Merry Christmas! I can't believe that this time last year we were celebrating the holidays with our families at home not knowing what the year ahead would bring. As I sit her at Childrens with my husband and Raygen I can't help but be thankful. Yes, I miss Zoie more then you could imagine but I am still the mother to two wonderful little girls. My heart aches for all families who lost a child and the reality of that surrounds you here. I was able to go home this morning and be there when Zoie woke up so I got to see all the wonderful things Santa brought her and all the wonderful 8 year old expressions with each and every gift. I must say her favorite was her pink Nintendo DS. This holiday more then any other I understand and appreciate God's love for us. He has blessed my family beyond anything I could imagine this year and he continues to do so. I know that so many people have found God through Raygen. You can not have any doubt in him when you look into her beautiful eyes. She is truly our miracle. I pray for all the families in the hospital this year and hope that they also find peace and know that better days are to come to them and especially their children. I know next Christmas we will make extra special for our girls.
So I know your all needing a Raygen update. She is doing a little better. We went back up on her pain meds to rule out withdrawal and came down a little on her feeds. She is on oxygen and her o2 sats are still in the 70 to 75 range and drop down in the 60's fast when she is upset. The doctors say we just have to give her time but I can't help but constantly worry that something is wrong. I always heard sats after the Glenn would be better or at least the same but in Raygen's case they seem a little lower. She is also on blood pressure medicine which I think makes her cough alot but a nurse practitioner told me that rarely is a side effect, lol! I just have to laugh at that because if you know Raygen's story if there is a "rare" in anything we usually have it, lol! I get so frustrated with doctors here. Sometimes I want to scream. We are still on the wait and see game and just see how she does. Maybe we will just go home with oxygen and hopefully be able to wean her off but I have no idea. I can sit here for hours and run all types of situations through my head to figure out whats going on but the truth is I'm no doctor but what else can a mom do.
Please continue to pray for Raygen and all the families here at Childrens. I hope you all have a wonderful Christmas! God Bless you all!