The Blog Hop

My dear friend Sarah has begun a blog hop in order to raise awareness about CP, stem cell therapy, and Lila.  The posts have already made me cry each day this week, and it has only just begun.

As Lila sits across the table from me right now, cutting scrapbook paper and doing an amazing job at it (if I must say so myself), I am continually in awe of her focus and straight lines.  Then the paper was about to slide off of the table, and I caught it in time...she looked at me with a smile and said, "Thank you".  She is an amazing little girl with so many skills that her neurologist never thought she would have.  She is driven to do what any of her typical peers are doing, as well as her 16 month old sister, which makes her gain new skills by the day.

Lila has been impacted with cerebral palsy since she was born, however we didn't know where it all stemmed from until this past November.  Lila's cerebellum is smaller than normal.  The cerebellum is at the base of the brain, top of the spine, and controls balance, coordination, speech, muscle tone, and emotions (there is probably more to this list, however these areas are where Lila is impacted most).   She has low muscle tone, so is "floppy", but has gained so much strength over the past couple of years.  She can not ambulate without support, so uses a walker outside of the house, and in the house we help her walk everywhere.  Lila is getting really good at walking while holding into one of our hands and using the other to grab the wall, table, or anything else she can find to help her balance.  She also finds great joy in standing against the couch and playing ball with her Dad or I, and sometimes if her sister will go and get the ball, she will let her play :-)  The stem cell treatment brings the hope that her cerebellum will start to grow at a more normal rate and allow her to gain skills that she struggles with today.

One thing that continually makes Lila happy is art!  This makes me happy as well, because I have a background in interior design, love to paint, as well as sew practical items (I have been making purses to sell in order to raise money for Lila's treatment).  As Lila paints, she laughs, receives sensory data from getting her hands all messy in the paint, and feels gratification through having and final product to be proud of.  Art is going to be a big part of her life, and I can't wait to see where she takes it!!!

Back to stem cells...upon the birth of our second child, we saved her cord blood in order to help Lila.  This is the route we would like to take for her treatment, so are working hard with Cord Blood Registry and the FDA to make this happen.  We will know within the next few weeks if Lila and her sister are a match, and then can move forward.  If this does not work out in our favor, we will either use Lila's own stem cells through her adipose fat or bone marrow, or donated umbilical cord cells.  All of the above have proven to be positive for kids with CP, in helping them to gain balance, strength, coordination, and speech.  Lila also has what are called choreoathetiod movements...involuntary movements in her head and arms.  These come out mostly when she is very excited and singing really loud, or extremely tired.  Parents that we have spoken to whom have taken their children already for stem cell treatments say that following the treatment the children have gained control of these movements allowing them to focus on more important things....walking :-)  I could go on and on!  In order not to bore you all, I have attached a few links that give us hope in Lila's journey.

http://www.stemcelltherapies.org/umresearch/cerebral-palsy.html (these are not the doctors we intend to use, but their site holds some very valuable info)

http://www.healing-arts.org/children/cp/cpstemcell.htm#New Cells (studies of stem cells altering specialized regions in the brain)

http://www.3news.co.nz/Video/60Minutes/tabid/371/articleID/89418/cat/46/Default.aspx#video (original video from post)

Thank you all for your support in spreading the word and raising awareness.  Your kindness fills my heart with joy :-)