Tuesday, August 30, 2011

Day 27 & 28

I wrote this email to the parents at Lila and Nora's daycare, as they have had a "coin war" to raise money for Lila.  I assume that most of them do not know Lila's story, so I thought I would send out a thank you and a little info about Lila.  After writing it, I thought some of you might be interested in reading it as well, so I have attached it below.

For those of you that do not know Lila's background, I will give a little brief below (sorry if it's a bit long :-):
Lila is 5 1/2 years old and has cerebral palsy (CP).  Her CP is quite mild, but definitely needs attention.  In her first year of life, she looked like a typical child, however was not meeting milestones appropriately, and had failure to thrive and stunted growth.  Her growth issues were centered around her allergies and not getting the nutrition she needed early on in life, which we began to correct at 10 months.  We started her on a gluten free/dairy free diet at 10 months, and she gained 1 pound a month for 10 months straight!  We were hoping that in changing her diet, we would see some of these developmental delays straighten themselves out as well, which was not the case.

By the age of 3, Lila had 2 MRI's, 2 Eeg's, a nerve conduction test, testing for every syndrome out there, as well as genetic testing down to the chromosome micro-array.  Lila sailed through each and every test with normal results, which left us dumbfounded; she was a mystery to all doctors involved.  

At the age of 4 1/2, we had our yearly neurology appointment.  Traditionally, we leave these appointments with no new information, and make an appointment for the following year just to have someone checking on her from a neurologic base point.   Well, this past year I talked to the doctor about a stem cell treatment for Lila, with the possibility of using her sister's cord blood.  This prompted him to take a deeper look into Lila's file and see if he missed anything...sure enough, he did!  On her 2nd MRI, which was done when she was 2 1/2 years old, showed that her cerebellum was smaller than normal.  We spent the two years following that MRI searching and searching for the reasoning behind Lila's delays, and what we could do to help her.  UUgghhh.  This was bitter sweet because we were angry at the oversight, but so glad to have that information and know for a fact now that she does have cerebral palsy.  We were now able to move forward in helping her to grow and develop.
(thought the info below might be helpful before I go on...)

What is cerebral palsy?

Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.[4][5] Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception and other sight-based perceptual problems, communication ability, and sometimes even cognition.

What is the cerebellum?
The cerebellum (Latin for little brain) is a region of the brain that plays an important role in motor control. It is also involved in some cognitive functions such asattention and language, and probably in some emotional functions such as regulating fear and pleasure responses.  Its movement-related functions are the most clearly understood, however. The cerebellum does not initiate movement, but it contributes to coordination, precision, and accurate timing. It receives input from sensory systems and from other parts of the brain and spinal cord, and integrates these inputs to fine tune motor activity.  Because of this fine-tuning function,damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibriumposture, and motor learning.

Our next step was to become connected with many parents across the Country who have participated in intensive physical therapy programs, as well as stem cell treatments.  This allowed us to make an educated decision for Lila, now that we actually knew where her core issues were coming from.  

All of the above being said, we began fund-raising for Lila's treatments this past January and have been overwhelmed with the generosity and love out there for Lila.  By March 1st, we had raised $10,000, and by mid-April we had raised $20,000.  This allowed us to have a stem cell treatment for her at the beginning of August.  We are already seeing changes in her cognitive processing, as well as her balance and control.  We have continued fund raising throughout this year, which has now allowed us to give Lila the opportunity to attend an intensive physical therapy program in LA.  We leave this Friday and will be gone for the entire month of September (Matt and I will be back intermittently)!  As the year progresses, we will have a few more fundraisers in order to raise money for her next stem cell treatment...another $20,000 (within the next 12-18 months).  

We can not thank you all enough for sharing in the joy of Lila and everything you will have helped her to accomplish, just by getting your families involved :-)

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