(If you’re new here, Charlotte, or Charlie as we call her, is our 23 month old daughter who has a rare genetic disease called CDG-1p. CDG stands for congenital disorder of glycosylation and currently there is no known treatment or cure. Charlie is one of less than 15 people who has ever been diagnosed with her specific variant of the disease.) So, a little back-story: in late 2016/early 2017, Charlie had a seizure-free stint of about 8 or 9 months. We had begun weaning her off of all her meds to see if she could remain seizure free without medication. Right at the tail-end of the wean, her seizures resurfaced. It was around July of last year, and we were devastated. And since then – so basically the past 6-7 months or so – we have been trying to get her seizures back under control but with no luck. Finally…
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You may recall this post where we tried out Comforts Diapers on little Charlie babe. Well, we were so pleased with our experience with the diapers that we thought ‘hey – why not give some of Comforts’ other products a whirl?’ So we are doing just that! Comforts formula is NON-GMO and is produced using only ingredients that have not been genetically engineered. We had the opportunity to team up with Comforts formula to have our Charlotte Rose try out their new formula. Now as many of you probably know, due to Charlotte’s health and the recent placement of her feeding tube (discussed in this post, this post, and this post), there are some unique needs we have to consider when selecting formula for her. I was instantly hopeful that Comforts formula could be a good fit for Charlie-babe when I learned that: first of all, the formula is…
We’re headed home from the hospital today! Huzzzzah! Sharing an update on how Charlie is doing post-surgery. Thanks for your prayers everyone! Love you long time!
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There are some changes coming around here, so here’s a Charlotte update for you. Thank you for your support and prayers!
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We finally have a diagnosis for our dear, sweet Charlotte Rose, and I felt like it was time to share it with all of you. THANK YOU so much for your ongoing care and support. I cannot begin to express how much it means.