Wednesday, 9 May 2012

Finding Normality....Again!

Well, here we are, Christmas 2011, we had a well Faith and more good days. I am feeling better about life and seeing Faith progress now is very exciting. We are still struggling with Faith's weight sometimes it might increase slightly then go down, so it is sort of stagnating. It is so frustrating we are trying so hard but with all the UTI's and Faith's normal vomiting it is very difficult. I talk to the Brisbane dietitian once a week and she offers advice. We met some family at a park the other day and one of them was wearing a hat and Faith said hat, very cute, a new word. Faith waves, says hi and hello and loves when we say dancing hands as that is what she does. One of Faith's favorite past times is reading. She spends so much time turning the pages, looking at the pictures and touching the books. Another really exciting development is when we say 'roll' to Faith she will turn the upper half of her body and we just give her a hand with her leg and she rolls to her side. YAY! Very exciting! We are getting out more and having fun days. I feel like we are just starting to live again.

We are still having problems with UTI's 1-3 times a month but we can treat them now without going into hospital. We seem to have more control of our lives and it feels good. We have tests strips so we can see whether Faith has a UTI and then we can start treating it while we wait the few days for the lab results to come back. UTI's give Faith increased vomiting, restless overnight, and high temperatures. We have found a local pediatrician and he is a good help to us. Due to all the UTI's Faith has had the urologists wants her to have a DMSA scan but the problem has been Faith has to be clear of a UTI for 12 weeks and that hasn't happened so we just keep rescheduling the appointment. At this point I can't see how we are ever going to be clear for 12 weeks. We have an upcoming appointment with the urologist so we will talk to him about it then.

Faith is texture sensitive not only to any new foods but objects and just exploring the world. It is quite a long process and we have to try and include a variety of objects that have textures so she can learn about them. Faith has little leg wraps now and we can see that they are helping keep her legs out straight as before she kept them like a coat hanger. As she always had her legs pulled up when she was in pain and now is it is what she is used to doing. At this point Faith is still unable to sit up and we struggle to find good seating positions for her. We applied for a pram and it has body support so she can sit straight and supports her head better but still allows for her to develop her head control. The pram comes with tray so she could play with her hands more but we haven't heard back about how our application is going with NSW Health.

Even though Faith still gets sick from UTI's and we still have bad days our good days are starting to outnumber the bad. This is so new to us and it is WONDERFUL! Faith and I have been going on play dates and it is really positive for Faith to learn about other kids as she really hasn't had the opportunity to do so before. It is fun to do something 'normal'. It has been good for me to interact with other mum's and not feel so isolated. As a family we have been going for walks together and even going out for a few hours for a trip. We pack up the oxygen and all the NG feeding things and head out. It is getting easier and we are adapting to doing a variety of tasks out and about. I know for me there came a point when I truly accepted that my life is different to what I dreamed of and that embracing this new life and discovering the beauty in it. I am not saying that it is easy, it is hard and I do have bad days but every step forward is so much more appreciated and noticed. By me not only accepting my situation I am helping Faith accept her life with special needs and allowing her to be confident and ready to take on the world. I want to give her everything that is possible and give her just as many wonderful and exciting experiences as she would have had had things been slightly different. There really is happiness for the 3 of us, but in saying that I still get quite emotional at times and find my world hard to handle and want more for my little one. But that is natural. Faith is a blessing to us. We are finding our own normality....again!

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