Wednesday, December 19, 2012


Lillian resumed school yesterday afternoon.  I am taking her to yet a different school after school hours to meet privately with a teacher twice a week.  The room she is in is pretty small and the teacher assures me she is sanitizing the room to keep down the germ factor.  Lillian seemed comfortable with her new teacher and I liked her as well.

CVS offered us a very small settlement, which I accepted.  It's not even a slap on the wrist in my opinion, but I'm ready for it to be over.  Nothing that has happened has changed anything about their procedures or even led me to believe they even care.  Of course, it will be a few weeks before that is given to us and I will have paperwork to sign.  It became quite clear to me after my last talk with the manager that he is only going to defend his company...a company supposedly in the  business of serving people but really only caring about the money they make.  I should not be surprised that my daughter's life is not important to them.  Hard to keep a soft heart when things like this tend to make you want to shut down. 

She is all bound up in mucous again.  Lots of coughing and sneezing today.  Antibiotics on board...hopefully she won't get too bad this time. 

Sunday, December 16, 2012

Difficult time of year

Sometimes I wonder if I will always be so emotional around this time of year.  Does anyone else struggle right now?   I attribute it mostly to the fact that this was the time of year when our life changed so drastically.  It's like I'm on an emotional roller coaster that has no end.  I continually remind myself of all the good things that we experience and the fact that our Lillian is with us.  So much suffering as of late. 

The CVS saga drags on.  I contacted corporate CVS in regards to her overdose, rather I TRIED to contact corporate.  All I got was a customer service rep who promised a call from regional or district management in one business day.  That was on December 4th.  I emailed  them twice and still no response and I called again  on the 12th and get yet another phone call from the in store pharmacy manager.  I'm trying hard to continue to be civil, but on this last conversation he all but left me feeling like it was my fault that they filled her prescription wrong.  Really, it should not surprise me because A) it's not their child B) they only care about their business.  He informed me that the dose they gave her was not necessarily a dose that couldn't be ordered for her anyway. 

After seeing the pediatrician Friday, he told us that the dose and her age alone should have been a red flag to the pharmacist.  He said that dose was a sedation level dose and it was certainly the cause of all her excessive falls. He also said that given her particular health history is was extra hard on Lillian. 

Mentally exhausted and in constant prayer for peace. 

Sunday, December 9, 2012

This week...

well, what can I has been filled with awesome blessings.

 It has also been filled with a sick Lillian.  I got her antibiotic started later than I intended and by Wednesday night I was doing breathing treatments every three and a half hours through the night.  Dreadful.  She'd been on the meds by then for three days.  She was much better on Friday, but she's still got quite a lot of snot.  I have a couple nights in a row like that and my brain is just fried.  Her feedings weren't going well either.  Thank goodness she's trending up.