I am happy to report that we are all feeling much better! I am extremely happy to be able to hold, snuggle and love on my little boy again...he's pretty happy about it, too! Poor little thing did not understand that I was keeping my distance to help keep him healthy.
Sweet Drake has been working hard in his therapies and he has adjusted well to having substitute nurses. He is definitely most happy when his regular nurses are here, but he was willing to give some newbies a chance. I am always hesitant of new nurses coming in to work with Drake. I know that I need to work on my trust issues when it come to our little boy. It's hard! I know him and his regular nurses know him. We understand his likes and dislikes. We know his cries and how to make him smile. We understand his quirks and how to trouble shoot if something with him goes awry without panicking. Drake understands so much about his surroundings and what goes on around him. Lisa and I were just talking about this today. He isn't able to fully communicate with us, but we can see glimpses all the time when he smirks, turns his eyes in certain directions, giggles, kicks or smiles. We know he understands!
I have said before that our little Kennedy has patience beyond her years. At 2.5 years old, she completely understands having to wait if she wants something while we are working with Drake or in the middle of trach care. With a quiet, "ok" she patiently stands back and waits her turn. While we administer her breathing treatments every morning and evening, she plays with a toy, iPad or watches a cartoon. Now that her hair has grown considerably, she even sits patiently allowing Lisa to give her some beautiful braids!
I received two separate messages this week from other parents of children with special needs thanking us for sharing our journey. Both of these parents are just beginning their new path with their little angels. We are thankful that sharing our story is providing guidance and hope for others. I can not put into words the feelings and emotions that consume you as a parent when you receive the devastating blow of life limiting diagnosis. It is overwhelming to take in and digest. Then, you are ready to move forward and create the best life possible for your child. Searching high and low for resources, information, and others who have walked your path (or a similar one) paving the way in uncharted territory.