Thursday, April 28, 2011

What else has Lila been up to?

potty training her babies...
Singing her heart out!
Bouncing on the trampoline with the big kids!

Matt and Nora went to Tucson, so Lila had free reign of all of the "beautifying" accessories in the house.  This means that she wore those sunglasses, necklace and shoes all weekend long because her sister wasn't there to take them off of her!  She also became very comfortable with putting on makeup...perfectly :-)

Makeup artist extraordinaire

Practicing walking with sticks

Wednesday, April 27, 2011

What has Lila been up to?

Happy belated Easter to you all!  We had a wonderful family weekend together, and the girls had fun with their Easter baskets and egg hunt.
Lila at the Easter egg hunt!

Nora at the egg hunt

We have also resumed horse back riding, and Lila is riding all by herself!  I can't believe how well she did today :-)  

Lastly, I have a couple of new handmade purses to share if anyone is interested (all proceeds go to Lila's treatment)....
medium purse - 15"w x 9"H x 10" opening - $40

bigger bag - 15"W x 13"H x 10" opening - $45

Saturday, April 23, 2011

Studies happening in the states

There are two clinical trials happening in the states with umbilical cord stem cells thus far.  One at the Medical college of Georgia and the other at Duke. (this makes reference to both studies)

What is a Clinical Trial?
A clinical trial is a research study designed to answer specific questions about a new treatment or a new way of using current treatments. Clinical trials are used to establish whether new treatments are safe and effective. It is very important to understand that the new treatment being tested is unproven. It may not be better than, or even as good as, existing treatments.

Some research studies are not trials. In some cases, new experimental treatments might be tried on a very small number of people before a clinical trial is started. Again, the new treatment being tested is unproven.
The fact that a procedure is experimental does not automatically mean that it is part of a research study or clinical trial. Experimental procedures should be made part of a formal research study at an early stage in order to determine whether they are safe and effective

Why is Lila not able to be part of a Clinical Trial in the US?
The down side to these studies is that they both require the child's own stem cells.  As most of you know, we have Lila's sisters stem cells stored for Lila's use.  I have spoken with both of these doctors piloting these studies, and they have both said that it will be at leas another two years before these studies are done, and then another two to four years before they have funding to begin a sibling to sibling trial.  So, if we waited for them to come along in the States, Lila would be anywhere from 10-12 years of age before we would even be able to take advantage of a trial that may (or may not) happen. (story about the Duke professor running the trial)
A child who was part of the study at Duke.  We have also talked personally with two other parents whose children participated in the Duke study, and have seen major improvements!  One child was going to be held back in Pre-K, recommended by his Mom, but the teacher said that his cognitive level had met and/or surpassed his peers, and he was more than ready for the regular kindergarten class following his treatment! (story about the Medical College of Georgia and the 1st FDA approved study using umbilical cord cells in some patients and a placebo in others)

Thursday, April 21, 2011

Bloodwork results are in...mostly

Well, we are almost there :-)  This has been a rough few weeks of working with labs, couriers, and Cord Blood Registry in Reno, Tucson, and Phoenix.  However, we only have two more tests to pass and we are smooth sailing!

First off, Lila and Nora are a blood type match...check!
Second, all of Nora's infectious disease testing came back normal...check!
Third, the girls HLA markers (stem cell components) need to match 3 out of 6...there are three tests and each test has two components...the lab overlooked one of the three tests on Nora, so what we do know as of now is that they match 2 of 4.  We will get more blood drawn on Nora on Saturday morning, and hopefully have the final answer next week.  Once this is all taken care of, we are going for the gold!

I have just sent the doctors an email asking if we can schedule for the week of June 13th, based on the test results we receive next week.  Plans are shaping up, and God is working his magic!  It was a lot of work getting to this point, and we are finally seeing results that we are so happy about.

So, keep the prayers coming in the upcoming weeks of final tests and scheduling.  Thank you!

Saturday, April 16, 2011

Drumroll please.....

Well, we started our fund-raising venture on January 1st with $300, and as of April 1st have met our initial goal of $20,000!  Amazing!  Our friends, family, and community have been unbelievably generous and supportive, all of which have led us to this cutting edge treatment for Lila.  Last Monday we had blood work done between the girls to find out if they are an HLA match and blood type match.  We hope to find out next week and be able to move forward with scheduling the treatment for mid-June.  We have also had a heavy metal test done on Lila, and have come to find that she does have heavy metals in her system.   This week our focus will be finding out what we need to do to rid her of these toxins.

Just as we have met our original goal, we are hoping for continued fund-raising success through the Fall.  The funds going forward will go towards a 3-week intensive therapy program that is recommended Lila have in the months following her treatment.  Cerebral Palsy kids who enter this program have been known to walk in with a walker and out with sticks.  Some kids even participate multiple times and are now walking unassisted from this amazing therapy experience.  The original founders of this program are in Michigan, so our first thought was that we would have to travel to the Midwest, nevertheless, we have found a location in the Bay Area that uses the "therasuit" method and is equally as successful.  Therefore, I am currently battling insurance as they say this is not covered for Lila, and it is $6700 out of pocket (not to mention travel and time off work).  So, we have another hurdle ahead of us that we certainly will overcome :-)
The program in the Bay:
The original founders of the Therasuit method of physical therapy:

Secondly, it is recommended by our physicians that Lila have a second treatment within a year, or so, of her initial procedure.  The doctor that we have spent the most time with thus far, says that the treatment cost would not vary from the first one.  Nevertheless, we would not have the cost of blood work between Nora and Lila ($2,000-$3,000), passports ($500), and the permit to get Nora's blood over the border ($800).  So, we would save a bit, but not as much as we would have hoped.  If we chose to use a different doctor, those numbers may vary.

That all being said, Matt and I have discussed at length our feelings about more treatments for Lila.  We are committed to two treatments, and only two.  The goal is to give her a better chance at life, not "fix her"!  So, as she gets older and is able to research for herself, she can make those decisions independently.

Lastly, you will all be glad to know that we have decided to do one fund-raiser a year for Lila's therapies which are not covered by insurance, and that will be the biggest and best dodgeball tournament Reno has ever seen!!!!  Over time, once Lila no longer needs the funds for intensive therapies, we will develop a foundation and give back to the special needs community.  We hope to aid families who are in the same position that we find ourselves in today.

Thank you for your continued support!!!!

Saturday, April 9, 2011

Great friends with hearts of gold

Our amazing friends here in Reno, Ty and Soupha Jones, have the biggest hearts I have ever seen, and tend to surround themselves with the same kinds of people.  Two years ago they opened a CrossFit gym ( locally, and are having much success.  Ty and Soupha reach out to everyone that crosses their path, and this has led to making a huge difference in so many people's lives, including ours!

A member of the gym, as well as a great friend of Ty and Soupha, Reid Weber has made a huge difference in Lila's life!  Reid won a fitness challenge that the CrossFit gym was holding, which presented him with $1300.  We are amazed to have learned that Reid has turned around and donated all of those fund to Lila's stem cell treatment!  Amazing kindness and love fills our hearts!!!!

Then David Salls, another Crossfit member, won the Dodgeball tournament challenge that Ty and Soupha had put together.  He won a free month at the gym, of which he also donated to Lila.  Crazy kindness pours out of that gym!!!  We love them all.
Lila was patiently awaiting her turn in the bounce house.  There were about 8 big kids in it at the time.  Rest assured that Lila spent at least a hour in there following the exit of the big kids :-)
To top that off, last night Ty and Soupha had a benefit for Lila at the gym (Friday Night Challenge), and raised $220.00!  There were lots of people there who participated in the workout challenge.  In the words of Matt..."My first thought was, this is going to be easy :-)"..."My second thought was, I don't know if I can finish this!".  Then the feelings began to interfere with my progress..."My first feeling was, Man I'm tired"..."My second feeling was, Holy Cow I'm dizzy!"..." My third feeling was, I'm going to puke!".  Nevertheless, Matt finished the task and had a great sense of accomplishment.  So, that's how the workout challenge went.  After the challenge, there was lots of chatting, eating, and drinking cold beer.  Couldn't have been a better night for Matt :-)  Just when he thought it was over, the ro-sham-bo contest began.  There was lots of laughter, friendly competition, and a wonderful winner (Ron Weber), who gave their winnings back to Lila (Reid's father, like son :-)!

One more thing...I can't forget Kathleen and Christian (Lila's friend who are 10 and 7 years old) who made at least 25 pens with flowers on top to sell for Lila's cause.  They are so adorable!  They sold enough to make $48 for Lila's treatment!  Amazing how the giving trickles down to the kids at the Crossfit gym!
Kathleen and Christian came over a few weeks ago to play, and were reading Lila books before great!
Well, if you live here in Reno, are looking to make a difference in your health, and are yearning to be part of an amazing group of people...I would recommend checking out the gym, meeting Ty and Soupha, and seeing for yourself what amazing people they are!  The greatest part about it is that their staff and members are equally as wonderful, and all really put themselves out there to help others :-)  We love you all and thank you for a fun night!
9410 Prototype Dr.  #12
Reno, NV

Thursday, April 7, 2011

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. (these are not the doctors we intend to use, but their site holds some very valuable info) Cells (studies of stem cells altering specialized regions in the brain)

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

Tuesday, April 5, 2011

Other fund raising events...

Selling purses and paintings has been a fun way to get out into the community and meet other families that are not in our general circle of friends, therapists, and teachers.  I have really enjoyed myself and sharing Lila's story with others.  This last vendor fair on Saturday was a blast, and also helped raise money for Lila's horseback riding program.  As far as selling purses and paintings, we raised $225 for Lila's stem cell treatment!  Yay!  This quilt that you see on the table was donated to us through one of Lila's babysitters.  She has a quilting connection and asked this woman to make a quilt to donate to Lila.  So nice of her to do, and people really seem to love it.  If any of you are interested in this quilt, it is $30, and has a turquoise colored pillow that goes with it for another $5.  It is beautiful and would make a lovely Christmas gift for a little girl (I say Christmas because there are little snowmen in one of the patterns).

I had also never posted photos of our fun yoga event at the beginning of March.  We had an amazing time under Kim's direction, and are happy to have had a yoga day with the family :-)

Lila decided to be the center of attention and sit front and center while Kim was talking
We started by singing this beautiful song about how everyone in the world is different, and everyone else's children were sitting on their yoga mats, except ours :-)
Kim had instructed the kids to be elephants and the parents to be trees, and the elephants were trying to knock down the fun!  The laughter in the space was infectious :-)

Sunday, April 3, 2011

Sierra Tap House event was a success!

Matt introducing the band
We have had two more fund raisers in the past three days, and two more to go next week.  On Thursday night we had our Sierra Tap House benefit for Lila with a silent auction, 50/50 raffle, The Jeff Jones Band, and lots of laughs.  We felt the support through and through, and Matt and I actually got the chance to sit down with good friends and finish a conversation.  It has been a while since we have socialized with anyone other than our children :-)

The silent auction was a blast, and full of unique and fun items.  We had three beautiful photography pieces, an acrylic on canvas painting, massages, day spa gift cards, one night stay at a Hotel/Casino in town, Cold Stone Creamery ice cream cake, Tattoo gift card, Henna blessing, mosaic class/herb markers/mosaic plaque, hand painted portrait, etc.  I know there were more but I am drawing a blank (seems to happen a lot lately :-).  Thank you to all that donated, as we raised $650 from the silent auction items!  Great success for Lila!

A little dancing went down...
I know that there are a few of you out there that are wondering...what is a 50/50 raffle?  Well, we had a dear friend sell raffle tickets throughout the evening, and at 8:30 we announced the winner...that winner won 50% of all of the money collected from the raffle, and the other 50% went to Lila's treatment.  Nevertheless, a woman named Aubrey (whom we hope to get the chance to hang out with again) won the raffle and gave it her $300 all back to Lila.  The generosity of our support system here in Reno is just amazing, and continues to surprise us at each and every turn.

Good friends supporting a great cause :-)
The Sierra Tap House was also donating 30% of the profits for the evening to Lila.  This total was $300, on top of all of the effort they put in to make this amazing evening happen.  Thank you guys so much!

Lastly,  there was a cover to get into the event, which brings our total for the evening to $2360!  Great successes...let's keep 'em going :-)  Wait, we are running on fumes right now so I didn't really mean that.  We have two more fund raisers this coming week and then are truly looking forward to a break in the action to be able to get back to spending time with the girls and focusing on what's important.  The weather is getting nicer, so we are hoping to get some bike rides in next week, and maybe even a couple of afternoons at the park.  These are the little things that we haven't done together in quite sometime.   So here's to Spring and soaking in some sunshine!

I know you all are reading this post and wondering what the total is for fund-raising to date.  I would really like to update this number at the end of this upcoming week.  We have two more fundraisers on Thursday and Friday, and then will take a break.  So, keep your eye out for a post next weekend with the total to date!  The suspense is killing me too :-)