Our days lately...
Wake up, get in a few minutes of snuggle time. Breakfast. Attempt to get work done while intercepting Evan's attempts of playing with toilet water, throwing toys in the garbage can, climbing the steps, locking himself in random rooms, climbing into cabinets, destroying tissue boxes etc. Lunch. Nap. More work interrupted by playing chase, swinging in the backyard, perfecting Evan's skill of finding his nose, more attempts of saving Evan from random destructive and/or unsanitary behaviors. Making dinner with Evan attached to a leg, or on my hip. Play time with Evan and daddy. Bedtime. Then repeat.
Pure joy. I am loving every minute because our Evan is home with us. No more pokes, beeping, blood draws, vital checks, tubes and IVs, other kids crying while trying to sleep. Our usual everyday stresses have never been so lovely. I told Derek this weekend, I'm just happy all of the time now. A huge weight has been lifted from us, and we are so thankful, and just so happy.
You would never know what Evan went through only a week ago. He's completely back to his normal self, it took him a few days to get used to his incision - he would
whimper when his shirt was off. It was heartbreaking wondering why - not sure if it was pain, a memory or just scary for him to look at. But as of yesterday, he's okay with it. He's also off of all of his pain
meds, he came home on Motrin and
Tylenol, with harder stuff available but never needed. We go visit his local cardiologist, Dr.
Loker, this Thursday, and we'll see how everything looks. He had a small clot that formed from his central line in his right atrium - he's been on aspirin for it, so it hopefully is beginning to
dissolve.
We are so appreciative of
everyone's support and prayers. Evan continues to defy the odds in his recoveries from surgeries. We know that this was not the final chapter of Evan's
Shone's Complex. It will be a lifelong ordeal that we will continue to keep a close eye on so he gets the attention it needs. We hope that we don't have another surgery for 3-5 years, as his surgeon predicts. Next year, we're dreaming of a real vacation.
We do know that Evan continues to not only be looked a
fter by some of the best pediatric cardiologists, but by the Great Physician. It is through Him that we draw our comfort, and release our anxiety over Evan. He has carried us through these stressful last 14 months, and we continue to trust in Him and His plans. As I've said before, all of these surgeries are in God's plan. These are not imperfections of Evan's heart-they are a piece of God's perfect plan for Evan's life.
"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
This journey is not only Evan's journey, but continues to have a profound affect on both Derek and myself. In our faith. In our marriage. In so many aspects of our lives.
We'll continue to post updates on here of Evan's day to day, and continue to pray continually for his good health, and strength as he grows. Unfortunately, my camera is giving me fits and won't upload photos to my computer, so don't have any new pictures to post. But look back later this week, and I'll have a post loaded with new pictures (even a video if I can make it work!)
Ready to head home...
On our way...
1st Haircut.
During.
After.
Playing with Carter.
Surveying dinner options.
Fascinated by the squirrel.
Cutest little dragon I know.
Evan's friend, Jack. Lots of Halloween kisses between them!
Playing with cousins Anna and Rachel
I sometimes fondly remember when meals consisted of just a bottle. 
I am!
Evan continues to do well. Last night I stayed his room with him. A bit of excitement early on...around midnight, he threw up some really curdled milk, then while flailing afterwards, pulled his 2nd IV of the day out. It bled a lot, and at first glance, I thought it was his chest tube... a little chaos followed and we realized it was just the IV. About scared me to death though (and a couple of nurses too I think...) So, he had his 2nd linen change, then a 3rd when at the end he peed over everything, and cashed out for the night. He did great, no oxygen needed all night long!
and he's now resting with a bottle and Baby Einstein, 
He's very relaxed today and much more with it. Ate some Cheerios, gave us some claps, high fives and even a 'so big'.
We're so thankful for his continued good health, and fast healing while here. Please continue praying for continued healing so we can get out little boy home!!
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