Sunday, August 21, 2011

Home Sweet Home

We finally made it home late Friday night. Traffic wasn't that great plus with that long of a trip we do have to stop and do a diaper change and take a break. Raygen gets so hot when she is in her car seat too long so she needs breaks. Yesterday we just caught up on some needed R&R at home. I know Raygen knows she is home. I think she enjoyed being back in her bed and watching her Sesame street, lol! We have started a bad thing with the tv but whatever makes Raygen happy we do. She had a really good night last night. I can see that she is starting to feel better each day which is a relief. I'm even more panic now after a cold then before, but I guess now we know what signs to watch for. For a cold that you or I wouldn't have noticed if we had it, sent Raygen to the hospital for 3 nights. So scary. I know that each day she will start to feel a little better and get back to herself but I know were only a few weeks from going back to the hospital. It will be strange to take Raygen to Children's instead of being taken there in an ambulance. So the plan is...... to see her regular cardio doc this week for a check up and then Dr Park (awesome cardio doc) and Dr Rubio (Rubio is the cath doc @ childrens and an awesome cardio doc) will decide and schedule Raygen's heart cath and G tube placement. Hopefully both procedures will be done in one visit and under one sedation. Then based on the Cath results will determine when we go forward with the Glenn, but they are thinking October most likely. I also have to schedule an ENT appointment within the next two weeks as well to have Raygen's vocal cords checked to see if they healed and if there is any possibility we can get rid of the trach soon. I think they have healed at least a little we do hear a cry once in awhile. So many things happening within the next few weeks. Zoie is also starting 2nd grade, she is getting so big so fast. Thank you for all your prayers and support we couldn't do it without them. Please continue to pray for Raygen she has so much coming up so fast she needs to be as strong and as big as possible and please pray for Zoie that the sencond grade is good for her and that she knows she is loved and important.