Last day of therapy

Lila has done great this week at therapy!  When we arrived three weeks ago, Lila had taken three (or so) independent steps at home and therapy in Reno.  Since working hard for three weeks, she is taking 7 consistent steps, and now we have the tools to work with her at home every week in her pursuit of walking independently.  She is very motivated and excited to have acquired these new skills.

One issue with her not taking more steps is that her balance isn't quite there in terms of walking independently all of the time.  This is something that is learned behavior for her, and likely will take more time.  As her brain matures, these skills will make more sense to her.  We also hope that her next stem cell treatment will help heal those "damaged neurons" that are in the way of her motivation :-)



Anyway, she has enjoyed her time here in LA.  The Polish team at

Polfit calls her "Lalonia", beautiful little doll, because she keeps them smiling and laughing all day long.  Lila loves the team here, and they take to her more and more each time we come.

Three week therapy

Lila began a 3-week intensive therapy program on December 30th, and will end this coming Friday.  It has been amazing and eventful all in the past two weeks.

Matt and Nora were here in LA with us for the first week.  This provides for a lot of juggling with the two kids, and a lot less sleep for Lila.  Although, this was the first trip that they actually slept in the same space and did not bother each other like in the past.  I would say it was quite successful overall, but Lila has been much more relaxed since Nora went home.  I don't possess as much energy as Nora, of which Lila feels like she has to keep up with :-)

Prior to therapy, Lila had taken three or four independent steps.  This was not very consistent, but sure made her motivated and excited.  Since we came to LA,  Lila has taken 6-8 independent steps!  She was extremely happy with herself and ready to do more work on Friday last week.  Nevertheless, it turns out her therapist gave her a pretzel very near the end of her first session, and we nearly ended up in the ER.  Just when I think she is in a safe environment, and everyone knows about her severe allergies, I am reminded about how close I need to watch her every move.
This is very difficult for me because there has been much judgement passed in my direction with how closely I have to watch my kids.  Even if I stress the severity of her allergies, this means different things to different people.  Some don't believe me that she will end up in the ER from just eating a pretzel, or a piece of cheese...well rewind to Friday.  I wasn't right next to her during this therapy session, and the therapist apparently thought it was no big deal.  One pretzel for Lila means anaphylactic shock.  So, we promptly left therapy, headed to Urgent Care (or I like to call it, "not so urgent care" which didn't have an epipen anywhere!!!), and then were on our way to the ER with very labored breathing, hives all over her face, swollen itchy eyes, and tons of sneezing, when Lila vomited up the "poison" all over the parking lot.  There was still a bit of swelling, but her breathing went back to normal so fast.  Her and I stopped, waited for a few minutes to see how she was doing, and decided to go back to the hotel room and take a bath.  She felt much better, and we took a homeopathic remedy once returning, which took the rest of the swelling down, what was left of the rash and altered her breathing within minutes.  It was crazy!  After a long nap, she was finally back to herself.  That all being said, there was no therapy on Friday :-(

I hope there are other parents out there that are educating their families and support systems about allergies, and helping people to understand how to care for our kids.  I am sorry to go on these rants, but it seems that the most hurtful and judgmental comments have come from the people that should understand the most.  If anyone has any ideas for educating our families and support systems, please share :-)

So, we are back to therapy this week, and Lila has recovered from her episode last week.  She is ready to go and very happy to be here!

Barber Holidays

I know this is a little overdue, although I do have an excuse...we left the day after Christmas to come to LA for a three week therapy session:-)  A lot has happened since the Holidays...whew.

I would like to share these photos, but don't have a ton of time to write, so I will make this short.

A few days before Christmas, the girls had their pajamas on and we said, "let's get in the car and go look at Christmas lights"!  Nora said, "In the car?  With our pajamas on?  In the dark?"  She couldn't believe we would do such a crazy thing!  They had so much fun that they didn't want to go home!

The day before we left for LA, Lila and I were at the bank depositing funds that were so kindly raised for her from the Goddard School (Denise and Holly held an amazing week of fundraisers and raised over $3000 for Lila's therapy session!!!  We can't thank them enough!).  As I was filling out the deposit slip, Lila began talking to this man next to us.  I finished up and got in line, while she completed her conversation.  As we were leaving the bank, this man had stuck around and was asking me a lot of questions about Lila (which I love, by the way...I would like to educate people about her, rather than address uncomfortable stares :-)).  He then asked what she wanted for Christmas, so she told him, and as he was just about to walk away, he said, "I don't want to offend you but please take this and get her whatever she wants for Christmas", handing me $100!  WHAT????  I was shocked; You cold tell that there was something pulling him to do this, and he wasn't going to take it back.  I tried, but he felt compelled.  So, as we are trying to simplify and purge items in our house, we decided to use it in offering her a new experience.  Lila got to go to an amusement park for the first time ever!  She had a blast!  We took the girls to Knotts Berry Farm the weekend before she started therapy...see below....

The first day of therapy was great, as we walked in to find these two families that we have spent time with in the past, of whom we love and enjoy spending time with.  This week of therapy was the week of New Years, so we shared time with all of them on New Years Eve.  Sure was a pleasure, and the girls were able to spend time with Bridget's little girl, Sarah.  She kindly shared her handheld electronic devices, and our kids were in heaven :-)

 Happy New Year!!!!

Enjoying the Holidays

 It has been a fun Holiday Season for us all here at the Barber household, as the girls are really getting in the spirit this year!  Macy's has a Santa Mail Box that goes directly to the North Pole (believe it or not!), and for every postcard they receive, they will donate $1 to the Make-a-wish foundation :-)

So, one Saturday morning we filled out our postcards, and made a trip to the mailbox the next morning.  The girls had so many questions about Santa, the postcard, the elves, and more.  Nora's wheels are really turning on this one :-)  To the left is Nora's card to Santa..."Merry Christmas, I would like a baby with a binky, please.  Nora".  As you can see, she got tired of writing, so we used the printer machine to complete the card :-)















Same for Lila, she writes..."I would like Paper Moon bag, Lila, Love, Lila, sit (just because she wanted to type in the word sit)"..hahah!  So, there is a store in Reno called Paper Moon, and she would just not change her mind that she wanted a Paper Moon bag and a cookie in it.  Love this Kid!  Could it be any easier :-)

 This weekend my Mom is coming to town to visit the girls before Christmas, and we are looking forward to a fun and relaxing weekend.  Saturday we will host the CP support group meeting and Santa will be joining us!!!!  The kids will be so excited and surprised :-)

Yesterday Lila was able to go shopping at school to buy something for Nora, Matt and I for Christmas.  She came home with money still left in her bag and only a gift for Nora...hahahah!  It is fun to see her care for her sister, as this affection is not always shown on a daily basis.

We also talked about giving money for Lila's angel tree at school, to help a local Verdi family this Christmas.  The girls told me how much they wanted to give (with a few choices) and Lila took that to school yesterday.  Matt and I were also talking about taking them to the store to buy food for the homeless on the streets.  Then taking the girls to hand it out and show them the gift of giving, teaching them that giving is so much more powerful than receiving!

We hope you all are enjoying your Holidays as much as we are, and Santa is getting all of his "toy making" done :-)

Stay warm, share hugs, and GIVE back!

Black Friday Support!

Thank you all for your Black Friday support!  We raised $391.40 for Lila, while providing you all with unique, handmade Christmas gifts!  Thank you so very much, as we are headed toward our goal of offering Lila her next stem cell treatment in Spring of 2014 :-)

Happy holidays!

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!