Sherry,

Another important point is that even if you are with your daughter 24 hours a day, 7 days a week, 365 days a year- you will run the very high possibility of her needing medical attention and not being able to get it quick enough.  So that point of you always being with her is frankly moot.  It doesn’t matter.  We have had several ER visits where they were incredibily busy with priority 1 patients.  Even though my girls are considered priority 1 we still needed to wait.  More than once I have injected them with solu-cortef in the waiting room of the ER and it saved their life!  Lately, we have been injecting them before going to the ER and it has worked very well.  They are usually severely dehydrated but their electrolytes look good considering.  You need to have all of the proper tools to allow your daughter to thrive.  That includes the knowledge and support you get here and elsewhere and ALL of the meds.  Just something to think about and please let us know how it goes!  We’re all cheering you on!!!!!!

Blessings,

Tonia