I feel I am finally at a place where I can focus on this blog and the book project once again. In recent weeks, parents have posted to Share My Story and Facebook, again expressing their frustration at where to start in light of their child’s diagnosis of CSID. Doctors and dieticians remain in the dark, and the response from the CSID Support Group site is slow, if any at all.
Although I realize there is some risk involved in publishing a recipe book, which includes CSID-friendly foods, I must step out in faith. I have invested several years of research, trial and error, and triumph. This past August, my most recent step of faith included finally adding starch to my son’s diet in the form of sprouted grains, flour, corn, potatoes and his favorite– peanut butter! At nearly six years old, he is doing well with the new foods, though he still takes Sucraid with most meals. I just love it when he asks, “Mom, have I had this before?” and then relishes each bite as if he is in Heaven!
Perhaps this new stage to my journey is needed to fully complete my book project. Knowing the possibilities will hopefully encourage other parents to take the slow, and sometimes painstaking steps needed before they can step out in faith as well. It has also allowed me the flexibility to be realistic, as our lifestyle sometimes requires less than ideal food choices for my family.
Before I turn this post into another book, I will conclude with a plea for support. I need your support through this process. Whether you are a parent, caregiver, cafeteria manager, doctor, or dietician… I want your comments, concerns, and of course success stories! Once the first edition of my book is printed, I will be working on the second edition… awaiting letters and emails in response to all aspects of the book. I want to know what really helped, what wasn’t neccessary, what ingredients were difficult to find, etc.
In the meantime, there are a few CSID groups on Facebook I strongly encourage you to join asap. This is the best way to connect with other CSID parents and have discussions about various topics. There is a link to join Facebook on the sidebar. If you are already a member, just send me a friend request and then join the groups from my page links. Also, from there, you can ask me to post specific things to this blog.
One more thing I ask… please involve your doctor and dietician! Print out the information I post here and on Facebook. They are just as in need of education about the CSID diet, and the more you can help spread the word, the faster you can help me reach my goal of having at least one copy of my book in every GI office across the nation.
Finally, I hope to be a reliable source of information. A lot of what I share with you, and the reasons I use caution are a direct result of the communication I managed to make with the administrator of the CSID Support Group site. I understand in recent months, she has become harder to reach for reasons I do not know or understand. Yet, I can offer you tid bits from my personal coorepsondence with her and help you to decipher some of the more difficult information presented on the website.
I look forward to getting to know each of your unique circumstances in coming months! Take Care!