Hello world. We are alive. We've been having lots of fun lately so please excuse our disappearance. We'll try to do better. Jake has had lots of doc appts, and my dear mom was in town for love and support, and we had my hilarious and thoughtful friend Caren from SLC come visit. We've been doing well, and the last few nights Jake has been sleeping better, going from waking every hour to waking every 3-4. We are hoping it lasts and are very thankful. The only thing we have been doing different is that I have been eating pretty much the same things every single day and his stomach seems happy with that, and we try and wear him out as much as possible by having dance parties in the living room, blowing bubbles, and encouraging him to bounce and play with his toys.
He has trailed more foods and failed every one. Our biggest concern is wondering how to teach him to eat, and wondering what he will eat one day. He has had a reaction to: pears, apples, rice cereal, and peaches. His reaction to pears and apples was projectile vomiting for several hours and with rice and peaches it was a full blown FPIES reaction where he went into shock, went pale, vomited, etc. We're really not sure what he will be able to eat. His body does not recognize or absorb those foods as nutrients and does everything it can to get rid of them. So strange so frustrating. The allergist called FPIES a beast. I wish I could take it head on, but we have to wait this one out until he is older and grows out of it. Could be in 5 years, could be in 2. We are working on a plan with the allergist to get him trying some hypoallergenic formula and we will slowly do some in clinic food trials.
However, He has been having GREAT days and is smiling more and crying less. It is wonderful!!! He is almost crawling, rolls everywhere, and pulls himself up and bounces on anything he can get his hands on. He broke the 20lb marker and he loves bubbles. When I get brave enough we will venture out with new foods, but until then, I am just fine not having to worry about if he is going to react or not.