back home

Today was Naysa's first full day back home since surgery. It was so good to hold her without a million cords and IV tubes in the way. I feel a sense of purpose again now that she's back home and it was sorely missed. I am still so afraid of her head! She's missing so much skull and it's more obvious now that the fluid isn't pushing her head out. I'm not sure how I feel about waiting so long for a bone graft, especially if she is going to be rolling over and crawling! We go see Dr. Levy next week so I will see what he has to say about it. She had lots of tummy time today and was actually able to move her head! It's kind of like she is a newborn all over again in that aspect, but we will get there. She's doing so well and I am so proud and thankful. I pray she stays infection free over the next month, we don't need any more hospital visits just yet! She doesn't seem to be in too much pain but I gave her tylenol before bed just in case since she was a little whiney. Her next PT appointment isn't until the 19th so I'm pretty anxious about that. Hopefully now she can catch up and learn to keep her head up and move it so she won't be at risk for SIDS so long...I am constantly worried about that and even though she is hooked up to an apnea monitor at night I check her breathing everytime I get up. sigh....