Happy Thanksgiving!!!! Black Friday sale on all hand sewn items...15% OFF!!!!

yummy dessert with cookies!

We hope you all have had a wonderful Thanksgiving, as we all have so much to be thankful for!  We shared our afternoon with good friends and good food, which is such a wonderful combination :-)

Since our talks throughout lunch/dessert, I have decided to have a Black Friday Sale of my own!!!  I have just uploaded all of the bags I have in stock, under the "PURSES FOR SALE TAB" (including IPad covers, cosmetic bags, zipper wristlets, and an IPad mini/nook cover).  Check out the entire new selection, and email me at the address in the instructions on the page.  I will send all orders out via UPS next Friday so you will all have them by Christmas.  If you are local, I will be delivering bags this coming Thursday, and one more time before the Holidays.  Please feel free to ask any questions...dimensions, craftsmanship, ideas, etc.  Also, these are all of the goods that I plan to make before the Holidays, so grab them before someone else does :-)

cabbage, apple, broccoli, carrot slaw..mmmmm

Our December is looking to be busy but fun:-)  We have two Christmas parties early December, I have a work trip to LA, Grandma is coming for a visit mid-December, we are hosting our CP support group meeting on December 14th (which will be so much fun to celebrate with our friends!), we will spend the Holidays together, and then head to LA for intensive physical therapy on December 27th through January 17th.

One more thing that we have to be very grateful for is the possibility, which may be there for us next April, to use Nora's cord blood stem cells for Lila's benefit!  It is looking very promising, but I am not completely convinced.  There are still some hoops to jump through, so your prayers would be welcomed :-)

Hope you all have a fabulous Holiday Season!

Now go and make some cookies :-)

cookies are in the oven!

Soupha and the kids making cookies

All of the kids coloring together

AAAAHHHH, these cookies were sooo good!  Had so much fun making them, and even more fun eating them :-)

Lila so badly wanted to have a parade with everyone, so here is Matt leading the troops through the house :-)  It was hilarious!

I have finally returned!

UUgghhh, we have had such a long summer, that I decided to take the past couple of weeks (that might have actually not been so hectic) to catch up on forgotten items on my list.  The blog being one of them!

So, what has happened in the Barber Family from June until now?  A ton...and all great changes!  First off, our short sale was final in September, but we moved in July.  We moved really far from our old house...6 minutes away, to Verdi, NV.  Verdi sits on the border of California and Nevada, and is surrounded by mountains.  This is the sort of town that has a "market", post office and elementary school :-)  We LOVE it!  One of our biggest challenges in moving was to decide where Lila can thrive best, while also selecting an area that we, our family, can enjoy our time together.  FOUND IT!  We live 5 houses from the Truckee river, have a community pool, and tons of kids in our neighborhood.  Lila takes the bus every morning, and loves seeing her friends at the bus stop.  Nora enjoys daily bike rides with her friends on our block, and climbing the massive rocks near the bus stop.  The girls are so happy here, and so are we :-)

School...Lila attends the Verdi Elementary school where there are 200 kids (vs. the 600 kids at her two previous schools).  They all know her, as does the staff, and she is just skyrocketing in her academics!  Because of the smaller work load on all of the therapists and resource teacher, Lila gets lots of time being taught at her level, leading to her knowing all of her letter sounds and sounding out words, understanding math concepts (although the answer may not always be correct), and interacting with her peers during each and every activity.  She still LOVES music and art, but gives all other subjects her all and it is really showing :-)  Her speech has grown a lot in the past six months, and she has such a funny sense of humor.

Nora...still attending Goddard School three days a week, and is working at a level higher than her peers.  This kid continues to amaze us, and also pushes our limits like no other!  It is hard to have a child that is smarter than us....hahahah!  Nevertheless, she is always kind to her friends and very funny.  She is still in swimming class, and has taken to it with ease, so we may be up for a switch to gymnastics soon.  Nora is very excited about this, but first has to fill her chart that is working on some behavioral issues at bedtimes.  The chart has been active for about 6 weeks now, and we have only gotten it filled 2/3rds of the way...boy is she stubborn (a trait that will drive Mom and Dad crazy, but likely pay off in the long run).

Matt and I...we are happy to be done with the banks, have moved to a smaller one-story house, and are enjoying spending time outside with the girls.  It is getting colder, so that outside time is limited, but we have been out a lot lately.  Matt is running three jobs with Gallagher Construction, which is quite stressful for him.  This will settle down come the end of the year.  I am sewing bags, doing vendor shows, managing all of Lila's appointments and therapies, filling out the paperwork to start our non-profit (Change in Motion-supporting alternative treatments and therapies for children with cerebral palsy), coordinating a three week intensive physical therapy session for December and January, and looking to Lila's next stem cell treatment (more about this later).  Oh, and one more thing...I have been taking small design jobs to still have a piece of myself, tap into that creativity that I so miss, and will likely be designing a French cafe/bistro in Newport Beach this winter...should be fun!

So, we are busy, but well.  I just wanted to get this post out to everyone, as I am sorry to have fallen off of the planet for a little while :-)  We think of you all often, and hope that you too are enjoying this beautiful Fall weather.  Happy Halloween to you all!

Speech, speech, speech....

FINALLY!  YAY! 

Most of you know that I presented a speech at the end of March, locally with Tedx Reno.  It has taken a couple of months to get the editing done for all of the speakers, and here it is!!!!  I hope you all enjoy it, and I encourage you to share it if you feel so compelled :-)

http://www.youtube.com/watch?v=ADwqlgz4VSU&feature=youtu.be

If this link doesn't work for you, copy and paste it into your browser.

Also, there is one correction to the speech...at the beginning, I was talking about weighing Lila for our journal records; in fact, she was actually 13lbs 1 oz/ 8 months, 13 lbs 2 oz/ 9 months, and 13 lbs 1 oz/10 months.  Not there is a huge difference from the actual speech, but I was kicking myself after watching it today.  I didn't even notice that I did that the day of the speech...hahaha!

ENJOY!!

Saturday mornings...

When was the last time you woke up on a Saturday morning and said, "What do you want to do today?".  It sure has been a LONG time for us.  How do we all get so busy?  Is it worth it?  Are we missing the days as they pass by because we are thinking of what we have to do today, tomorrow, and next week?  These are questions I have been asking myself, as I seem to have missed the entire first quarter of this year.

Lila turned 7 on May 16th!

Now that we have hit June, I seem to have a grasp on things, but only because I have let other tasks go.  In May, I was very stressed because all of the plans I had for the purses seemed to be more of a struggle than anticipated.  I always know that if something is not falling into place, after many hurdles jumped, that maybe something isn't right with the plan.  Sure enough...myself, and the company that I was working with for manufacturing, have decided that they are not set up for small detailed production, and we will end our work together once they are done with this last batch of purses.  This has put a halt on me finding the right business to help me start the non-profit as well.  What I have learned by taking this little break is that I am missing the creative side to making the purses.  I need to get my hands dirty again, try new patterns, and enjoy touching and matching fabrics.  I am excited about this, and will approach it all with a fresh outlook :-)  As for the purse website, I am going to talk with someone this week about getting that started, and the costs associated.  The blog doesn't showcase them very well, so I hope this will help ease the navigation for incoming purse buyers.

As for the rest of the family, Matt and I were able to get some time away from the girls at the beginning of the month, and the girls got to spend time with their Grandma and Mor Mor, which they LOVED!  We felt like we were dating again...so much fun, and way overdue!

Lila turned 7 on May 16th, and the next day caught a very harsh virus that put her down for 10 days, poor girl.  We are on the upswing now :-)  All of that aside, Lila has grown 2 inches in the past year, and keeps on eating like a garbage disposal.  I think we are in for a couple of more inches in no time!  She is also changing a bit.  She has a bit more energy in the afternoons when I pick her up from school, leading to shorter naps...yay!  Also the shape of her nose has changed...hahahah!  Matt and I both noticed this over the past few days.  So funny, but she is looking more and more like a Barber :-)

We put the house on the market for short sale on May 22nd, and accepted an offer on the 24th!  Please pray that the lender accepts the offer and we can all move ahead with our lives.  The same night we were getting the offer, we passed a house in Verdi, NV (the town we were looking to move to), and this man was putting a for rent sign out in front as we were passing.  Matt introduced himself, thy invited us in, and the house couldn't be more perfect for our family (and Lila in particular)!  Hardwood floors, as Lila is still crawling a bit and can use her canes more successfully on hard surface flooring, three bedroom 2 bath, one story, in the Verdi school zone, 10 minutes closer to Matt's work, 1 mile from school, and the right price.  It is five houses from the river, and has an outdoor pool for those 100 degree days!  Amazing how God works :-)  We are first in line for the rental, although have not signed any official papers yet.  We'll keep you all posted!

Lila had a Mother's Day performance on May 17th and it just melted my heart.  Here are some videos and photos...

Lila waiting for the performance to begin

 Lila couldn't wait to get started.  The teacher had been telling me for weeks that she was the best singer in the class!

Nora sitting with Lila's best friend Cassidy

Lastly, Lila graduates kindergarten on Wednesday!  We are so happy for her.  The class has a singing performance on Monday morning, so I will try to post some videos from that this upcoming week.  She is very excited for it, as are we.  Matt's birthday is Monday, and he couldn't ask for a more special gift!

After school gets out, I am hoping Lila will begin working with a tutor throughout June on her academics heading into first grade.  She has regressed a bit since Christmas, and there are many reasons for this, however we need to have her up and ready for August 12th, and I know she can rise to the challenge :)  For the entire month of July she will attend intensive PT here in town...four days a week, 4 1/2 hour days.  We are not going to LA this summer for therapy so that we can move and get Lila situated here before school starts.  Hard decision, but she will still get a lot from Lesley here locally throughout July.

Other than that, wish us luck/pray for us that the house offer goes through and we have no major hurdles delaying the sale, enjoy the smile from Lila above, and Happy June to you all!

since the last post...

 I know I have been slacking on posting, but have just had a lot on my plate.  Here is what has transpired over the past three weeks...
--I have spoken at a local writing group about blogging.
--I have met with a local manufacturer about helping me produce the bags, and we are still working out the kinks on this venture.
--I have met with a business coordinator about beginning a non-profit, which seems a bit cost prohibitive right now, as Lila needs the $2500 for her therapies.  I am hoping that someone reaches out and offers their help :-) (I realized that this came off wrong, I meant that I hope someone might offer their services to help accomplish all of the parts and pieces of the non-profit without the large fees)
--I have been writing, re-writing, practicing, memorizing, and re-writing again a Tedx speech, which I presented last Friday.  Very scary moment for me, a ton of hours went into it, and I actually believe that I didn't blow it...hahahahah!
--We have been working with a Realtor to put our house up for short sale mid-May.
--I have set up purse displays in two retail locations, and have 8 more that have offered to display and sell the bags for me.
--I have had three vendor shows to sell purses/bags for Lila and have raised another $683 for her therapies!

Yes, I know what you are thinking...that's not a lot to accomplish in 4-6 weeks (hahahah)!  I have been forgetting ridiculous things, and not getting back to people in a timely fashion.  I apologize to you all, and know it will get better from here on out :-)

As for Lila, I last left off with her doctors appointments surrounding her involuntary movements.  Her neurologists assistant here locally thought it looked like tourettes, our CP specialist at Shriners in Sacramento thought this was not at all the case.  So, we are looking to go to UCSF this summer to be seen at their movement disorder clinic and get a third opinion.  The doctor at Shriners thought it just looked like typical CP movements stemming from the cerebellum, feeding to the basal ganglia.  He felt that since everything else in her life was progressing, that this was just something we needed to watch.  Thought that maybe an MRI would be good to do again, to be able to compare to when she was 2 1//2...is the cerebellum growing, changing, atrophy-ing?  So, we intend to go to UCSF first, before we have to put her through this scan, making sure that we get all views that each of the doctors would like to see.

In the world of progress...Lila is doing great!  She walks with her canes everywhere, unless it is a long distance...then she uses her walker.  Here is a video of the girls at Elmo Live, and Lila is playing hopscotch with her walker...

Here we are on Sesame Street!  The girls had a BLAST!

As for academics, over break Lila just got all of her colors and asks for things by color now!  I don't know if you remember, but over the past three years I had been very concerned about her not catching onto her colors.  She had failed three color blindness tests, and I was convinced that this was an issue for her.  Maybe it is still an issue in the way that she sees colors, versus the way we all see colors.  Nevertheless, she is spot on when it comes to labeling her colors now (whatever that means for her)...whew.  She is also grasping all of her letters and sounds!  Holy cow, this is huge!  We spelled 9 words in the car last Thursday, just by using the letter sounds to figure out each letter in the word.  She did it!  We have been working so hard on this for at least two years.  This has also led to her figuring out how to write each letter.  We struggle with this a bit, but is a HUGE improvement since the beginning of the school year.

I volunteer in Lila's class on Mondays, and today they did a writing assignment.  One of Lila's classmates was in remission from Leukemia, and was just care-flighted to Oakland Children's Hospital this past weekend with pneumonia.  He is not well, so the teacher had the kids write a story about what they did this weekend and say something to cheer Cooper up.  Here is what Lila wrote, and I was so proud of her!  I only had to help her with three or four letters, and it is legible (at least compared to all writing assignments in the past :-).

It says...'Dear Cooper, I went on stage.  I miss you.  Love, Lila"

She was so proud of herself as well!  Oh "the stage" you ask?  Well, she came out at the end of my Ted Talks speech, and loves to tell everyone all about it.  The speech is being edited right now, so I will post the link when it is finished.  Some of you have seen it, but I will keep the rest of you in suspense...

Have a great week, and I will post again soon!!!!!

Lila swimming and shopping

I thought I would throw in a fun little post, in the midst of all of the doctors appointments happening these days.
The girls and I went to Trader Joes yesterday morning to do a little shopping.  The carts are just perfect size for Lila!

We also went to swimming on Friday, and Lila couldn't wait to "do it herself"!  She is afraid of getting her face wet...makes her very uncomfortable...so they practiced blowing really big bubbles in the water so that her face was totally wet.  After a few minutes of this, and the addition of goggles, she was going under water and really enjoying herself!
(the video would not upload...sorry - have got to figure this out!)

A lot happening...

Lila balancing with Nora for their photo

HAPPY EASTER to you all!!!

It's been a while since I have posted, but a lot has transpired in the past couple of weeks.

As for Lila, she is on Spring break for three weeks.  This is the first break, since starting school 4 years ago, that we did not schedule a tutor or therapy.  Last week was a nice break!  We hung out together, went for bike rides, and played with friends she hadn't seen in quite sometime.  She played the entire time while using her canes...in the grass, around the play area, and up the stairs even!  The video is too large to display, sorry.  I will try to get another shorter one within the next couple of days.

The one thing we did do last week, pertaining to school, was to go down to Sacramento for an academic assessment through the Linda Mood Bell program.  This is an academic program geared towards kids with learning disabilities, academic challenges, etc.  It is something that we had been talking about doing for Lila this summer, but it is quite costly.  However, we won an assessment, so decided to go and check it out.  What a long day it was...3 1/2 hours of assessment, a little break, and then an hour of hearing their recommendations for her this coming summer (3 hours a day, 5 days a week, for four weeks - $104/hour - aahhhhh).  Not sure which way to turn, but are talking out our options.

The other thing happening with Lila is that her involuntary movements seem to be taking over her days.  They  began becoming more and more apparent last November, so we have really been watching her.  These movements are always worse with stress, lack of sleep, hunger, academic pressure, etc.  This week we go to our neurologist to see what he has to say, and then next week we go to see our doctor at Shriners to get his opinion.  We may inevitably end up at UCSF, as they are the closest specialists dealing in neurology.  The thing that concerns us most is that we were only told that here cerebellum was impacted (smaller than normal), and these movements are controlled by a part of the brain called the basil ganglia.  CP is it's own beast, so changes like these are possible as a child grows and hormones change, however is concerning to us for her future.
Here is a video of Lila with a few of her movements...http://www.youtube.com/watch?v=7R33XqCdzDc  (Matt put it on YouTube for the Shriners doctor to check it out before we come)

The last month of school was really tough for her.  She needed to "squeeze" a TON, and could not pay attention for the life of her.  Her academics seem to be at a halt, and I feel as though these movements are part of this change.  Send prayers out there that this is something she can overcome and learn to gain control of in her own way.