I hope everyone had a wonderful Christmas yesterday! I was able to go home for a few hours both on Christmas Eve Day and Christmas morning. We opened some gifts both days since we had all of our family exchange gifts from both sides of the family. We also were able to attend a Christmas Eve candlelight ceremony at Acts 2, which was very special since we usually are not in town on Christmas, and because this is our last Christmas in Oklahoma. Christ has used the people of this church to help us grow in our faith so much these past 6 years, and to help us through so many difficult times. We were running late (surprise) so we ended up in the front row. We let the kids each have their own candle too, so you can imagine what a spectacle we were! :) I am just thankful we were all able to celebrate Jesus' birth together. We, of course, wished Luke was with us, but the reality is that we wouldn't have taken him anyway with the crowd and his prematurity.
Highlights from the kids gifts for this year:
Eli got a Skylanders starter pack from Santa and lots of Skylander characters from family. He also got a drum set and some Lego sets that he has already put together! He also got Battleship, a science experiment set, and Whac-a-mole card game.
Drew got a sword from Santa because his from last year got broken. He also has recently become interested in trains, and got some Thomas trains and a small track. He has a couple new floor puzzles to do and a Lego Duplo set. Nana and Papa got him a new harmonica too, which he loves!
Jordan got a Baby Alive from Santa and loves her! She has asked for a doll "that pees and poops" for as long as I can remember! She has a high chair to put her and her two other new dolls in, thanks to Grandpa and GG. She also got a Tinkerbelle movie, a Barbie guitar, a hairstyling kit and a pillow pet night light.
Luke's gifts got opened by the big kids since they would have anyway! He got some clothes and fun toys, a name block like his siblings and a homemade blanket.
As far as Luke's progress, there is some, but not a lot to report since the last post. He is having trouble keeping his oxygen levels up, so they haven't been able to wean him from the ventilator any. They turned down his nitric oxide only to turn it back up yesterday, but turned it back down today. He is off the paralytic, so that is wonderful news! He is able to wiggle around and shows us his beautiful bright eyes once in awhile. He has at least one time each day when he really is awake, and he is agitated. I am usually able to soothe him with my singing (scary I know!) and soothing touch when he gets upset, but we usually have to give him a bolus of pain meds to calm him down from those big awake times.
Other changes include increasing his pulmonary hypertension medicine twice. They hope that with the increase of this medicine, that they can decrease his nitric oxide and get him off of it soon. They also ordered another echo of his heart, and this time, put in a cardio consult, so Dr Shaw will be by in the morning to see Luke. His X-ray looks better today than it has in a long time, and everyone say his lungs sound great, so I hope that these improvements will show clinically soon and he will show us that he is ready to start doing more breathing on his own.
I still stay here most of the time, and feel that I need to be here to be Luke's voice. With the holidays and being here for almost 2 weeks, we are seeing new staff who don't know Luke, and my presence and recollection has been useful a few times. He likes to keep teaching them that every kid is different! :) When he has a repetitive problem, I like to make sure we look at how it was addressed last time by a different doctor, nurse or therapist , so that we aren't always going back to square one. Also, the boy tends to act up every time I do leave! Stinker!
Thanks again to everyone for everything. We can't say that enough! We continue to try to be patient and open to the path we are chosen to take. Sometimes it is easier than others. I will try to post some Christmas pictures on here soon, but those of you on Facebook have already seen some. I forgot to mention that we got some snow! Just enough to cover the ground, but the kids had a blast in it nonetheless.
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