Where do I start?
It is amazing how different this stay has been. Many people who have seen Colbey Raye in the hospital or seen pictures this time around have been more saddened by her appearance and felt sorry for her. I know she looks so much worse and it is hard to see her puffy swollen face and it is so hard for me not to be able to pick her up and love on her (mainly because she is sore and cries when I try) but this has been the most relaxed and comfortable stay in the hospital I’ve ever experienced. She is in more pain due to the surgery, she is sore, swollen and uncomfortable but she is not seizing! The affects her seizures have on her, making her tired, confused, causing her to stop breathing and just purely wiping her out is much harder for me to see than her in a recovery state. I feel there is a positive reason for being in the hospital, a reason to be thankful for our stay and a hope to take her home seizure free. We have never been discharged from the Children’s hospital with a seizure free baby! And this time we will be (most likely!) We are still keeping an extremely close eye on her but I cannot explain the hope we feel and the relief we feel from this surgery. This is the first hospital stay we have had where I’m not tense and constantly staring in Colbey Raye’s direction. I’ve been able to get a few good chunks of sleep in and have been able to relax a little bit.
I know right now she looks worse, but so far she is doing so much better than before! She is moving both arms and legs, she has been holding her sippy cup all on her own 😊, and is looking around. She is still sleeping much more than she is awake, she isn’t her happy smiling self and has not started eating on her usual schedule but she is improving daily. If she continues to progress like she has been we will most likely be able to bring her home on Saturday. We just want to see her playing and awake more than she has been, and also her eating habits to be a little more like normal.
Dr. Ojemann is a little concerned about her food intake, and we are going to start doing a calorie count on her to see if she is getting enough but other than that her amount of swelling looks normal and she does not seem to be in an extreme amount of pain, just a little uncomfortable and sore. Over all we are happy with her recovery this far!
Where do I start?