Jack had a restful night last night. The oxygen he is on has been turned down to safer levels (for now) and when he sleeps, his breathing stabilizes. A good night’s sleep for him is very important, and he actually seems to have gotten one at last (perhaps because his dad was with him all night, never stirring from his bedside). Jack still needs plenty of interventions and suctioning to keep his airways and lungs as clear as possible, but it’s Monday, and we’ve made it. I’ll be updating throughout the day today as (hopefully) we will have a diagnosis very soon, and a plan soon after that.
I want to write a little bit about Jack’s brother, Sam this morning. I think it’s important to introduce you all to him, since he is one of the most important members of Bounce Back Jack’s team.
While Jack has always been our more timid and quiet boy, Sam is outgoing and as happy-go-lucky as you can imagine. Here’s a great picture showing that:
Where Jack prefers routine, Sam is flexible. He is happy to have lots of caretakers (though he misses Mom and Dad), and to show off his crawling moves and his fancy new teeth to just about anyone. His favorite food is Everything with a side of Everything. He’s the most physical little guy you can imagine- just loves to move. His favorite thing in the world is splashing in the bath. He is (and always has been) Mr. Independent. I truly believe that Sam was given his sunny and easy-going nature to help shield him from the chaos swirling around him right now. It’s his way of helping Jack.
My truly amazing mom (the boys’ Nana) has been living with us and caring for the kids since they were born. Right now, she is looking after Sam for us every day, and trying to provide him with as much normality as possible. She’s doing an unbelievable job, despite what she is going through as a grandmother on this difficult journey. Words can’t express just how amazing a Nana she is. This is Mom and Jack, taken just before Jack went to the hospital:
Yesterday, Sam had his first visit to Nemours. We are all trying to find ways to normalize the hospital for him, since he may be spending a lot of time here in the coming months. Though he cannot come up to see Jack, he is able to go to the cafeteria, so we brought him there and his Nana got him a balloon (a first!). He smushed a french-fry in his hands, got a chance to see Daddy, and seemed rather pleased with the whole experience.
In short, Sam is doing just fine, thanks to my mom, who stands at the head of an army of people who are standing by to help. Thanks, everyone!
As a PS…. Several people are asking about donations. I thank you all from the bottom of my heart. While we are doing fine financially so far, if you feel that you would like to make a donation on Jack’s behalf, the best thing would be to donate to Nemours. This place is amazing, and the people here are doing unbelievable work every day for families in very dark places.
Stay tuned… more updates to follow later today.