Today is a week with no overnight feeds and Jason has gained 200 grams according to my scale. I am extremely pleased. It has been 6 years and 3 months of no sleep for myself and Bruce (which is like having a new born baby for this time). We are finally getting a full nights sleep. Jason is finally getting a full nights sleep. He hasn't had any diarrhea accidents, weeing less therefore less nappies and changes during the night and no more pump feeds.
Hopefully the weight gain will continue. I am trying to pack as much as I can into his food that he is eating or drinking orally. He is still loving his eggs. He has breakfast with us in the mornings which is either scrambled or fried eggs and quite often has boiled eggs that he sits and eats like a snack. SO we continue to encourage eating and increase his daily intake.
A few weeks ago I created a new page called "Jason's difficulties and diagnosis". This gives everyone a better understanding of Jason and what he has and what problems he battles with - take a read. It is the 4th tab on the left menu.
The results of the protein creatinine test was a bit high and has come up from the last result so we need to keep an eye on this. This is on maximum meds for Jason's weight. We need to make an appointment to see his nephrologist sometime soon for an examination and for him to see and discuss Jason.