In the beginning when I started this blog, the reason was to spread awareness. I knew that my husband and I became frustrated for years by not being able to find information on the type of diabetes my son had. No matter what search we put in, the information about “babies with diabetes” just didn’t exist. At least not in the way we needed it to. As time has passed, our unique situation has changed and evolved into something we could have never anticipated.
Now we live beyond the “Miracle of Glyburide” which enabled our son, and subsequently our daughter, to live with diabetes free from insulin shots, pumps, multiple daily blood sugar checks and counting every carbohydrate that entered their mouths. After that miracle, our lives turned into a daily struggle. A daily question of what will come next. A day by day account of doctors telling us “we don’t know, you are the expert”.
Amidst all of our day to day struggle, regardless of my lack of posting, I still receive comments from parents who have just had a little one diagnosed and want answers. So I have decided to attempt a site change. I am going to attempt to add pages to the blog and revamp the site to be a diary of sorts. I want to tell our story, but I will save that for the book (if it ever gets published!). What I want this site to become is a place new parents and struggling parents can go to for answers and tips. I have some ideas of what the new site will need to contain but I also need your help to tell me what you want to see or need to see.
Over the next month I will be posting and adding pages. I am also going to rename the blog because it will be more than just about the kids. I want it to contain information for caregivers too. Due to the nature of how rare their particular mutation is, the site will also broaden to encompass other diagnoses. Specifically, I will include research and tips on how we deal with ASD (autism spectrum disorder), SPD (Sensory Processing Disorder), family time with special needs kids and tips on how to organize all the paperwork and therapy tools.
Bear with me as I redesign the site and feel free to comment with your ideas or your own tips.