Sunday, May 29, 2011

Treatment and Therapy Sessions

Happy Memorial Day weekend to you all!  Hope you are all enjoying some nice weather and a fun beginning to the Spring/Summer season!  We sit here looking out the window watching the snow fall here in Reno.  Yes, this week this looks bleak as well, as we head into June, but I guess the river and lakes will be higher than usual this year :-)

On the fundraising front, we have a few things going on throughout the summer (check the side bar on the blog), and have currently raised $26,000 for Lila's treatments and therapies.  We are finding that there were some hidden costs, go figure, with the first treatment, but are still hoping to end up spending around $20,000.   The therapy program that we intend to use costs $7400 and is a four week program based out of LA.  The program is through Polfit, and has been known to show great success in kids with cerebral palsy.  There is another program that we had been considering early on in Michigan called Pediatric Fitness Center and we have just found out that there may be a way to get insurance to cover a bit of their services.  This week we are planning to take a deeper look into this, and maybe reconsider heading to the Midwest for a three week intensive physical program.  All of that said, by the end of the week we should have a therapy program in place.

As you can tell by the numbers, we do not quite have enough funding for this intensive therapy program as of yet, but they are all booked through August already.  So, we will plan to attend the program late summer/early fall, and figure out the funds as the time nears.  We do have some floating finds out there through match programs, and the like, but just have not seen them in our account as of yet.  It is all promising, and we have no doubt that Lila will have the funds by the time her program begins...and will see great benefit from attending a lengthy therapy session!

On the Lila front, she is doing quite well.  Her speech therapist just told us that Lila is meeting and exceeding her goals so fast, that she has to write new goals this week for her.  Very exciting!  The vocabulary is all there, it is just that her processing is a bit slower than average.  So, when she is asked a question she needs a few extra seconds to get the words all together.  Some people don't give her the chance to get the words out, so they think that her speech is significantly delayed...not the case :-)  When we are at home, Lila will tell us a very very long story using all kinds of words that we can't believe she strings together.  This is without prompting, which means that she was able to take the time to put the words together before telling us the story, seeming as though she isn't delayed much at all.  Just like this evening when she said, "I need more ketchup please, Maria"!  So funny...she is one amazing little girl!

Sunday, May 22, 2011

Lila turns 5!

What a fun week we have had!  Lila turned 5 this week and felt so loved by all of her friends.  We had a birthday party for her yesterday at the park...great weather...yummy cupcakes...and a fun book exchange!

Cupcake face!

This year may potentially be the biggest year of Lila's life!  We hope to see many positive changes that she will come to love, and have the hope for a brighter future.  She deserves this more than anyone could know, and we will work hard to give those stem cells what they need following her treatment next month :-)

Lila , Cece,and Kate coming to get cupcakes!


All of the kids brought their bikes, and Lila loved riding with her friends!
We love our great friends here in Reno
Lila's dear friend Hailey :-)
Was Nora riding her bike?  Nope, just wearing the helmet...all day :-)

Monday, May 2, 2011

The Lord works in mysterious ways

Two and a half years ago, Matt and I received some news that would change our lives forever.  We found out that we were pregnant with our second child.  We had just gone through many discussions at great length about how we didn't think we could do it again, how we were concerned that having another child would take away from all of the care and attention that Lila needs, and how we didn't have another ounce of energy in our bodies to give to another child.  Our final decision was that we would not be having another child.  Until God intervened and over rode our decision!  Just goes to show that you can't plan anything in life :-)


God rocked our world!  We cried a ton (for about a month), started frantically making appointments with the genetic specialists at Stanford (because we still did not know exactly what was wrong with Lila at that point), and even called our trusted friend/Pastor, Gary, to help us turn around our thought process into a positive.  Gary laughed at us!  He made us realize that this is a blessing, and there will be nothing but good that comes out of having this child.  Lila and this new addition would teach each other so much throughout life, and learn to lean on one another for support and love.  Lila would teach this little one that not everyone is the same, and some need more help than others, meanwhile this little one would go through life being more excepting of others and will see the world much differently than other children.


As Matt and I began to accept the good in this situation, we jumped into researching stem cells and cord blood banking.  I had not gotten 100% into the research of what the stem cells could do to help Lila, but I knew the promise was there.  Matt and I talked at length and decided that this was something we needed to do, and knew that this was the light in this pregnancy.  With the help of our loved ones, church family, and friends, we were able to save the baby's cord blood for Lila.


Fast forward....we now have this beautiful little girl, Nora, who is 17 months old and has a vocabulary like no other.  She learns so much from Lila, and Lila is learning to have more patience, to eat with a spoon and fork by herself (because Nora is already doing it), and to use her words more readily without prompting (thanks to Nora's modeling).  So, Nora has been an amazing blessing to our wonderful family, and we now know that we were making the wrong decision by planning on only having Lila.


Now that we have the cells, what are we waiting for?....A few months after Nora's birth, I began researching everything there is to know about stem cells, what types there are, where they come from, what they do in the body, what types of studies have been done, etc.  Over the course of a year, we have now researched the risks vs. benefits, spoken with doctors in many different countries performing stem cell treatments, spoken with 6 different families who have already done stem cell treatments with their children, and have become a part of multiple on-line support groups surrounding alternative therapies for our children with CP.  Each and every one of these elements has led us to the decision to give Lila a stem cell treatment using Nora's stem cells.


Over the past four months we have gone through a whole slew of blood work between the girls, paperwork with Cord Blood Registry, and now need to rid Lila's system of heavy metals.  It has been a long, exhausting four months, but all worth it!!!!  BECAUSE......


All of this hard work, and belief that there was a reason Nora came into our lives, has come to fruition....Lila and Nora are a blood type match  AND  HLA match!!!!   WWWoohhooooo!  We couldn't be happier and are moving forward already with treatment plans.  We have just spoken with Dr.Lopez in San Diego (Regenerative Medicine Institute), who works with a team of 18 doctors just over the border in Mexico, and are planning to schedule the treatment for mid-June.  Yes, that is not more than 7 weeks away, but it looks like it can be done!
Thanks for all of the prayers and support.  This is only the first step.  Once the we return from the treatment, we will have lots of therapies to do every day in order to allow the stem cells to work at their optimal level.  Baby steps :-)

Sunday, May 1, 2011

What a weekend!

As you all know, friends of ours (John and Carla Bennett) held a fund-raiser for Lila yesterday.  They own a martial arts studio in Reno and had a "break-a-thon", where all of their members participated by breaking boards using the force of their bodies.  Lila even had the opportunity to break a board!

video
(so sorry this video is horizontal...Matt and I can't seem to figure out how to rotate it)

Once again, the turn out was overwhelming, bringing out many emotions and much thankfulness.  Unfortunately, Lila was under the weather but pulled through and wanted to stay the entire time.  She enjoyed the positive energy in the room, all of the laughter and support, and the friendliness of all of the families around her.  John and Carla have truly put together an amazing community there at the studio, who all seem to be of the same mindset embracing our little girl with the love and kindness, as if the have all known her forever.
The supporters from Team Martial Arts Reno
There was a 10 year old boy named Kevin who approached Matt and gave Lila a high-5.  He then said that he had $5 to give to her and that he sure hoped that it would help (Matt teared up again :-).  The generosity and support felt from this group was unspeakable.  At church this morning, John said that they had raised $1800 for Lila and still were not done collecting all of the funds.  Oh my goodness...cut to Maria picking her chin up off of the floor...Matt and I are shocked and overwhelmed.  That is amazing, and speaks to the kind of community we have here in Reno :-)

Lastly, Matt had gotten photos of two little girls from church that participated and I wanted to share their photos as well....

Nyka
video

CeCe