Just a short post to ask for prayer for Josiah. We came back from the feeding clinic in March and thankfully he has been off the tube since that time. The other good bit of news is that he is a really healthy weight – over 25lbs. He is about 50th percentile for his weight and height for his age which is great – alot of this is down to the high calorie milk we have been feeding him.
However his feeding has never been great and it seems to have gone downhill in the last week. We typically do three main feeds a day – at the beginning of the feed he still empties whatever is in his stomach out. Each feed lasts about an hour and is quite an ordeal for Josiah – he has become increasingly resistant over recent times. The amount that we can get in him has decreased from over 2 oz a feed to around 1/2 oz every feed – it is alot of work to get very little in. Added to this is the disheartening fact that we have to give him Zantac medicine to reduce the reflux – yet he is super resistant and will often spit up everything in his stomach when we give him this – which means the hour of feeding is now down the drain….
Added to this is the fact that now we have been advised to stop feeding him the high calorie milk as it is too hard for his liver. Both his therapists say he is one of the hardest feeding cases they have seen which is none too encouraging. Anyway enough to say we are planning on going to England in less than 2 weeks and we could really do with your prayers for Josiah, Shari who is doing most of the feeding and Jono.