We found out yesterday that Brendan has been accepted as a private patient @ the Pediatric Center of Rare and Complex Disease in New Jersey. What does this mean? There is a doctor in New Jersey who is conducting research studies on FPIES. Not only that, but she can also offer treatment to patients. No, there is still no cure for FPIES but we are hopeful that this new doctor may be able to shed some light on Brendan's medical needs and offer support. We have met with such resistance from local doctors regarding Brendan's current medical state. Everyone recognizes the secondary medical conditions as a result of FPIES but no one has been willing to step up and deal with it head on. I can't even get a gastroenterologist to scope Brendan. No one seems to understand that we need to establish a baseline. I suppose I am giving up on our local team of doctors for now and praying for a miracle in Dr. J and her team. It sounds like Dr. J will also help me to navigate through my breastfeeding journey.
We have also been blessed with an amazing developmental center who will assist us with therapies for Brendan's gross motor, adaptive, and speech delays on a weekly basis. Woo hoo...finally someone understands that we do not operate as a typical family. I am so thankful the developmental center is interested in not only seeing Brendan through this difficult time but his family as well. We have set some goals for Brendan and the rest of the family over the next six months and we are eager to see them come to fruition.
Next comes the latest and greatest in Brendan's ongoing food trials...and the reason for my blog title of "You win some and lose some". So far, Brendan's safe foods are banana and potato. We trialed coconut milk this week and it was a fail. Two days ago, Brendan started with hiccups, lack of appetite, fussiness, and holding his tummy. Last night, the frequent bowel movements with blood and mucous confirmed the failed trial. If we did not have the upcoming doctor appointment in NJ, maybe my feelings would not be as positive as they are in spite of yet another failed trial. I do try to take the positives as they come. After all, Brendan took a two hour nap today for the first time in weeks and I was able to tend to the housework! As I buzzed around the house folding laundry and vacuuming I thought, wow, at what point did I become so thankful for the opportunity to do housework?! I must be out of my mind. But no, I am just a mom who wants nothing more than to feel the gratification of taking care of her family. Before FPIES, I used to wish for the acknowledgement and occasional pat on the back for staying at home and caring for the family and household. Now? I long for those more simple times. I must say though, I feel like the luckiest woman on the face of the earth. No need to feel sorry for myself...I have an amazing husband and four awesome kids who know how to show up when and where it counts! Isn't that half the battle right there? I am also learning how to be more supportive, accepting, and non-judgemental of those around me. Things are so much better when we try to understand and appreciate each other. I firmly believe those are some of the lessons I am supposed to learn with this experience.