Thursday, February 24, 2011

Purses and Paintings FOR a fund-raising update

Hello friends, family, and our local community!

We are forging ahead with fund-raising and have a new total (drum roll please......) $7150.00 !!!!!  Thank you all for your support.  These funds have allowed us to begin testing to see if Lila and Nora are an HLA (components within the stem cells) match, blood type match, etc.  These tests will be quite comprehensive and costly, but will tell us if we will be able to use Nora's cord blood to help Lila or not.  There are very detailed steps that need to be taken with CBR (cord blood registry) in order to even be allowed to have her blood released from the bank, of which we have begun this past week.  Movin' forward and excited to be one step closer to the treatment!

On another note, we have 9 purses and 9 paintings for sale!  Check them out...

#1 - $35 cream colored like #8 (sorry, bad photo), tan interior, 13"w (bottom) x 8"w (top) x 7 1/2"h
#2 - $35 durable upholstery weight material, , chocolate interior, 14"w x 7"h
#3 - $35 chocolate with butterflies (so cute), dark blue interior,15"w (bottom) x 10"w (top) x 8"h
#4 - $35 blues and creams, casual and simple, tan interior, 15"w (bottom) x 8"w (top) x 7"h
#5 - $40 silver and red with grey-ish interior, 14 1/2"w (bottom) x 12"w (top) x 8"h
#6 - $35 Paris here we come!  Pink and black with a clear button, black interior, smaller bag, 11 1/2"w (bottom) x 9"w (top) x 8 1/2"h
#7 - $30 light weight fabric with a satin top ribbon, same interior as main fabric, 12 1/2"w (bottom) x 9"w (top) x 9"h
#8 - $30 cream colored stripe, tan interior, 13"w (bottom) x 7"w (top) x 8"h
#9 - $35 fun fabric combo, chocolate interior, 15"w (bottom) x 11"w (top) x 7 1/2"h

#1 - The purple storm
#2 - The green movement
#3 - The lava slide
#4 - Green and Orange
#5 - Color explosion
#6 - The hidden ghost
#7 - Dancing colors
#8 - The sandstorm
#9 - Red October (you can thank Matt for this one :-)
ALL $25 and 11x14

Purses and paintings can either be purchased through the blog (using the Chipin button...specify with a little note to let us know what you would like), or by contacting me directly:  If you would like more detailed photos, drop me a note and I will get you whatever you need.


Friday, February 18, 2011


It has been snowing now since Tuesday evening, and at lake level (Lake Tahoe) they are supposed to have 5 - 7 feet by tomorrow morning!  So exciting, but we have not been out to play in it yet.

This is where having a child with a physical disability really puts a damper on the fun of being able to just run outside and play (summer or winter).  Anytime Lila wants to go outside and play we have to be with her the entire time.  We have to help her walk through the snow, get on a sled, etc., and in the spring and summer, we have to help her to get up and down the slide, balance on the swings, navigate her walker in the yard, etc.  If you are a parent you know that you don't always have time to stop making dinner or take a break from work to spend a couple of hours outside helping your child get around.  As a matter of fact, most parents send their kids outside to get a break!  Please don't take those free minutes for granted, and enjoy what you have,
 be it a child with special needs or a typical developing child.

That all being said, we are going outside this morning!  Lila is off school and Matt is off work because of the weather, so he is currently building a sled hill in the front yard!  Yay!  Lila's friend, Jaden, is coming over to sled with us and it will make for a fun morning and early afternoon.  Lila has been watching Matt out the window as he concocts his masterpiece, and she is getting so excited!

Lila was tired of sledding, so we moved onto snowman building, where her and Jaden had a blast!  They truly did make the bulk of this snowman :-)  Thank goodness it was steady enough to hold her up for the photo op!

She is so awesome ;-)  We are very lucky parents.

Tuesday, February 15, 2011

The boy without a cerebellum

A dear friend of Matt's Mom sent us this story, and it is so amazing that we have to share it with you all.

As I have written in earlier posts, the reason for Lila's lack of balance, low muscle tone, coordination, and speech is because her cerebellum is smaller than normal.  After watching this video of Chase Britton, we are even more positive about her future!  These kids are truly amazing :-)

On another note, I have completed another handful of purses, so get ready to shop!

Friday, February 11, 2011

Local Fund-raising Events

Lila always makes an impression on everyone, so much that we have had multiple people come to us and offer to hold a fund-raiser for her stem cell treatment.  I know that all of you are trying so hard to be part of these first couple of events, but wanted you to know that there will be many events happening between now and June.  I thought it might be good to share the run-down so that you can participate in later events and not feel so pressured to be part of everything.  Here goes:

March 5th, 4:00 p.m.
Yoga Loka Family Yoga Day
(details in the side bar on the blog)

March 19th, 9 a.m. - 1 p.m.
Dodgeball tournament
McQueen High School, Northwest Reno, Robb Drive
7 players, $240 per team
1st prize is cash, 2nd and 3rd prizes to be determined

March 31st, 5:30 p.m.
Sierra Tap House
$20 per person
Jeff Jones Band Playing
Food provided
Silent Auction and 50/50 raffle
Part of the liquor/beer sales for the evening will go directly to Lila

April 8th, 6:00 p.m.
Crossfit Initiative
Prototype Way
Friday Night Challenge
Come and do a crossfit workout while donating to a great cause :-)

Beginning to mid-May (date to be determined), morning
Kick-a-thon through Team Martial Arts Academy, Master John Bennett
European Fitness Center on South Virginia

End of May (date to be determined)
Huge garage sale in our church parking lot!  It will be a blast, and we are looking for any donations you may have.  

June 4th, early morning
Golf tournament
working on the logistics, but looking to have it at Red Hawk in Sparks.

Lastly, I posted two weeks ago that we had just passed the $4500 mark in our fund-raising venture.  I am proud to say that we have now passed the $6000 mark, only two weeks later!!

Stay tuned for further details on all of the fund-raising events we have scheduled.  Please feel free to join us whenever you can, and we thank you all for the amazing suggestions.  We couldn't have coordinated all of these events with you all!

Wednesday, February 9, 2011

The funny and exciting things Lila says...

As of a few months ago, Lila started saying some really funny things.  This is a stage that a 3 year old would hit, and so it is fun to see Lila making progress.

Lila playing chase with her sister.
On Superbowl Sunday we had just gotten through watching the half-time show, and Lila was sitting down to eat dinner.  Matt was hanging out with her and having a very deep conversation that went like so:
Matt..."Lila, was that your favorite half-time show you've ever seen?"
Lila....just looking at him intently...
Matt..."Oh wait, your favorite might have been where Janet Jackson ended the show by pulling out her nipple, huh?
Lila...."Yeah, she pulled out her tooth and Dr. Nicole fixed it!"  (As you all can probably figure out...#1 Lila has had her tooth pulled out, #2  Dr. Nicole is her dentist).
I was standing at the stove cooking and laughing so hard that I couldn't turn around, and she was so deadpan serious, which made it even more hilarious :-)

The storytelling part of Lila's brain seems to be affected, which is a characteristic of CP kids.  Therefore, we hear the same story all of the time, and she will never tell us how her day was at school, what she did in school, or even if she had a good day...until yesterday!  She got up from her nap and Matt was home, so he went upstairs to get her.  They were coming down the stairs and he was asking her what she did at school today.  Lila told him that she had cupcakes at school because it was Michael's birthday.  Most of the time she just makes something up, so he wasn't sure if he should have believe her or not, but this time it was true!  YAY!  Unfortunately she didn't tell him about her academics, but we'll take it :-)

Lila loves playing ball lately!
The last thing Lila said, which was very exciting, was last night when we were eating dinner (seems to be the right time for her to come up with good stuff).  What a great day it was yesterday!  We make the girls these alphabet potatoes, which they love.  Actually, they are Lila's favorite so she asks for them all of the time, and we always hope that she will get the letters correct before she eats them.  Nope, never works, until last night!  She looked at Matt while holding up a letter and said, " this is the letter M" (and it was!), then Matt asked her the next one and she got it right, and then the third one as well.  I think we were giving her too many high-5's because she started to get silly and was not paying attention any longer, not having success with the rest of the letters.  Nevertheless, it is so exciting to see the progress she has made, and we hope that the Stem Cell Treatment will give her even more confidence to make this type of a situation occur on a regular basis.

Thank you all for your support!!!!

Saturday, February 5, 2011

Thank you to Family First Chiropractic

On Wednesday morning I received a call from our Chiropractor/friend inviting me to have a booth at their vendor fair on Friday.  You may be thinking..."two days notice?".  Yes, but what a blessing that we were given the chance to raise money for Lila by selling purses and paintings.  So, I spent every waking hour of the next couple of days making purses and getting organized for the display.

Friday afternoon came very fast, but was an exciting time.  The evening was called the "Night of Indulgence" and was geared towards women, which was fun for everyone.   I met some exceptional women yesterday, of whom are living with similar daily challenges, and it was a blessing to have the opportunity to make those connections.  Thank you so very much to Family First Chiropractic!

During the vendor fair, we sold three purses and two paintings, along with some people giving random donations.  In total, we raised $232.00 for Lila's stem cell treatment.  YAY!  What a huge success for a spur of the moment event.

Thank you to all of the women we met yesterday, and for reaching out to us as a family.  Reno truly does have an amazing community full of love and support, for which we are grateful.

The response to Lila's artwork was great, and everybody's eyes lit up when Lila showed up and greeted them with a smile :-)  Lila's paintings will soon be displayed at the south office of Family First Chiropractic, so be on the look-out!

The Dot Purse-$40
As for the purses, I have a handful left and have attached photos below for sale. In the event that you have any questions, or would like further details on a specific purse, please drop me a note.  Likewise, if you don't see something that you love, I will have another installment in the very near future,  Keep checking back :-)

The greatest part about buying a purse is that all of the funds go directly to Lila for her stem cell treatment!  So, start shopping :-)
The Chocolate Wonder - $40
The Casual Stripe - $30
The Modern Texture - $40

Red, Gold, and Green - $40

The Sophisticated Stripe - $30

Tuesday, February 1, 2011

Answers to treatment questions...and a few random thoughts

My first random thought is about Lila and her balance.  Lila's progress is always slow and steady,  nevertheless, we have seen an increase in her motivation over the past 6 months.  She is becoming more daring and wanting to test her balance often.  Last week Lila was walking with her parallel bars in the living room, when she decided to balance without holding on... multiple times!  It was very exciting for Matt and I, and Lila too (oh, and I think Nora clapped for her on the side-lines)!  She has also been trying to stand up by herself in the middle of the room...not holding onto anything.  She immediately falls, however this is the focus that I see her having following her treatment.  She will finally have the chance to stand up to this CP "monster", which is something that seemed impossible a month ago.  Thank you!

Look at that focus!  She is trying so hard :-)

Since our post about Stem cell facts, we have gotten a few more great questions that I would like to answer.

The main question is...
How are the stem cells injected?
There are multiple ways that the stem cells can be administered.  The first, and most common, is via IV in the hand or foot.  This is safe and effective, although the doctors are concerned about losing too many stem cells before they actually get to the brain.  There are 8 systems that the stem cells have to pass through before entering the blood brain barrier.  This translates to the possibility that the stem cells will get "stuck" en-route before getting to the brain.  That all being said, there have been many success stories by using this method, and if it seems like the right thing to do for Lila as we get closer to the treatment, then we will certainly move forward!
The second method is a lumbar puncture.  This is VERY effective for spinal injuries, and also gets the blood to the brain directly through the spine.  This means that the cells do not have to pass through the 8 systems to get to the brain, in effect making best use of the cells that we have.
Lastly, a new method is being used where a catheter is placed directly into the carotid artery, which leads the cells directly into the brain, passing through the blood brain barrier before the cells are even injected.  There is promise in this method, however it is not 100% safe for children.  Little kids arteries are not always big enough for the catheter, which adds another risk.  This is the most effective method for CP patients, however we will not be taking this route for Lila.

The second question is.....
When are you planning to do the treatment for Lila?
Well, before this past week we weren't 100% sure.  Now that we have thought it through, the plan is to go down to Southern California the third week in June to meet with the doctors, and have the treatment the following day.  Lila is off school for four weeks between June and July, which will give her time to recover from the treatment and get used to the new happenings within her beautiful self.

Which doctors are we going to work with?
We are very close to making this decision.  Matt was feeling like we needed to talk to a few more parents with CP children who have gone through the treatment before moving forward.  We now have a list of 6 families to talk with, and will open those doors within the next few days.  Keep checking in for the final decision :-)