Glimpses of our girl and the Upper GI

Good news... Gracie has been spotted! We've seen glimpses of our giggly, sassy girl and we sure are happy to see her when she appears! She woke up this morning happy, begging for a bath and asking to get dressed for school. Granted, it was 3:30 in the morning, but still! She had been fasting (for the Upper GI) since about 9:45pm and was, therefore, in a fabulous mood.

Upon arriving at the hospital, she waited with me to check in and then took off, wheeling herself through the lobby to the elevators. Despite my best efforts to explain to her that we were there for pictures of her tummy, she was expecting therapy with Ally or Hema and was furious with me when I told her it was my turn to drive her wheelchair. She was not happy about waiting around, but then was a total trooper during the study itself. Once she understands she's not staying at the hospital, it's amazing how well she does for various procedures - - especially considering all she's already been through and what she's currently going through. She handled the barium well, just a tad over an ounce, but then was extra junky for about thirty minutes afterward.

The radiologist informed me that she definitely does not have SMA (Superior Mesenteric Artery Syndrome) - - that is good news. She did not, during the brief study, reflux any of the barium - - also good news. (She has not shown signs of reflux for the past three Upper GI studies or her last two Gastric Emptying Studies, though many doctors assume the increased secretions following feedings are reflux related. We think otherwise... it's more about her body's response to the discomfort and digestive process. She has great difficulty processing fat and protein, no matter how broken down the formula is. Dr. Grant indicated on Friday that what we describe, coupled with her surgical history, doesn't sound like reflux to him either.) The radiologist confirmed that her Nissen Fundoplication is slipped - - we have known that for years. He confirmed she has caused a Hiatal Hernia - - we have known that for years as well.

Previously, Gracie's team determined that surgery to repair the hernia was not indicated, as the hernia is not that severe. We will see what Dr. Grant and Dr. Idries think... especially since Dr. Grant discussed Gracie's Fundo with me at length on Friday. While he doesn't dismiss the idea of her abdominal migraines cycles and migraine headaches at all, one of his opinions is that Gracie's body has been reacting to the Nissen Fundoplication all these years. The intolerance to feedings and excessive, clear, stringy secretions that she produces for hours on end are common reactions he has seen in children who were, as it turned out, not good candidates for a Fundoplication. Gracie's Fundo was done at seven weeks (due to repeated vomiting and reflux which caused aspiration pneumonia), so we have no way of comparing the before and after. We do know this... the cycles are predictable and come in waves, so while the issue with the Fundo could be exacerbating the problem, we don't believe it is the only problem. And really, we still don't know what the problem is.

For now, unfortunately, we are supposed to just wait and continue what we've been doing. Dr. Idries will get our messages when she returns from vacation tomorrow and, hopefully, she will conference with Dr. Grant and then call us before the appointment next week. Yesterday, following her second feeding of the day, she slept for four straight hours and then slept intermittently until she "snapped out of it" a few hours after the fast started. She's asleep right now, and has been, since her second feeding of the day. (She handled her first feeding following the fast pretty well. She sat at the table and colored with Preston and we practiced tracing some lines and circles. Once she had that next feeding, she checked out again.) The abdominal migraine cycle is over, thus the continuous, excruciating pain has subsided. John and I decided that we will back off of Gracie's feedings during the day (go back to her regular "school/therapy" schedule) and send her to school tomorrow and Friday. We made this decision based upon the fact that if we aren't feeding her around the clock, she is herself again. She deserves the chance to have a couple of good days at school and then I will resume the 'round the clock "torture" over the weekend - - all of this contingent, of course, upon whether we hear from the doctor sooner rather than later.

So, we are in holding pattern of sorts... waiting to discuss all options and risks, waiting for answers to our many questions and waiting to schedule her admission.

And, again... a huge thank you to everyone for the emails, texts, voicemails, blog comments and FB messages... we can feel all the love and support... and we are so grateful. We wish we had time right now to get back to each of you personally... we hope you understand why we haven't caught up with all of you yet!