Nathan has been coughing since the weekend (mainly at night/nap time), and has had a runny nose again... is it a cold or is he allergic to something!?!?!? No fever... as of yet. Oh how I wish this were simple!
By the way... next time Nathan needs a surgical procedure I will be demanding that it be done ASAP... We're one week down with two more to go in the wait until the 17th and it's driving me crazy. It's way too much time to think about it and second guess it and wonder if we've exhausted all other resources before surgically placing a feeding tube in to his precious tummy. Deep down I know it's the right thing to do, but it doesn't make it any easier. These three weeks are giving me nothing but time to think about it way too much! Please pray that these next two weeks will pass quickly!
In an effort to focus my crazy thoughts in a more positive direction I have contacted Ellyn Kodroff with CURED about fundraising/events to raise money for research. 100% of the money that is raised goes towards finding a CURE for this terrible disease! I will be calling her tomorrow to get all the details. I am nervous about it, as planning and hosting a fundraiser event seems bigger than what I can handle right now in my busy life, but I know that with the right support from friends and family I can make it happen!
Another EoE mom I met through facebook across the country in California, has held several events since her son was diagnosed and she has been kind enough to offer advice and tips on getting things rolling. She was honest and said that she was just as nervous about it as I admittedly am, but she has worked through that and has done amazing things for awareness!
So here's to biting of way more than I can chew and trusting in God to make it happen!
I love fundraising... If I can help at all let me know! XO
ReplyDeleteThat is a great way to focus that energy! Good luck! My almost one year old had the exact same symptoms as Nathan last week. No fever, but a cough and runny nose. She ended up with a double ear infection--boo.
ReplyDeleteI hear ya sista! :)
ReplyDeleteWe had an appointment with the GI today and he brought up having a "long-term" plan. We were discussing a g-tube and when I asked his thoughts in terms of when, he said when he does the next scope (within 3-4 weeks). Dah! I hadn't realized we were "there" yet. We meet with the surgeon tomorrow and I'm too scared to google g-tubes but I will because I need to go in with questions.
You are truly not alone! *Hugs*
Anne: Thanks! I will let you know and I may even need some help brainstorming ideas... let me know if you can think of something that wont be crazy overwhelming. I want it to be successful, but not anything that adds stress to my life.
ReplyDeleteTrisha: Sorry to hear about the double ear infections! I hope your little one is feeling better!
Momma J: We didn't think we were "there" either when Nathan got his NG tube only 3 weeks after being diagnosed with EoE! At that point we did begin talking about the G-tube just because we didn't want to be "shocked" again by the unexpected. Which as you know is about the only way EoE operates. Go ahead and google it and most of all visit: www.feedingtubeawareness.com and find them on facebook too if you are on there! The facebook page is full of wonderful, supportive people ready to answer any questions you may have and calm any fears. How has the NG tube going? I'll bet you are a pro at placing it by now... they say the G-tube is just as "easy" to get used to, so I'm hoping they are right. The healing process is what I'm worried about mostly. Keep in touch and let me know how things are going. :o)