Per the OT's suggesttion, we did try a weighted blanket, but it actually seemed to keep her up more as she is so restless - rolls around SO much, that it seemed to get in her way and wake her up.

As to acid reflux, we did an upper and lower endoscopy which ruled out reflux,but showe lower inflamtion consitent with allergy, this is after having tried all three perscription meds that she had significant reactions to.

We're currently six days in to a month long process of trying to transition her over to a different elemental formula called neocate jr. She's on neocate infant right now but apparently that has an oil that is derived from soy that the allergist is concerned about. Her diaper rash looks like it's getting worse which is one of her tell-tale allergy signs so I don't think it's going to work.

Her developmental ped had a IGG blood test done which shows sensativities as opposed to just IGE mediate allergies. Almost every food she was currently eating, she was also reacting to. She's now back down to just four solid food items, three of which she is testing postive for. Her feeding team didn't want to take her down to just one items as they felt the developemental advantage of having more variety was greater than the possible reactions she was having considering that she is significantly delayed in speech and given the theory that the soy based oil could be driving the overall sensativities. However given her seeming negative reaction to the new formula I don't think we're going to get that far. The crazy thing is, to look at her you'd never know, she looks quite the healthy cherub. It's taken working with doctors that are really familiar with neorolgical issues like SPD to realize that just because she gains weight doesn't mean there isn't something seriously wrong going on in her immune/digestive system.

I think this has been the most befuddling thing for me as a parent. The complexities and scope of a neorological disorder are so unlike other diseases and ailments in that you can't expect that symptom + treatment = problem solved. I think about this constantly - how can we solve this, what haven't we tried, what have we tried that was maybe to close to other things we tried and maybe wasn't a true result that we should try again. Still very little has changed despite our efforts and I can't help but wonder, will I be able to out last this? We were assured that it was colic and wouldn't last past 4 months, then it was reflux which shouldn't go past 7-9, then it was "it reallly get's better when they walk," and now I think comming to terms with reality in meeting with doctors who understand this disorder, it may get better but it may take a while and thinking about that just make me tired and I'm already tired.

This probably sounds silly, but right now my greatest hope is that someday Julia and I will be able to snuggle to sleep together, lying still in bed. If that doesn't happen I hope some genius will invent a swing that holds both a sleeping child and a sleeping parent.

Sorry this has turned into a bit a diary entry... I'd still love anymore suggestions.