Monday, September 16th
Avery had a much more restful night last night. We were up twice to go to the bathroom, but otherwise she slept peacefully. She is not much of a morning person, so she kept to herself and ignored pretty much everyone all morning. She had her vitals taken with a blanket over her head because you know "If I can't see you, then you can't see me."
A volunteer came by and played games with her which really lifted her spirits. She even decided to go to Sunshine school here in the unit and stayed for about an hour. She seemed to enjoy getting out and interacting with the other little boy who was there and close to her age.
An hour after school ended, we joined the Camp Smile A Mile activity, and she made buttons for the entire family. She had a lot of fun, and it did my heart good to see her out and about a little. We even walked a couple of half laps around the unit.
As fun as the morning activities were , they completely wore her out. She spent the rest of the afternoon asleep on the couch. She perked up some when Shon stopped by after work eager to share what she had done today and our plans for tomorrow.
She's still not eating or drinking well and ended the day with taking in half of a bread stick, a few pieces of Chex Mix, and a few sips of water. She has dropped a little over a kg since we were admitted last week, bringing her down to about 41.5lbs.
We were hoping to get to go home tomorrow, but her Methotrexate levels looks like we will be here a couple more days. We are both eager to get home to Shon and the big girls, sleep in our own beds, and not being attached to a pole everywhere she goes.
Our prayer requests remain the same as the previous few days, so I'd like to point out a few blessings:
- We live 20 miles away from one of the best Children's Hospital in the US - There are so many families here who have to travel from far away and have extended time away from their parent and siblings at home
- An amazing support system of family, friends, coworkers, complete strangers, and prayer warriors
- Flexibility in our jobs that allow us to focus on the most important thing - our daughter's health
- Amazing insurance coverage which removes much of the financial burden of a catastrophic illness. Many families are not so fortunate and have unneeded added stress worrying about coverage and payments
Sending prayers and peace with hope you get to go home soon! I bet she will be more herself then and able to eat and rest better! Hospitals are not fun even as a visitor! Blessings to you and the family, and sending love to you all!
Lori Beth,
We are praying for you all!
The Weldons and Mosleys
Continued prayers coming from Santa Rosa Beach, FL. You all will continue to be lifted up in our thoughts and prayers.
You and your family are my heroes. Daily prayers for peace, strength and healing🙏🏻
So proud of you for a lot of things, but being able to find a few bright spots right now is what I’m most proud of. Glad to know she’s getting stronger. Will continue to pray for all of you.