*Amajane*

I wanted to reply to your post about feeling lonely - I know exactly what you mean about not feeling connected to other mothers.  Sometimes I feel like I am hounding the EI people when they come in about their other children they work with, wanting to know about them.  We don't have a diagnosis, just hypotonia and its so hard when you never had a baby before to even see what's normal - its like I want to talk to someone else about Isaac, but can't.  In the NICU we couldn't even talk to our neighbors (i understand due to privacy concerns) and now we can't talk to other moms who use EI. 

My little guy has a feeding tube  - and I have sooo many questions about how I'm supposed to care for it/what is normal/when will we ever get it out - and there is just NO one to talk to about it.  The doctor gave us a 1 minute tutorial at the hospital and said there you go.  My pediatrician tells me he has never seen a baby like mine.  And its hard when friends who have babies talk about their milestones - when I'm just scared if mine will ever meet his.

  I know you've said before that Marley's condition is rare - only 35 diagnoses a year or something like that - so I'm sure what you are going through will be even harder to find someone to relate to.  I just wanted to let you know that you aren't alone - and even though all of our babies on here seem to have different conditions - it comforts me to be on here.  I hope you find a playgroup out there!