It’s easy to focus on the negatives when dealing FPIES, so today is a chance to focus on the positives, and thank those who have helped us out. With FPIES help is always appreciated. I’m borrowing the idea for today’s post from a fellow FPIES mom. She describes the joy FPIES Angels bring “These encounters inspire gratitude so deep and profound that they motivate you to pick up the pace and keep going. They are encouragement in the darkest moments, and their worth is more valuable than words can express.”
We got to take a vacation to TX and stay with my husband’s family a few weeks ago. My mother-in-law offered to cook Little Wiggles’ foods to make traveling easier for us, and I happily took her up on it. Countless emails and phone calls where exchanged, sorting out the logistics of acquiring and cooking food safe for Little Wiggles. My MIL spent hours driving around hunting for her foods and cooking them. Everything turned out wonderful, and I got to enjoy a break from the perpetual cooking and dishes I usually deal with. I really enjoyed the time I got to relax and spend playing with Little Wiggles.
Our church here in CO recently had a party for all the staff kids. The lady organizing the party took the time to talk with me about what things would be safe to put in a party favor bag for Little Wiggles. She also talked to me about the food they would be serving so I could make some similar items to bring. Little Wiggles really enjoyed her gift, and I appreciated the thoughtfulness.
I had to go to FL to fulfill my annual Reserve duty requirements. With Little Wiggles needs, this is a logistical challenge. My husband was able to take leave for the first week of my five weeks, but that still left me alone for the next four weeks. The pastor and his wife, from the church we used to attend there graciously agreed to let us stay in their home. This gave us access to a full kitchen for preparing all of Little Wiggles food. After my husband left, this couple was amazing at helping me out. I could not have made it through that very stressful month without them. They watched Little Wiggles play in the evening while I cleaned up from her supper, stayed with her while I delivered samples back to the lab at the hospital, and encouraged me. When Little Wiggles was having trouble sleeping because her belly was hurting from and FPIES reaction, the wife rocked her so I could get ready for bed and prepare for the next day. They helped with dishes, and cleared space for her food in their refrigerator. In short, they were amazing, and a wonderful example of how the church helps care for one another.
While I was at work for my Reserve duty, Little Wiggles needed to go to daycare. A friend of ours owns a wonderful daycare, conveniently located near the base. She worked very hard to make Little Wiggle’s experience there safe, educational, and fun. From using a special soap, to a dedicated high chair, no detail was overlooked. Little Wiggles had a great time, and still asks for her teachers and friends from there several times a week. I was able to focus on my work, knowing Little Wiggles was in good hands.
We are very thankful for the pediatrician assigned to Little Wiggles on base. Little Wiggles doctor has taken the time to educate herself about FPIES, and been very helpful. She has been willing to right a referral for us to all the specialists we need, and has a quick turn around on phone messages, saving us trips to her office.
Thanks to cradlerockingmama.com for the inspiration for today’s post.
(Note: this post was originally published on my old blog August 2014)