Grrrr

Well we had our follow up with the GI and his feeding team and I came away feeling very frustrated. I didn't hear anything unexpected, but I am just discouraged overall. Basically the main concern is once again Emily's weight. She isn't gaining weight, so we are back to square one and having to force feed her thru the tube. She is still allowed to eat and drink whatever I can get her to by mouth, but I have a certain amount of ounces that she must have each day thru the tube (and it must be Pediasure, I am hoping our home health care service can help provide that for us, it is expensive and there is no end in sight to stop using it). As far as we know Emily's body is working correctly. I will videotape several feedings and then have an evaluation with an occupational therapist and a feeding therapist who can hopefully come up with a specific plan for food, and they will also be able to see her interest or lack thereof during a meal. I was kinda hoping that someone would say "hey there must be something else going on that Emily is not able to maintain or gain weight on her own", but that wasn't the case. And as is always the case, I come away feeling like I was on trial, 100 questions/suggestions at a time and they (2 therapists, dietician and the GI) tend to make me feel like I don't have a clue to what I am doing. I just want to beg God to give us some kind of glimpse of the plan He has for us. Justin is expecting lay offs any day, work is scarce right now and as things with Emily are not progressing we really cannot move too far just yet. I always know that things could be worse (I read several blogs of other mothers that have children with terminal illnesses or life-long disabilities), we are sooo thankful for healthy children. Sometimes I just wish things would be "normal" for a little while.