It's Sunday night. K will be having another heel prick test tomorrow morning. I still feel the knot in my stomach when I think about it. The next challenge for us this week is to learn how to do the heel prick test ourselves at home. I am dreading it but it needs to be done. I also can't help but worry about his phenylalanine levels. I hate waiting for the results. Will we ever get used to it and be relaxed about it?
K has been sleeping pretty much all the time for the last few days. He only wakes up for feeds and goes back to sleep.Sometimes we even had to wake him up for feeds because he will just sleep through. He doesn't have jaundice, we checked. I hope this is just a normal 3 week old baby behaviour. I will be checking with the Health Visitor when she visits us in couple of days.
I am feeling little bit more normal today. I managed to pick myself up and play with our daughter like we used to. Her mood lifted immediately. It must be so difficult for her. We all made a trip to supermarket in the afternoon, it was not enjoyable. Every aisle we turned into, I was telling myself ; K would not be able to eat this. No meat, no dairy, no chocolate or cakes, no rice and the list goes on... I have to find out what he will be able to eat otherwise I feel like not eating or buying food. I feel guilty eating the food he won't be allowed to. I don't know if this is normal at this stage but I hope it will pass. I have to be strong for my family...
I have just watched a very inspiring video of a young woman who has PKU talking about her experience and her mum. Watch this...
https://www.youtube.com/watch?v=dhNjfcHFEjQ
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