Amazing what sleep deprivation can do to you. Any notions I have of being “in control” just desert me when I get to the point where sleep is more important than food. Trust me food is hugely significant to me. I function on automatic pilot and have a zombified approach to life during these times. I am still able to hear God I just have to be more determined to hear his voice.

Daniel has a cold, nothing out of the ordinary, just a common cold. He has felt rotten with it and has told me in no uncertain terms how he is suffering (must be practising for man flu when he is older…) In the past every time he has had a cold it has gone to his chest and we have always needed a trip to St Johns if nothing else to get a course of antibiotics. Praise God that hasn’t happened this time. One of the things that I regularly have to do is check that Daniel has enough oxygen in his blood and normally with a cold he is unable to get sufficient oxygen. His oxygen levels are amazingly high even though he has a cold. This has never happened before EVER!!! Thank you to everyone who prays so faithfully it is so much appreciated. I pray that Daniel would continue to be off oxygen as we are having a family portrait next week and it would be lovely if Daniel could continue to be tubeless (I know vanity).

The down side to the cold is the retching. He cannot be sick as he has had surgery to prevent this. However, his retching is very violent and unpleasant for him and definitely worse with a cold. Medical opinion is that ideas are running out… Daniel has been retching since February last year and it is devastating to experience. Your prayers would be valued on this. We do not know if this constant retching is a barrier for Daniel eating orally. He takes nothing by mouth at all. The entire world seems to be an expert on this and it is very frustrating to get so many opinions when the medical professionals are scratching their heads. I am praying for guidance and an answer to get Daniel to want to feed. As Daniel’s general level of health improves we will be moving more in that I call “real world” circles rather than just in the areas of disability. This feeding issue then becomes huge. Whilst I know nothing is too difficult for God and I genuinely believe this, take a few days of sleep deprivation and I feel discouraged that this ongoing problem appears to be static. I know long suffering is a fruit of the spirit but it feels like a grapefruit (something that is good for you but bitter to taste). Sometimes I just wish for something that just melts in my mouth, a fruit, which is so juicy, and refreshing that the taste lingers. But I know that God cares about our family and will meet our needs. I am reminded of proverbs 3 v 5:

“Trust in the Lord with all your heart and lean not on your own understanding.”