a month or so.

I'm not sure where to start.  And I'm not sure that I even want to write it down.  But to ignore it doesn't see right either.  "It" being the last month or so of life for the McGinity family.  It has had its blessings - many blessings.  But deep down it just feels really yucky.

On Wednesday morning - August 29 - Lillie woke-up fine.  While we were sitting on the back stairs putting on our shoes to run out the door to our last week of work/school in Chapel Hill... Lillie mentioned her feet hurt.  It didn't even register with me - until I was sitting in the doctor's office with a screaming 3 year old who was becoming more swollen before my eyes.  We got a call from school, the teacher timidly said, "Lillie cannot walk."  What the heck does that mean?  Basically, Lillie was in so much pain that she refused to walk.  First, we made a stop by our pediatricians and then by the time we got to the ER she could not be moved without excruciating pain.  Her fever was over 104.  Brad and I were terrified.

Blessings.  Our pediatrician - the one we all love - was there over his lunch hour and came into the room to share his thoughts about what this could be and what we should do.  He was right.  By just looking at her - he knew what this was.  The ER doctor - who we were thankful for twice over (can you believe he was there both times we came through the pediatric ER!)- thought he knew what it was right off the bat too, and he had actually had the disease as a child.  That is AMAZING because it is rare.  Many children go undiagnosed for weeks.  I'm thankful for these doctors and the outstanding medical care we have available right here in the Triangle.  And I was so thankful for a perfectly healthy doctor reassuring me that he recovered from this very same disease and my baby would too.

That didn't stop them from coming in and saying things like, "Now we are going to test her for Leukemia".  It was an agonizing few hours before the doctors confirmed the diagnosis.  And then the onset of viewers - medical students, residents, fellows - came to see it for themselves.

Lillie was diagnosed with Henoch - Schonlein Purpura, a childhood vasculitis.  She was admitted to the hospital that night - she had a fever which didn't fit with the diagnosis - but everyone is confident it is HSP.  Lillie improved over the next two days and we were home for the weekend.

The weird thing about HSP is it attacks different parts of the body at different times.  Lillie's joints in her ankles seem to have been first on the hit list.  She had spots everywhere - which were broken blood vessels/little bruises.  Her knees were next.  Then on Friday night she began to complain of stomach pain - something we where told to expect.  We couldn't really get her to eat on Saturday - so we went back to the ER.  We were re-admitted to the hospital - enjoyed a 2am ultrasound.  Lillie received some medicine and fluids which calmed her stomach, and she was back to eating the next day.

It was weird.  The hospital - the nurses - all seemed familiar the second time there.  It is a kind of comfort I never wanted to know.  Since we left the hospital for the second time, Lillie has continued to improve.  My prayer is that we have seen the end of HSP.  For the next few months we continue to go back to the doctor for regular checks of Lillie's kidney function.  If HSP attacks a child's kidney's it can cause long-term damage.  We pray that Lillie's kidney's remain untouched by this disease.  And as a mama, I pray that she doesn't remember the pain.  I know it is something I will never forget.