Long overdue intro

laurding

Hello!  I have been a lurker for a while and I think it's time I share my story. 

My daughter turned 10 months last week.  She is our first.  She was diagnosed with severe congenital hydrocephalus (excess spinal fluid in the brain's ventricles) at our 20 week ultrasound.  We were devastated, to say the least.  The doctor told us that this was the worst case she had ever seen and used words like vegetable to describe the possible prognosis.  She suggested termination.  So, we got a different doctor!

 By the time DD was born, her condition was downgraded to what is essentially mild hydrocephalus.  For those of you that don't know, hydrocephalus is treated with a shunt that redirects the excess spinal fluid from the ventricles in the brain to the abdomen.  Well, our daughter hasn't even needed a shunt as of yet!  We are very lucky with this diagnosis thus far!

I noticed some delays early on and we have PT, OT and vision therapy.  It seems like every time we go to the doctor, we find out something else.  I sometimes feel like I am so overprotective and a little paranoid...but everything I have pursued has been true.  For example, I was a little concerned about her eyesight.  I called the opthamologist at the suggestion of our pediatrician when I brought it up.  Well, she needed glasses at 3 months and has thinned retinas.  I noticed her legs were different sizes around the ankles and thought something might be up.  She has a rare (like only 20 cases discovered rare) skin disorder.  I noticed she wasn't doing what I thought kids her age should be doing (I try not to compare, but it's hard!) and she does have delays.  Like I said, sometimes I feel like I am paranoid...

Tomorrow (yes, on a Saturday) we are going to a dermatology conference and getting a consult from different doctors and residents and they will discuss her case and get back to us.  They are even giving us a stipend for coming.  Has anyone ever done something similar?  Did you find the experience helpful? 

 Thank you for reading and I look forward to sharing more.  I am definitely finding that I have the need for support more and more as I am struggling to keep my sanity with all of the appointments, work, etc.  

Assembly_Reqd

Welcome!

We were overwhelmed with dr appointments and it seemed like something was always popping up "wrong" with our kid. It does get better with time.