Lucia B. - Quilt Finished in 2008

Born: November 23, 2004

Illness: Epilepsy, microcephapely, suspected genetic syndrome, but after exhaustive testing, none detected.  Globally delayed, no speach.

A Thank You From Lucia's Family!

November 11, 2008

I just received the quilt today and was in tears when I laid it out!  All of the squares are just beautiful and I especially appreciate seeing everyone's name and where they are from.  I know Lucy will just love cuddling in it, she loves to cuddle!!  I laid it out on the floor to look at it and show it to her, she just crawled onto it and laid her head down on it...it was so sweet!  It is so touching to me that all of you care so much for these special little kiddos, things like this are such a blessing in our lives.  They uplift and you can just feel the love that went into it.  We are truly blessed by everyone who put their hard work and love into it!  The border is beautiful...it must have taken so long to finish it so beautifully!  Thank you so much for all of your time and dedication to these kids.  You love and kindheartedness is so appreciated and such a blessing! 

I will get a picture of Lucy with it in the next few days.  We all just love it, especially Lucy!!!

Thanks again and God Bless,

Cindy and Lucia

Lucia's Story

Written by Lucia's mom in May 2008

Lucy was born on November 23, 2004, on a beautiful rainy and snowy night.  We had so wanted to give our older daughter a sibling, and had been so thrilled to find out we were pregnant with Lucy in March of 2004.  Just seven weeks after finding out about my pregnancy, I found out my very best friend, my mother, had terminal cancer and had only 4 months remaining. I cared for her at home until her death in September of 2004.  During that time, we found out that we were having a girl.  We wanted my mother to know before her death and share in our joy.  The birth was beautiful, natural, and very fast.  It could not have been better.  Lucy was right on time, but definitely wasting no time getting here. 

Even though to us she seemed beautiful and perfect, we were told she was microcephalic and were warned that it was sometimes linked with developmental delay.  She was, however, well-proportioned, and her APGAR scores were great, so doctors were not too concerned.  Months following her birth, we slowly noticed she was not reaching her milestones, it was blamed on her small stature, a "wait and watch" attitude was encouraged.  At 13 months she had her first seizure in connection with RSV and pneumonia.  She was placed in PICU where we were told she was the sickest person in the hospital and we nearly lost her three times.  The seizure was blamed on the infection and an autoimmune response that her pancreas had to the infection.  She was placed on phenobarbitol and we were told she would remain on that for six months and if she remained seizure-free, she would be weaned from the medication.  After a month in PICU, we returned home to begin intensive speech, PT, and OT therapies, since her delays could no longer be ignored.  After six months and no seizures, we began the weaning process off phenobarb, and she had her second seizure, this time with a bladder infection. 

Since that time, the seizures have been numerous, with infection.  Ear tubes have been put in to prevent ear infection, specialists consulted with regarding the frequent bladder infections.  Everytime Lucy is sick, seizures are present.  We have sought the expert advise of Mayo Clinic and are presently under their care.  We are told Lucy will likey suffer with seizures her entire life.  She is currently functioning at approximatly the skill level of that of a one-year old.  She is approximately the same size as well, only weighing 22lbs at three and a half years old. 

Despite all her struggles, the medications, the doctor appointments, Lucy is PURE JOY.  She loves to cuddle, loves pat-a-cake, absolutely loves to ride her horse.  She always finds something to smile about.  She is a true blessing to us and I am just so honored to be her mother.