Two weeks ago we visited the hospital and saw our spinal surgeon and a spinal doctor. We only had mikey with us and he wasn't impressed with the surgeon or her assistant. He just sat there and hoped they wouldn't go near him. Its like he knows who she is. She did say before his surgery that children who go under her knife don't like her, but I think it has more to do with the fact that she doesn't know how to bond with children. She didnt even get up from her chair to play with him. She did touch his feet though and said how big they were and commented ' oh your going to be tall, aren't you?' From that moment on she lost the focus of us. We couldnt believe she said that. She started talking about the surgery and I couldn't help but open my mouth and say 'You do realise don't you that the babies are going to be dwarfs?' She just explained that it was just a passing comment. I don't like her very much if she hasn't the decency to educate herself about their disease before making sensitive comments.
She went on to explain that in 2011 Michael would have to have his spine fused and Andrew will have his spine cut away to make room for the spinal cord. It wasn't what I went there to hear. Thinking of my babies stuck in a halo is pretty horrible not only for them but for us too....I don't know how we are going to manage them and with us both working we really need the support of family. Don't forget we have two other children who need our love and care as well.
After reading a hurtful email from my twin sister, I started getting down for the first time since the pregnancy. I stopped eating and I'm still struggling to eat a banana....for lunch. I don't think Ive lost my muscle because I still weigh roughly the same, but it must be in my arms cos I dont fit into my new work pants and they are a size 8. I have to keep a belt on to hold them up and my work mates are starting to get concerned. I have a solution to that - my auntie in law and my mother in law are trying to push me and my partner to the top of a waiting list to see a psychologist. They are involved high up in Communicare and they can access all sorts of assistance for us....they are even planning to lodge an application for HOME HELP!!
Home help is going to be awsome because taking shifts in hospital for breakfast, lunch and tea is so difficult. I got so worn out I couldn't hold my arm up to type at work. Plus Charlie goes to school everyday next year. I dont see how we can be in 2 or 3 places at once.
Something more shocking happened this week... I took Andrew to the doctor at hospital for his first checkup. We pinned him down and looked into his mouth. The doctor said look here and boy his throuat looked so different from normal. It was a small hole surrounded by lots of deposits of skin and the hole was struggling for air. The doctor and me didnt talk about it. In fact I didn't think about it until that night at work when I realised the implications of what I saw. I cried alot that night and didnt sleep much. My partner remained aloof and got irritated when I tried to snuggle into him for reassurance. LOL I never snuggle! Poor Andrew living with this for a year and a half and i've been ignoring the fact that he snores, has trouble swallowing food and can breathe better when he falls backward in our arms. I emailed the doctor and asked is it life threatening? He replied yes if he gets a bad flu or virus. So I thought one baby Michael was in a serious situation but turns out that little Andrew is even more so.
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