Ella has been doing amazing things lately. She has learned to balance on her belly button when lying on the floor and she is lifting her head up more and more. Joe and I have been working with her modified sitting, however, there have been some comments about Joe's legs from the last pictures so we are going to hold off sending anymore pictures from that angle. We had Ella's eye glasses ordered today and they should be in next week...we'll send lots of adorable pictures. She is still patched every day for about 2 hours and it still doesn't seem to bother her. We still work daily on her head and trunk control...but I am reminded daily that we are "knitting a sweater" and this too will make me stronger, at least in my relationship with Christ. I wonder every day why God picked me and why He would think I was strong enough to endure this...I guess He knows me a little better than I know myself. Ella is growing daily and is smiling and "talking" more. We are working on "mamamama" and "dadadada"....we aren't quite there, but she responds in her own way.
We go in tomorrow morning for Ella's EEG to check and see if she has had any seizure activity since the first 72 hours after she was born. If there is more seizures then there could potentially be more damage. I, somehow, feel disconnected from this test right now...not nervous or sure of anything...but kind of numb. I, also, have a doctors appointment tomorrow as a follow up for the lumps they found in my breasts.
Everyone seems to like my honesty when I talk about how I feel...ha, I just use this blog as therapy. I have started talking to some women who are mothers of children with problems a lot like Ella's...theirs are diagnosed, but we have an idea of what our diagnosis will be...more on that at a later date. It's nice to talk to people who have "slow" children. Ella isn't "normal" and she isn't really even "slow"...she has brain damage and her motor skills, eyes, and over all muscle tone are all affected and probably will forever be affected at some level. It's taken me almost 8 months now to be calm about that. I still cry, almost daily, but it's not because of what we do know, it's about what we don't know. A lot of my reasons for sadness are selfish...I don't want to have an infant forever...those are my fears. I have a tendency to be extreme and dramatic...I think I have those same reactions with Ella...it's an initial..."oh my goodness, how am I going to get through this"...some days I just wonder how I'm going to explain this all to her when she is older. She is so wonderful. She is so easy. She is so relaxed and "go with the flow". She eats well, sleeps wonderfully, and is on a great schedule. She laughs at all the right times and squeals right when we need to hear her make sweet noises. She works hard in therapy and works hard every day when we do her exercises. She is a miraculous and wonderful child. I just wish I could "fix" the things that might cause her to miss out on anything life has to offer. This too will take care of itself and God will give me the grace for these things...but sometimes I just get scared and wonder how it's all going to look a year from now.
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