Nothing new

Sorry I haven't posted in a while. We have been busy with end of the year activities. We are looking forward to Christmas break - Macsen loves having his sisters home. And of course looking forward to Christmas though I wish we could spend it up north with family. We are just traveled out for a while and will stick close to home. 

Not much news to report on Macsen. We are battling the same problems - lack of appetite, constipation, very slow growth and weight gain. We will be seeing s new gi at Children's in Pensacola. I foresee many tests in our near future. Right now M takes magnesium citrate 2x/ day to help him go #2 but he still only goes about 1x/week. Not enough. Yrsterday, I switched him to goat milk to mix with his meal replacement powder - hoping that cutting out cow milk will ease his bowel issues. I have tried so many things that just aren't working. None of the tried and true things seem to work or are impossible to implement with him bc of his inability to eat many solids. He only wants to drink water so suggestions to drink nectars, juices, smoothies just don't work with him.

Something has to give though - his growth and weight gain have completely flatlined. He doesn't sleep well at night - needing to be rocked and soothed though he never fully wakes - just cries in pain. 

On the bright side his oxygen levels look pretty good - 90 - and his heart rate has come down.