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...from the hospital after a 1 week stay.   I am still processing through all that we accomplished, how much we were supported and cared for during this week at the hospital.   We are so very hopeful, and have been praying for, a better path of health for Little Man.   We hope conquering his anemia and this soy trial are getting us steps to that- giant leaps maybe even?

The symptoms we were concerned with with the introduction of soy did not build or worsen.  In fact, they seemed to even out a bit.  We may be dealing with some refluxing as his agitated states are when he gets up in the morning and when he wakes up from his nap, so that could explain that.   He doesn't reflux unless his body is not properly digesting a food. So, that is noted.    His flat affect was very concerning, his "poker face" as his daddy calls it- an expression-less deameanor with no interactive play.   But he didn't have that much today, and the refluxing pain was less as well.   We felt everything looked stable enough to at least continue this at home- sleeping in his own bed and playing with his brothers, getting back into our routine may help filter out his fussy spells and disturbed sleep -- or it may make it more clear.   

Whatever happens, we have a plan.   If things stay the same- we continue soy and have our follow up with GI at the end of next week.  If symptoms build, and are not vomiting/diarrhea/dehydration/lethargy- we call GI and go in for direct admission back to be monitored; if vomiting/diarrhea or concerns of dehydration and lethargy - we go right to the ER.   We have a plan, a "safety net".  We have a new level of stress relief, a heavy-heavy weight lifted off our shoulders. 

Little man giggled when we walked out to the van after being dismissed - as soon as he saw the van, he giggled.   He got excited to get into his carseat and sang on the way home, calling for "daddy" (his new favorite word). I've spent most of the time with him at the hospital, so he has missed his favorite playmate- daddy....and of course his brothers (we've been working on him learning how to say their names).  

We continue with soy, mixed into his formula - increasing every day...unless we see new symptoms that deserve attention.   I'm still nervous to call it a "pass".   Soy is so closely related to dairy and his dairy intolerance is so sensitive, we've never even "trialed" a whole dairy protein because of his reactions to dairy in my breastmilk and from crumbs and from hydrolyzed formula's.    What if he builds up an intolerance to soy?   What if we're pushing his body?   On the other hand, soy is a common FPIES trigger and if he could truly pass this, and thrive on it -- would really give us hope that we can do bigger food trials with more confidence.....although there is no rhyme or reason to FPIES triggers in kids but to have so many fails only under our belt- it will feel good to have a pass, especially such a big one.....