Day 43

God is Good All The Time comes to my mind right now. Not just because things are going well, but I mean all the time.

Karly was discharged yesterday, and we moved into the Woodmont House which is sorta like the Children's Inn, but just off campus. It only houses 5 families at full capacity. It is very nice, quiet, and more like a family atmosphere. It is close to downtown and offers more adult type things for us. We will formally meet with a manager next week to find out all that is available. Sorry for not posting on the spot, but yesterday was non-stop with moving out of the Inn and out of the hospital by myself as Zach was sleeping and Karly couldn't help. Last night we went on a movie trip to the RIO Gaithersburg where we saw The Hundred-Foot Journey. We all totally enjoyed it.

We had to go to the hospital again today, then every Monday and Thursday for labs and check-ups. Her Creatinine is still unsettling reaching an all-time high since last weekend. Fortunately, it hasn't gone up any more this week...still just holding. Please pray that this number will return to normal and all labs stay normal by God's healing touch. The best guess is the Tacrolimus..it is a horrible drug. The nurses would hang it in IV form wearing a special blue gown and gloves and have another nurse confirm the drug. When Karly started taking it by mouth she had to chuckle because the nurse gave her a pair of gloves to wear to take it. Karly kinda just looked at her and said, "I'm putting it in my mouth." Oh, the stories.

I am so thankful for the loaner car. It has been invaluable over the move and the trips to and from the hospital. We feel so free and able to just go do whatever comes to Karly's mind. The Woodmont has a garage, and I'm getting the feel of the land and vehicle.

Zach gets to return to normal days and nights. Karly and Zach are playing in the recreation/fitness room as I type. We were sad to see the family go Tuesday morning, but it was the boost we needed at that time. This week has been busy, and our friend, Sara Coggins, is making a pit stop here on Saturday to visit us for about 5 days. Anyone who knows Sara knows she causes trouble in her wake.

We were blessed on Wednesday to be able share a bit of our story in an interview at the Children's Inn. We shared how the Inn has helped our family through 3 really tough long spells and accommodated the clan during holidays, how it has evolved to keep up with needed changes, and grown in programs that help families. When a family shows up at the Inn, they can truly know that they have a place to rest and eat. Caregivers and patients alike stay well. When you have a sick person in the family, it affects the entire family, and the Inn is good at caring for the whole family. They will be celebrating 25 years and are putting together a video to raise awareness, thank their donors, and hopefully get more donors in showing how this "Place like Home" is invaluable. We have been going to NIH since February 2001. The Children's Inn has always been a place to relax, eat, meet others, and give kids a place to play and be kids after the long, often difficult days at the hospital. It has created so many programs over the years that help kids express themselves through art, learn other skills, keep up with school, go on cultural field trips, visit museums, and the list goes on.

We are all thankful for your prayers. I've seen patients go home after 60 some days and as much as 100 some days. Pray that we get the lesser, but stay content with the process. God Is Good All The Time!
Love,
Mom