Tuesday, December 24, 2013

Merry Christmas from the Willis Family!

I hope you are all enjoying the holidays with your family! I'm sitting in my kitchen, cookies baking in the oven, Jensen taking a nap, and my husband in the next room...we are abundantly blessed! We are all healthy and all under one roof, we couldn't ask for more than that.

Things have been going so well, there hasn't been much to update on until this past week. Jensen is still doing great but we have noticed he's slowing down a little. He's more winded from his normal activities, even bending down to pick up a toy causes him to breath heavily. Of course he is still running everywhere, playing like a madman & always being silly. We are just starting to see that we are getting close to needing his Fontan. Its a reality check after many months of relative normal. 

He had an echo and as per usual with a squirmy toddler, not all of the arteries were visible. His left pulmonary artery and aortic arch have always been areas of concern and of course, we weren't able to visualize those. They were able to see that one of his valves that was had a mild leak before now has a mild-moderate leak. Its something we will be keeping an eye on. Our local team is sending the results to our Philly team and we are going to see what they want to do. Our local cardio recommended a cath so that we could go ahead and get an idea of where he stands leading up to the Fontan. This would also give them an opportunity to stent/open any narrow areas (which we suspect he has).

To give you an idea of how he's doing, over the summer Jensen was satting around 85 consistently (and often times higher). Now he stays around low 80s but has been dipping into the 70s more frequently. There is no reason to rush, he's still doing well overall. We are just getting close to that time where we start planning timelines, looking at plane tickets, getting referrals...ugh. Its all so daunting even though we have done this so many times.

 Even with the Fontan looming and Jensen's blue lips staring us in the face, we aren't worrying about that right now. We are choosing to make this Christmas amazing for Jensen. Of course last year he was still too young to understand anything that was going on. This year he's still a little young to fully understand Christmas but he does love Christmas lights, our tree, unwrapping presents, etc. We are so excited to make this year fun for him =)
We have had our Christmas lights up since before Thanksgiving and we have a small army of light-up Christmas characters standing guard at our house. He waves at them through the window every day. He tries to sneak and unwrap presents. He waves at his Thomas wrapping paper. He is so much fun to watch! Everything is so new and so exciting for him, which of course, makes us super excited about celebrating Christmas together.

 We want to thank you all for another year of support & prayers. We are so blessed to have Jensen here with us this Christmas. I ask that you please pray for those heart families who are missing their warriors during the holidays. Also, please remember those families who are spending the holidays in the hospital. We love you all and wish you a very MERRY CHRISTMAS!