Now that Holden is getting stronger, I am finally ready to put myself back on the list. While I won't give you all my excuses for why I haven't done it before now, I can only say that Holden was my main priority the past 18+ months.Seeing Monkey fight for his health has inspired me to be the best I can be: body, mind and spirit!! In a strange way I feel like we've been given a second chance. I know Holden is not out of the woods yet, but he is certainly going in the right direction. And by achieving my personal best, I will hopefully pass along great values, practices, etc to Holden.
I am also considering writing a book. Yes, I know how crazy that sounds. It is a thought put in my head, that no matter how hard I try to ignore it, it keeps coming back. Some may say it is a message I can't ignore. The title will be "Holden Faith" and the purpose of the book will be to raise aware of pulmonary vein stenosis and potentially raise some money for families in need who have a child with PVS. The disease is extremely rare, so there is not a lot of incentive for research. As more doctors and patients learn about it, doctors think the # of children diagnosed will increase (thus increasing the need/opportunity for research). I know the chances of getting the book published and people actually buying it is a long shot, but I figure there is a reason I am suppose to go down this path! So now, my challenge is to find time to work on it! When I pray about it, I hear a voice telling me that the book is practically writing itself. Of course that gets a laugh out of me, but I understand what that means. Certainly Holden's story has had many chapters. And hopefully when put in writing we can inspire others and help raise awareness for PVS.
As for Monkey he is doing great. We're all enjoying the time (4-5 hours a day) he's off oxygen. I think he likes his new found freedom as he is now exploring every room in the house. We spot check his sats when off the O2 and his numbers have remained in the mid nineties which is great (obviously 100 being what we strive for). He is so close to walking on his own. He recently began standing up and taking a couple steps without holding onto anything. His eating improves daily. He's now eating 3 meals a day and 1-2 snacks. We met with a nutritionist today to ensure he's getting the right about of calories and for Mommy to get some suggestions for some high calorie foods to incorporate into his meals, so we can soon get him completely off the feeding pump. If I can convince him to drink his formula out of a sippy cup (instead of juice), we would not need to do one bolus feed at night when he goes to bed. I suspect he'll get there before we know it!! He is now talking up a storm. He is saying Dada, Moma, and a whole bunch of other words that we can't figure out yet! We think he's saying dogdog, but not sure. He also seems to say GaGa around his Grandmas.
So lots of positive energy around here for change. And change for the better. I've been living day to day for a long time. And now, I am appreciating each day, but letting myself get excited about tomorrow.
