Merry Christmas!!

Charlottesville, tomorrow...

We will be taking another trip to Charlottesville tomorrow so that we can get the list of procedures done and off to the labs. Shaun will get a skin biopsy and lumbar puncture (spinal tap) under sedation. Keep him in prayer for the next couple of days as the spinal tap can cause headaches.
For the last couple of weeks Shaun's been having a hard time keeping down his feeds.  He's been throwing up lots. I am able to keep him hydrated enough but he is not putting on any weight. We have tried erythromycin for gastric dumping, Docolax for pooping regularly, changing the way we feed him, the amount, time and adding water to it. He seems to do a little better when his formula is cut with clear liquid. Talking to a nutritionist, we are going to try and put him on a different formula, whey based, to see if bulk in his belly is the problem. We are changing pediatricians with him after careful consideration, since his old one has all our family knowledge but feel like the closer office and new eyes may be what Shaun needs most. It will be a challenge to get the new doctors up to speed, knowing Shaun, his case, what his care should be, me, ect. but having the office in our town will be a major help. We will be able to go in for weight checks regularly, they admit to the hospital I prefer and have a new set of eyes to look at what is going on with Shaun and maybe have some new ideas how to help him out. Pray for all these changes! God is good. A friend and I came before Him last week and prayed for Shaun to be able to poop regularly and starting that next morning, Shaun has a b.m. every morning!!  Who knew I would be so excited about poo! I will update on how the procedure went. Thank you for your prayers!