Whew! What a happy day with lots of visitors. But the best part was watching William just be a kid again with his best buddies. It was magic. Simply magic. Of course, most of the interactions were video game centered, but I couldn't be happier because he lit up to have his peers around him. Yeah, even 8 year old boys get bored with Mom and Dad. Go figure!
William was surprised by his baseball coaches and one of his teammates. They presented him the last game ball, signed by all his teammates. He loves it. The team picture with all his buddies in a goofy pose brought laughter. His laughter is sweeter music to my ears now. He also received several gifts from team member families that made him smile. And a huge thank you to Laura for an amazing team slide show DVD. Incredible and what a treasure.
I will try to post pictures later since it's my night to sleep at home and the camera card is at the hospital. Ryan is on hospital duty.
William wants to post again, so stay tuned. He was just too tired after today.
This afternoon was spent as a family. It was awesome to all be together for the first time since this journey began. We spent some time outside and Ryan and I had time to give hugs and kisses and just hold each of our sweet little boys. They are doing fantastic and got to see William's scar and Broviac. It will be interesting to see how the discussions evolve with them as we begin the juggling act of all our evolving responsibilities as parents.
William has lost a lot of weight and is quite skinny and weak. His appetite is slowly returning, but it is still a struggle when he gets so tired. His big moment was being able to be disconnected from his IV to walk outside with us for awhile. He was nervous because his balance is off, but he did great. He needed constant assistance and moved at a very slow pace, but his coloring improved with the fresh air. It is strange to think one week ago Ryan and I had a healthy, active child and now he is so weak he can hardly walk and his appearance is almost skeletal at times.
Tomorrow we anticipate more pathology results, but if it doesn't happen, we won't be surprised. I beginning to feel like a broken record with pathology results and updates. We're always optimistic, but lately it helps to sometimes be a little realistic.
I have 3 minutes to make my bedtime goal. It's an early morning tomorrow to try to make it back to the hospital before doctor rounds begin.
hi william,it's kinsey. I hope you had a good night sleep. I just wanted to let you know my family is praying for you.When you're feeling up to it i'd like to come and see you. i am very familiar with the playroom because i have a family friend who spent a lot of time there.
ReplyDeletejust remember God is always with you.
your friend ,kinsey
R&j - keep hanging in there! we think with all this technology dr.s are just lazy or something. Why can't they just look at the scan or reports and just know & fix it already!!! Unfortunatly - after many years w/ chey and they STILL can't make a diagnosis and "fix it" I can only offer you this... Patience makes the heart grow stronger.
ReplyDeleteWe love you and wish we were closer. Sending lots of air mail hugs your way!!!!!
love you all so much! we're praying for you and thinking of you constantly... i love the blog, thanks for sharing everything. sedning big huge hugs your way!!
ReplyDeletexoox
ps- when your 4 younger boys come over to our house on friday - my kids LOVED them and we had an absolute blast. i think rachie has a "cousin crush" on clark and can't wait to see him in balboa :)