Monday, February 25, 2013


Lillian is doing pretty well.  Still trying to keep her out of large crowds.  Her school PT visited her last week in the classroom and was so pleased with how well she is doing.  It tickles me to death to hear such positive feedback. 

Her ST has been cut to once a week due to insurance issues.  This is something I will be appealing. 

She is doing multiple breathing treatments a day plus her vest treatment.  I am so looking forward to warmer weather so we can get back to a little more normal life.  I heard the weather is supposed to turn ick again this week. 

Bring on spring!

Tuesday, February 12, 2013

Tonight's events got me to thinking

We were honored to attend the Pregnancy Care Center's yearly banquet/fundraiser.  What an amazing organization.  It made me think about life.  LIFE.  It made me remember each of my precious blessings.  It especially made me consider that was the day after we'd been given all the information about our precious Lillian.  All of the doomsday reports of her poor health and unlikely survival. Hearing all that distressing prognosis left us spinning.  When the doctor said she would be categorized as moderately to severely mentally retarded, I don't think it hit me quite like when he said she would likely not survive and we should tell our other children immediately.  It was so much more than I could comprehend.  The next day as he came by her bedside and asked me if we were still all set with the "plan" to move ahead with a trach, I remember saying, yes of course...IF they were sure that what we really needed for her.  He stopped and said, well....there is one option we didn't discuss.  I remember looking at him quizzically, wondering what other option there might be. His next response , well, we could do nothing at all.  That would have been a death sentence for our angel.  I immediately shook my head.  No way. Our daughter was not hopeless, she had a chance at living and we would choose that for her.  It is a strange thing to think I could have made the choice to turn off my daughter's life support and let her go. 

So thankful God continues to sustain her life and bring us joy and love each and every day. 

Thursday, February 7, 2013

Remember that hat?

The one the lady in the pulmo office said she would make Lillian?  It came today...Isn't it just adorable?? Such a sweet thing for that woman to do. 

Lillian has been doing pretty well over all.  I believe the key was the antibiotics.  I gave it all month last month as regular dosing because she was getting sick.  Her PT and teacher both were sick this week so she missed those things, but we are making up PT tomorrow.  Our initial appeal for her ST was denied, so now I will appeal and have to go to court and plead my case for a judge.