!!) So for those of you that keep commenting on how tall and skinny he's looking- you're exactly right! Before transplant Owen struggled to stay in the 10th percentile for his height. Today, he ranges from 60-70th percentile for height and about 60th for weight! We were told by our doctors in Cincinnati that kids usually experience "catch up" growth with an early transplant...but we did not expect it to be this much growth! However, we are SO thankful for a growing, healthy boy!

Owen has gone from needing 10+ daily medications, including weekly shots, and labs draws to now only needing his 2 anti rejection medications and 2 bladder medications, and monthly lab draws. When we transferred down here to Florida his new doctors could not believe the low amount of medications he requires, even for a transplant kid! His labs have been amazingly stable (except for one random liver snafoo, which seems to be an error, no occurance again!) and his latest ultrasound shows a very happy, healthy kidney and bladder! Praise God!

 

Since we have moved to Florida Owen has begun an intense therapy regimen. He has 4 therapy sessions per week, and we are currently on the wait list for a 5th to open. He has speech 3 times per week, occupational therapy once and behavioral therapy once. I cannot tell you how important therapists are in Owen's life. The Lord has blessed us so much with amazing therapists with each move and this time has been no different. Per the usual, Owen has reeled them in and they have already fallen in love with him. Can you really blame them? :) Speech has been our main focus and his improvements have been so amazing, especially in the past couple months. Owen adores Ms. Laura and tries to give her no less that 10 kisses every time he sees her. In fact he even greeted her with "Wawa pway" (Laura, play) at our last session. Which is such a huge accomplishment in the speech world for Owen!

In fact this is a most recent text I received from Ms. Laura: "Since Owen has started speech here in August, he has met 9 goals and has 4 emerging at present time. He has progressed so much and managed to wrap me around his finger in that short amount of time- I adore him!!"

Owen works so very hard, and my heart just beams with pride watching him learn and really want to learn new things. Hearing his sweet voice say new words just makes me melt! And even though he asks for his Daddy at least 20 times a day, I would listen to it 20 more just to hear that giggle after he says it. :)

 Owen knows his entire alphabet, can count to 20, can spell both his name and Abel's, is working through and entire box of flash cards (pictured), knows more words than I can keep count of (yaaaay!!), knows his colors and shapes, animals and their sounds. I am insanely proud. :)

The past year I have seen Owen morph into this amazing, loving, caring boy. While he may not say much, the emotion he can evoke with his baby blue eyes and biggest, best hug I've ever had are all I need to know that this sweet boy loves me unconditionally.

He's finally coming into his roll of big brother and teaching Abel the ropes. I never imagine my life with two boys. Now that I am surrounded by dirt, worms, sand, sticks, and sweaty, sticky boys....I just couldn't imagine a life any sweeter. :)

I am sure that I will forever find it diffult to adequtly describe just how thankful I am for Carrie. Could you ever really honestly put into words how you feel about someone who voluntarily risked their life, surically to save your son?

Carrie's surgery lasted approximatly 5 hours. Her recovery: at least 8 weeks. Owen's surgery was about 8 hours. His recovery: much shorter. :) (In fact, the chunky boy who couldn't even crawl before transplant was out of his crib and pulling up before he was even discharged from the hospital!) In order for Carrie to donate she had to take all of her sick days from work, kind co-workers also donated their own sick days so that she would have enough to cover her time. Strangers donated meals to provide her family. She needed help with her two children at home: it was provided. The Lord's hand was covering every aspect of this transplant process. But what continues to amaze me is that she never waivered. Yes, it's true you only need one kidney. Your body functions perfectly with only one. But it's not a decsion to be taken lightly. Carrie shared with me that she felt God leading her the moment Owen was born that it would be her. She just knew. Wow. I still get chills. Praise God for a faithful woman, who loves Owen and who I could never, express my love and gratitude for. Not only did she change Owen's life she changed mine too. Without her, I know my story would be very, very different.

 

Jeremiah 1:5

"Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."

Happy 2nd Kidneyversary!

BIG Decisions on the Horizion!

It's been awhile, yet again. I suppose I can mark "be a better blogger" off my New Year's Resolution's List! We have some catching up to do; let's get down to business.

We are truly living in a joyous season of life. Our children are just so darn fun! The laughs and giggles that fill our house everyday keep my heart so full I think it may burst at times.

 

 

We had a wonderful Christmas, and were able to travel back home to visit family for a whirlwind week of squeezing in every minute of family time possible. It's never long enough.

 

However, I should say it was 75* on Christmas day down here and we spent the day playing out side and walking to our neighborhood park. I say, let's meet here next year, okay? We tend to prefer sand over snow. :)

The boys made a trip to visit Santa this year and you can see fun was had by all...

 

 It seems to bear a striking resemblance to our previous Santa photo....

 

I suppose Santa was able to forgive Owen's tears- The Daugherty Boys are on the road!

 

 

Whoever told me these two would be best friends...I'm looking for you. Best friends is not how I would describe these two...unless they are just constantly practicing for wrestling tryouts!

 

I give you exhibit A:

What appears to be a very sweet, tender moment in Wal Mart...

 WRONG! It's a choke hold...granted Abel is rarely innocent. The precious, brotherly moment was ruined.

This didn't end well for either of them. Abel packs some heat.

 

 

 

Big things are happening at The Daugherty House and we have some big decisions to make.

 

 

We are currently seeking The Lord for guidance in choosing the best place to send Owen to school for the upcoming year. He has qualified for a school for language development, which we strongly feel he would benefit attending. He would also receive speech therapy at school. The issue with the school is it is everyday, all day. So, due to his immunosuppresion, medication schedule and cathing schedule it's just not possible. I have a meeting coming up with the school system to set up his IEP (a plan designed specifically to meet each of his needs) and at that time we will be applying for hospital homebound services with co-enrollment. We are praying The Lord will open and close doors, leading us in the direction He sees fit for Owen.

 

We also have the option of sending Owen to the precious, loving school he has attended this past year. I hate the thought of not sending him there again as we have grown to love his teachers so much and have celebrated each milestone Owen has met with them. However, we feel a specialized school would better serve Owen and the needs that he has. But, we are waiting on The Lord to guide us, should he lead us back to our beloved school, we know their arms are open and waiting for us. I was so blessed as I received an email from the preschool director today saying " I want you to know how much we have loved learning from Owen this year! (And I mean that- he has taught us more about love, patience, compassion and innocence that we ever imagined.)" It just warms my heart to know how loved and accepted Owen is at his school!

 

Please be in prayer for us and we seek The Lord while making this decision. We have learned from very early on it is our job to advocate for Owen and this is a whole new realm! Pray that we will receive clear answers and that our hearts will be open and willing to follow where The Lord guides us, trusting that He knows where Owen will best succeed in the upcoming year.

 

 

 

I should brag on my littlest man for a bit, too. He is feisty, fierce and full of life! Quite the opposite of his gentle, (somewhat) quiet brother! This little guy goes and goes until he crashes. I realized the other day that my snuggles with him have become very few and far between. Only after sleeping and occasional boo boo, this little just doesn't have time to stop for his mom. He can count to 10 and knows most of his letters (all compliments of his big brother!) and carries his blankie literally everywhere. He accompanies us to each therapy session and typically behaves as well as a busy 18 month old boy can. :) He brings me so much joy, laughter and even a little frustration! But I just couldn't imagine our family without his crazy little antics and silly smiles and giggles!

 

 

 

 

 

 

 



Aside from choosing Owen's schooling we have a super fun (yet actually stressful!) decision to make very soon!

Last year Owen was selected to be a Make A Wish recipient! We didn't announce anything because we had intended on waiting until Owen could talk and request his very own, special wish. We were contacted in December saying that the time had come, and we had to decide on our wish. So, Owen's wish granters are coming to our house this weekend! We are so, so excited for him! This little guy is so tough, so brave and strong. He's been through so much I would give him the world if I could. So hopefully we will come up with an amazing, super cool Owen wish that will just bless his socks off!

 

 

I recently posted on facebook about needing prayers for Owen. Last week Owen's routine monthly labs showed a dramatic jump in his liver enzyme levels. Right now our doctors are not wanting to take any action until the viral studies (part of the labs that were drawn last week) come back. These labs take a little bit of time to see if any growth occurs to see if he is positive for some type of virus that would be causing his levels to rise. Right now those labs are pending. If those labs are all negative we will then look to other reasons for the change in his levels. Most likely, it would be one of his anti-rejection medications. In this case, we would lower the dose of the medication. Which, could comprise his kidney protection.

 

In all, we hate to see him have to fight off a viral infection because it is difficult on his body to fight infection while on his immunosuppression medications. And, of course lowering his rejection medication just sends shivers down my spine.

 

However, I have to trust that The Lord is in control. He holds Owen firmly in His hands and loves him infinitely more than I do. I can do nothing more than to lay my son at the feet of Jesus, knowing that it is He who holds his healing. Please continue to pray that Owen's levels will return to their normal level and pray for wisdom for our doctors. Also, pray that Michael and I will have peace in our doctor's decisions. This is the first "glitch" we've encountered down here and it's really making us miss our Cincinnati doctors. While we know The Lord has placed us down here and Owen is in good hands, the care we received in Cincinnati is a standard that few will ever match.

 



 

 

Psalm 86:15-17

" But you, O Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness. Turn to me and have mercy on me; grant your strength to your servant and save the son of your maidservant. Give me a sign of your goodness, that my enemies may see it and be put to shame, for you, O Lord have helped me and comforted me."

 



A Halloween Blessing

Yes, I realize it is quite the oxymoron to be talking about "blessings" in relation to Halloween. However, I love the way The Lord likes to work in my life and is constantly showing me, and teaching me in the most unexpected ways.

 

As I previously blogged about, Owen started preschool this year. I have been so very, very excited to participate in classroom parties and play dates. Keep in mind, I'm a little limited as the wild 15 month old keeps me quite busy. But, I was ready to jump in with the other "Homeroom Moms" and be that normal, stay at home mommy who has it all together. You know, kids are clean, house is clean, kids have amazing manners, and eat the wonderful, healthy homemade meals all together each night.

Who in the world put this crazy idea in my head?

Well, not only do I not have it all together, some days I wonder if I have anything at all together!

But alas, I wanted to at least give it my best shot. So I prepared cute little treat bags and bought juice and headed out with Batman and Superman in tow, ready for the Fall Festival, Costume Parade and Party Day.

We survived an hour. And then hightailed it out of there like the place was on fire.

Owen was less than thrilled with all the commotion going on and Abel was taking cupcakes, candies and juice from Owen's classmates.

 I left that day with tears in my eyes. Not because Owen cried the whole time and Abel was a tyrant, but because I felt the deep, piercing stares of those around me just trying to "put their finger on" what's wrong with Owen. If you're a parent with a special needs child, or really any parent, you've felt those stares. It's like they were burning right through me to my core.

I don't announce that Owen is a kidney transplant recipient. Or that he has sensory issues that make socializing difficult. That is not what defines Owen.

Owen is a joyful, silly, smart, Elmo loving, hug and kiss giving, tickle monster, miracle. And that's that. He may not sit at the table for crafts, or eat the brightly colored cupcakes. Hey, he may even cry through music class and refuse to play with kids on the playground.

 

But do you know what he does do? He brings me absolutely more joy than words could ever explain.

 I left that day feeling sorry for Owen. Feeling sorry for myself. And then the Lord reminded me of all that Owen does.

Most importantly: he lives. So I'll go back to celebrating each teeny tiny milestone he meets.

I'll celebrate that he made eye contact with me this morning to request an Elmo movie. Not with his words, but by using his sweet hands to guide me. I'll celebrate that every morning he greets me with the biggest "HIIIIIII!" I've ever heard (and also the sweetest Kentucky accent). I'll celebrate that he happily played for 30 minutes in the sensory swing with his OT. I'll celebrate that joyfully (or not so joyfully) bear hugs his little brother when he's near.

The Lord is still growing me through this process of knowing Owen and how to love, nurture and care for him. And I can fully accept that we don't have a "normal" life. It may not be normal in the sense of classroom parties and craft projects. But it's my normal and I wouldn't trade it for anything.

Owen is beyond special, and so much more perfect than I ever could have planned.

And you know what? I'll be helping plan the class Christmas Party with a big smile. :)

"I love you like the moon loves each shining star.
 I love all that you will be, and everything you are"
-How Do I Love You?



**For those of you who have been checking in on Owen this week, and more importantly, praying for him; thank you. Thank you, thank you from the bottom of my heart for constantly loving Owen and our family. Owen was quite sick, more sick than he would reveal, but his labs were clearly showing us a sick little boy. However, he has been fever free for over a day and is slowly coming back to his happy, busy bee little self! We avoided hospital admission (narrowly) but we are so thankful for the extra help (hello babysitter Ms. Amber!) and extra prayers this week.**

Linger Here

Back in action, here on the bloggy bandwagon! We've been a bit MIA lately...ya know livin the Florida life. Beaches, swimming, enjoying the 80* weather while our friends back home are getting chilly! ;)

Lots of new, exciting things are happening in the Daugherty Household! One, being Owen is finally liking school! I've been told by his teachers he is learning to appreciate their schedule and following along with their daily routine. We are seeing significant progress with his Speech therapist, Ms. Laura who Owen absolutely adores.

Ms. Laura has challenged and encouraged Owen so much in the few months she has been working with him. His eye contact is improving, his social interaction is teetering on amazing and he is excelling in play skills with peers! We are so, so thankful for Ms. Laura and how she has already fallen in love with our sweet man! (Can you really blame her?!)

Here are the two in action playing Barnyard Bingo, Owen's new favorite. :)

On the therapy front, Owen has lots of new things happening soon. Monday Owen will begin Occupational Therapy. This will hopefully help with his sensory struggles. During his OT evaluation it was discovered that in situations Owen is a "sensory avoider", but in others he is a "sensory seeker". We aren't really sure how or why the sensory issues develop, whether it be from the kidney related issues, hospital life or just the severe sickness from birth. Whatever the cause, we are blessed to be starting a new (intensive) therapy next week!

Also, we have a big evaluation coming up for Applied Behavior Analysis Therapy. Basically, this will hopefully help Owen develop coping strategies for situations when he feels uncomfortable, overloaded or stressed. This will correspond well with his OT sensory therapy. The most exciting thing about starting Owen's ABA Therapy is how God totally showed up in our situation. ABA Therapy is not covered by any insurance. Ever. And it's ridiculously expensive. Like over $200 per session. We applied for a scholarship to see if it would be something we could add to our monthly budget. A couple weeks passed and we were second guessing ourselves, wondering if we were making the right decision adding yet another appointment to our already busy weekly schedule. Then, I got a phone call. We qualified for the highest paid scholarship. That's right, 90% of each session is covered for us! Chills? Yes! I just love it when The Lord speaks so loudly and clearly to me. Another assurance of His provision over Owen's life.

Please be in prayer that we continue to seek The Lord fervently in decisions we are making for Owen. He is going to school twice a week and now has 4 weekly therapy sessions. It's very busy and new for us, but it is our prayer that early, intensive therapy will prove to be fundamental in excelling Owen's development.

Since our weeks are so very busy we like to play, play, play on the weekends! Abel started walking right after his first birthday. I should revise that, he started running after his first birthday. He has one speed: fast. He is a true beach babe and loves swimming in any body of water. He has absolutely no fear of anything and is the exact opposite of his brother. While Owen is most definitely a busy body, Abel puts him to shame. But I am loving every single minute! These boys bring me so much joy I think my heart may just burst at times. :)

 

We have been so blessed to find a church down here that has "blessed our socks off" each week. The worship gives me chills each week and I've been challenged in my walk with The Lord each time we attend. Not only are Michael and I enjoying our time to worship together, our children are being loved on and blessed by the best women around! They have opened their hearts (and literally their arms) to loving our, boys....even though they are usually less than thrilled about their time in the nursery! It is such a blessing to know that our children are being cared for, and the compassion and understanding we received when asking for extra help with Owen, or apologizing for Abel crying hysterically puts our minds at such ease. And just to see The Lord working in my life again, these women are leaders in the MOPs group I joined. So not only do my boys get to hang out with some cool, godly women- but I do too! :)

 

This past week at church we were encouraged to linger more fervently in The Lord's presence. It was a message I needed to hear. I pray that my children will grow up seeing me lingering in the presence of The Lord. That they will see me diligently pray without ceasing, for any and every need. And that my days will be filled with praise and worship, even during the most mundane tasks.

 

Thinking of this also makes me want to just linger here awhile. In this carefree, sticky, messy, loud, but full of fun life. I just don't wanna grow up. :) May I squeeze out every second of every minute I have of hugging, squeezing and tickling these sweet gifts that are growing entirely too fast.

 

 

 

 

"I wanna sit at your feet
Drink from the cup in your hand.
Lay back against you and breath, feel your heart beat
This love is so deep, it's more than I can stand.
I melt in your peace, it's overwhelming."

 

The More I Seek You- Kari Jobe