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
Sunday 23 March 2014
Thursday 20 March 2014
Finding out about PKU
I am an average mum with a 4 year old daughter and 20 day old son. I have decided to start this blog to record our journey with PKU as I feel this is going to be a bit of a challenging journey for our son and all of us and the family.
We found out about his condition 10 days ago. I delivered our son by C-section and had come out of hospital with great happiness and pride. We were making the most of our new addition to our little family as much as we can. The news about him having PKU had arrived on Monday morning on my mobile phone. I was having a lie down when my husband answered the phone. I didn't think anything of it until I noticed that my husband was on the phone for sometime sounding very concerned. I knew he was talking to a health professional about our son. He was asked to take K to hospital for further blood tests and that they will explain. We hadn't heard about PKU before and hadn't realised the extent of its condition until we were sat down and explained by the Dietician and the Paediatrician. When the news finally sank in and when I blinked for the first time since I entered the room, tears came rolling. I was hugging my daughter and crying on her shoulders. I felt so guilty for looking like that in front of our daughter; the last thing I wanted to do to her was to add more complications to her life and have her worried. I just couldn't hold back the tears and felt a meltdown inside me. Both my husband and I have been full of tears, lost appetite and felt a huge knot in our stomach. We feel lost, helpless and very sad. Still in shock. We still don't fully understand the meaning of a life with PKU condition and can't help but feel very sorry for our little son as he has to live with it all his life. We are so grateful that it was caught early and it can be managed to avoid permanent brain damage.
Our journey has begun...
In the last 10 days
- We have contacted the NSPKU for information and received various leaflets
- K had to have many more heel prick tests done (every other day) and the blood cards were delivered by my husband into the lab at the hospital so we could get the results on the same day
- Our son started his special PKU formula milk, topped up with breast milk
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