Illuminating Ellie

This week was filled with mixed emotions, but who are we kidding, that is our life lately.  After almost two months of waiting, we finally had our Katie Beckett interview/eval Monday. It was two hours of back to back questions about Ellie and her abilities. Hearing it in a string of questions, one after another after another, was heart breaking to say the least. I had to excuse myself three times. It’s like you know she needs help, but to hear it all at once was very overwhelming. They asked questions like:  Can she hug you? Does  she put her arms out for you?  Does she understand when you point at things? Can she sit on her own, without support? Can she eat on her own? Can she hold her bottle/sippy cup? And just a lot of other questions that one at a time are probably manageable, but all at once were unbearable. We got through it, but there was a bit of a cloud over the week. One thing I have been feeling lately, with Ellie being undiagnosed, is that maybe there’s a...

Three months… it has been three months today since our lives were turned upside down. How can it be three months and yet we still have no answers? We just sit, wait, and watch our little girl, day in and day out. She has had three MRIs, a spinal tap, more labs than I can count, yet, we just sit and wait.   Two months ago, we were told the next step would be genetic testing (whole exome sequencing), but it turns out you have to jump through hoops to get the insurance preauthorization and we are still waiting—it’ll be another 1-2 weeks before we have an answer, which may not even be in our favor. How is this even possible, how is this even okay, to make a now 15-month old baby wait? Our sweet girl has stopped growing. Have you ever heard of such a thing? We had her 15-month checkup last week and she has not grown in length, at all, in three months time—they rechecked her three times. She has gained a couple ounces in weight. Her little feet haven’t even grown. We just sit here and w...