Friday, February 24, 2012

4 years


My dearest Nathan,

You wrapped one arm around my neck and placed your opposite hand in mine as we danced around the kitchen to one of your favorite songs. The smile on your face as we twirled to the music is branded in my memory, right along with your infectious laughter each time I would dip your head back and spin you around. The grip of your tiny fingers around my hand was fierce, and you pulled me closer to you each time we would turn quickly, round and round and round until we were too dizzy to stand anymore.

Sitting against the wall and trying to regain our sense of balance, you leaned your precious head against my arm and said "you're my best friend." I plopped you in my lap, wrapped my arms around your tiny body and kissed the end of your little button nose...and shot a prayerful plea to Heaven: "Lord, let me dance with him at his wedding. Please."

My dear son, 4 years. I can hardly believe it. You have grown and changed so much over the past few months, and I am loving this stage of development in your life. You are just so much fun to be around. You have such a sweet, fun and easygoing personality, and it is always such a joy to spend personal time understanding that little mind of yours.

This was a whirlwind of a year with countless ups and downs. Every year when I sit down to write this letter to you, I think back on the medical odyssey we encountered together over the last 12 months and am always a bit fearful about what you will endure in the coming year. Regardless of the unpredictability of what this coming year will hold, I know one thing...I know nothing will deter you from living life as joyfully and happily as you can. You continue to face every single trial and fearful event with more courage and grace than I could have ever imagined was possible. The Lord has truly blessed you with the courage of a warrior, my brave boy.

You are a light, my son. People are drawn to your winsome personality and loving gestures. They see wisdom when they look into your eyes, and you speak to their heart when you flash your mini dimples with a mischievous smile. I love witnessing how God uses you to touch the lives of others.

My Nafey boy. My little love. Despite all the hardships, I am so thankful that God chose us to be your parents...for we have learned so much about love, life, service, thankfulness, perspective, and joy through the example of your precious life. You are a remarkable child, my son. I love you with all my heart. Happy 4th Birthday, Nathan Andrew.

Monday, February 20, 2012

A hiccup


Nate has been doing so well lately. The past few months have been the healthiest he has ever had, and it has been amazing to witness the positive transformations happening in his body. It has been during this time that we have talked of exciting aspirations we have for the little guy...t-ball, school, etc. This time of growth and incredible health for our son has given us a sense of great hope that he may indeed have a somewhat normal life as he gets older.

It has been during the past few months that we have forgotten a lot of the negative impacts mito has on his little body. Since it has been so long since he has had a significant illness, we have somewhat forgotten how his body is affected by the added stress of fighting off sickness.
After a few days of a mild runny nose and cough, Nate's motility started to really decline. His GI stimulator has been working great, but we have always known that he more than likely would still have problems when he was sick. Once his motility started to decrease even more through the week, the little guy started to vomit periodically and complain of a lot of belly pain. He came down with a fever a couple of nights ago, and while zofran, motrin and continuous slow-running pedialyte through his tube were helping, he was still declining.

He spent most of the day yesterday just laying on the couch or sleeping, and his urine output was significantly decreased. Once the afternoon rolled around and he still wasn't perking up, we knew he needed to head in to the hospital for fluids to help get him over this hump. After a few hours of D10 and some IV zofran, we headed home, hoping this intervention would help his body tolerate this illness quite a bit better.
He's done a lot better today...still has a low grade fever and a really nasty sounding cough and high heart rate, but his urine output has been much, much better and he's not looking as pale and puny. He's still having a lot of belly pain that is exacerbated when we try to turn up his fluids and by him trying to eat a little dry cereal here and there, but zofran and motrin have made it manageable, and he hasn't vomited since early Sunday morning. He has lost an entire pound the past few days. I hate seeing how quickly he loses weight in relation to how long it takes him to put it on.

It is always disheartening when he gets sick...seeing how differently he responds to these minor illnesses than the girls, seeing how much longer it takes him to get over it, and worrying about what is happening inside his cells during these times always weigh heavy on my mind. Since it has been a while since we have gone through this, it seems to have hit me harder with sadness this time around. I want so badly for him to live a normal life. Sometimes that wish seems so attainable. And then sometimes it doesn't.

Wednesday, February 15, 2012

More Hawaii pics



Saturday, February 11, 2012

Hawaii 2012


The trip was incredible...simply incredible. There is really no way else to describe it. In fact, there is no real way to describe the beauty of the island in words...pictures are the closest we can come, and they don't get nearly close enough to the true beauty of it all. It was truly a remarkable and rejuvenating time, and I look forward to the year that we are able to go to one of these islands again (minus the travel time it takes to get there). It has been so good to see the kids again after being away from them for a full week, but I do miss the island as well. I just wish I could have shown them the beauty of this place in person.

Wednesday, February 1, 2012

Sea World


In the midst of trying to prepare for our upcoming trip to Hawaii, I have totally neglected updating the blog. Here are some pictures from the trip to Sea World we took a couple of weeks ago for Emma's birthday...look for pictures from Hawaii in a couple of weeks. Until then...



















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