I am having the hardest time shaking my anxiety about Ramona’s spine. The MRI had to be rescheduled for August because they decided she needed to be under general anesthesia for the test. We will see the neurosurgeon this coming Monday for a consult. But in the meantime I just can’t stop thinking about it.

One day I’m convinced it’s nothing and the next I’m sure she’ll need surgery. I feel dumb for not realizing that her dimple may be a problem and a little angry that no doctor has noticed it before. The surgery to release her cord, if it is tethered, would only halt any nerve damage, not correct damage that has already taken place. I can’t help but worry, “What if she never walks? What if she never gets bowel and bladder control? What if she’s in constant pain?”

So I’m a mess today. But I’d also like to share some good news from the past week. Ramona is completely off the methadone and ativan. She is gaining weight again, she’s 17lbs 9oz. She’s off of her continuous night feed. These are all good things and prayers answered.

Because of the issue with her spine we have cancelled the G tube placement for now and are holding off on the “helmet” too. Please pray that all of these things are working for the good. Please pray that the timing of all of this is right for Ramona. Please pray that my mother’s heart will be able to send her back to surgery, if need be, without breaking into a million pieces.

Love, Jane.