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Thursday, April 3, 2014

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!

1 comment:

  1. What a beautiful beautiful story. Thank you for sharing this. A good reminder of just how precious life is.

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