We are home, I am sitting outside on our deck with the cool breeze refreshing me and the little wrens dancing around the backyard and the nervous young Rosella attempting to gain the courage to land on the bird feeder while I sit on the deck occasionally glancing up and watching him. So we are home, it is different, it is strange, no definable routine, it must be created again, I even feel like I am in a bit of a blur or mist, waiting for someone to wake me from this very strange dream. But is it true, Faith doesn't have her NG tube and it is wonderful to see her free from it. We are home and she still doesn't have it. Yay! On approaching our street she said home a couple of times, the first words we have heard her speak in days. Then while putting Play School on for her to watch, she giggles and smiles, though only fleeting, I can see more life coming back into her body.
It still isn't easy though, Faith has no real sleep patterns and wakes around 3:30am - 4am because she is hungry, this morning she only had about 90mls of the blended diet and we tried putting her back to bed and I could see she wanted to sleep but I think she was developing a temperature again, a morning thing, and I was right, it didn't get to 38degrees but was high enough to make her feel unwell and grunt a lot. It dropped very quickly when I put a damp washer on her face. She ate more blended diet later totaling about 150mls in the morning. But that seemed to be it, she didn't want anything, no fresh juice of blended diet, her next decent amount wasn't until 4pm when she only had 50mls. I guess it is to be expected since yesterday she had nearly 800mls so maybe she isn't as hungry. We went to the Spina Bifida Hydrocephalus Association Christmas Party and it tired her out. She met Santa for the first time and didn't cry and got a lovely gift of some books and a funky bath toy.
We didn't stay long and headed back home and I am very glad to be home but will miss the face to face contact with Faith's speech pathologist. We are going to talk every day and I will send her texts to keep her updated and we can brainstorm any problems and that is wonderful and very helpful. Her support is what has kept us going when we didn't know how to proceed. But back to now and that Faith hasn't wanted anymore food. We have tried different cups again but she shakes her head and if pushed brings her arm to stop us. I must keep reminding myself that Faith is in charge and she has to choose to eat and drink not be forced. It is just so hard when I know she must be hungry and needing food. But I have to be very patient and push on towards the end goal. So my plan is to create a new food friendly zone and a cup station for Faith so she can pick and see encouraing and inspiring pictures and words around. It also encourages me greatly to see quotes and encouragement around.
I don't know what tonight holds, I am hoping Faith will wake so I can give her some more food but hoping she can find rest to gain more strength and gain weight but I must not rush this is only day 4, though I feel months and months have past.