WARNING: This post is a bit of a rant, mixed in with a bit of annoyance and self-pity. If you're in a good mood, you may want to go visit another blog.
Fisher is not eating...again. And when I say he's not eating, I mean he's getting between 500-800 calories a day; that's half (at best) of what he needs. His EE symptoms are cropping up again. He's starting to gag on his food, and it takes him a couple of hours to eat half of a meal. The coughing is getting worse, he's not sleeping well at night, and I won't even bother to tell you what's going on in our bathroom...This disease is horrible! I have to wake up and watch my poor baby starve each and every day. He complains about being hungry and when we give him food to eat, he's afraid to eat it, afraid of how it's going to make him feel. I wish that we left for Cincinnati yesterday! Not that it's going to solve everything, because we know that it won't. But at least it will be a little comforting working with professionals in this field of medicine; people that KNOW what they're talking about. Last week we went to another specialist visit. The doctor suggested that we "just add some processed dairy to get some more fat and calories. If it's processed enough, surely he won't have a reaction. Start out with some yogurt, then cheese." I had to remind the doctor that Fisher is ANAPHYLACTIC to milk. The only time we ever had to use his epipen was with a reaction to dairy. If I eat yogurt and kiss his cheek, he breaks out in hives. Do you actually think that I'm going to feed him dairy?! Some people just don't get it. Apparently, even some doctor's don't get it.
So, I do have something to be VERY grateful for: God has given us the opportunity to go talk to a medical team that, not only "gets it," but they specialize in it. Thank you God! Please keep praying for Fisher; for comfort, for his little body to fight hard and stay strong. Pray for his spirit. It's so tough sometimes to have to explain to him why he can't eat all of the foods that other kids are eating, and yet he's still such a trooper about all of it. Pray for our family as we prepare to leave for Ohio. We'll be driving (pray for Paul and I in the car with our three littles for 16 hours), so pray for a safe trip. And PLEASE pray that we get some answers from these doctors. We know what Fisher has (it's called Eosinophilic Esophagitis), but we haven't found a treatment that works for him yet. We WILL have a game plan in place by the time we return home. Lastly, please pray that through all of this, through all of the suffering that our baby has to endure, that God will be glorified; that this will somehow be used for His glory.