1st Day Home...Holy Moly!

We came home to a house filled with love and surprises. Not only did our friends take down our Christmas decorations, but they filled our home with hearts and Valentine's day love. There were handmade cards from Oliver's classmates and church friends, dinner, cake, wine, gift cards, and surprises around every corner. Our favorite is a handmade heart cut out that says "fax me"...LOL!

Home Sweet Home

We felt so loved and wish we could thank every person...but we're not even sure who you all are...but we so deeply appreciate you. You've made us smile and our hearts feel a bit lighter in the midst of such sadness.

Last night we arrived home at 6:00 and spent the night trying to get organized, unpack the TONS of boxes of medical supplies we received, and get Oliver into his hospital bed that was delivered yesterday. We were so stressed trying to juggle it all, but feel a little better today. Oliver slept for 8 hours and we of course have never, ever, ever been so thankful for our own perfect bed. I thought I'd melt when I got into our bed, with our sound machine and yummy Downy lavender scented sheets. Sigh :-)

Today was incredibly busy and stressful. Together it took Andrew and I from 6-9 to get his meds, cath him, feed him (food and g-tube) and dress him. After all that we were both working the phones until 5:00 trying to handle all the new prescriptions, medical supplies, follow-up appointments (we have 9 in the next 35 days), discussing things with all our social workers/case mangers, and updating our nurses. Our parents have been helpful, with running errands (hello CVS and chickfila) and folding the mounds and mounds of laundry.

Lots of love and lots of work ahead of us too!

Oliver had a follow up appointment with his pediatrician, Hoke Pollock today. We think he is an incredible physician; he never rushes us out the door and is just an outstanding human being. We are so thankful for his careful attention to our complicated boy! Ollie got his sutures out and the g-tube site looks good. We talked to Dr. Pollock about our concerns about dehydration and Oliver's ongoing pain (evidence by his crying and whimpering). We are going to weigh him everyday...he is down to 56.8 lbs (from 68) so we are aggressively trying to get him to pack on the pounds. The cake and chickfila should help!

There are so many moving parts it is hard to even think straight.  The to-do list is still long and overwhelming, but we are just tackling it line by line. I take my job as the CEO of Oliver, Inc really seriously. You should see my spreadsheets and training manual for our nurses. I am sure as we settle in we'll get our heads around this and get systems in place. I had hoped to make it to my office today, but I think that was a bit aggressive (imagine that). I miss my other CEO job so much, and especially my beloved work family.

Asleep on the swing. 73 degrees and sunny...perfect Wilmington day!

We've had lots of tear filled calls with our friends and family. To be honest, we are all getting choked up at times. There is real emotional pain and no easy path to take it away.

But, my dear friend Jen Yngve reminded me of this line from a CS Lewis letter:

"We must, if it so happens, give our lives for others: but even while we're doing it, I think we're meant to enjoy Our Lord and, in Him, our friends, our food, our sleep, our jokes, and the birds song and the frosty sunrise." 

So Andrew and I are trying to live that kind of life. A life given to another...our only son. A rare child who has been sent to all of us to teach us and shape us. And as we give our lives for his we fight for our own joy. We keep trying to point each other to the sunrises. Giving each other gentle reminders to savor the sweetness in a glass of wine or the giggles of a toddler doing a baby bottle flip on Youtube (if you want to smile just check it out).

He has my heart!