Wednesday, December 11, 2013

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!




Saturday, November 30, 2013

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!

Thursday, November 28, 2013

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!

Monday, October 28, 2013

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!

Monday, June 10, 2013

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, June 1, 2013

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
video
video


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!

Monday, April 29, 2013

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...

video


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!!!!!

Wednesday, April 10, 2013

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!)

Thursday, April 4, 2013

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.

Thursday, March 14, 2013

A HUGE thank you!!!

look at that form!
Thanks to all who participated in the dodgeball fundraiser, came as a spectator, helped with the event, and to South RAC who allowed us to use their amazing facility at no cost!  This all would not have been possible without you all!!!!  We raised just under $4500 for Lila's intensive physical therapy this upcoming summer.  The support, love, and excitement, are/were overwhelming and humbling.

Lila, Kathleen, Nora and Cassie
Lila and Nora were there all day running around with all of the kids.  This was so great because a lot of the players from last year haven't seen her for a year.  They were all very excited to see her improvements, growth, and confidence!  She really is coming along quite well, with a ton of hard work :-)

We had two teams this year that were looking for dodgeball tournaments happening in Reno, and they found us!  One of those ended up being a Mom of one of Lila's classmates (so random and funny), and the other was the UNR football team (hahaha)!  Guess who won?  Those guys were huge, competitive, yet very kind (off of the court).  We were able to grab a few photos of them with Lila, and after that they said if there is anything else they can do for her, just let them know.  Very nice of them, being that they had just met her!

Our resident hippies who had a sit-in, sang "kumbayah", and kept the peace


Just like last year, we have learned a lot from this event and will change a few things for our next tournament.  We have already spoken with the owner of South RAC and are scheduled for the last Saturday in March 2014!  Put it on the calendar and start practicing :-)  We may also have two different brackets, one for the serious players, and one for the novices.  Another suggestion would be to have local food trucks there, following the event.  So, we are working on a list of items that have been suggested to us, and would love to have any other feedback you all may have.  The more efficient and entertaining we can make the event, the more we will be able to support Lila and her treatments and therapies.
Intense games!!!
Soupha means business!

Here are some photos of the players, their team uniforms, and intense games...
The winners the past two years
Ty kept the peace


The photo says it all!
scotty and the constipation




CJ cowering:-)

hula dodgeball!

Josh and Cody Fajardo (UNR quarterback)





love the outfits


the goofballs

Dalva rocks!


UNR football team with Lila




Scotty being a kid with the kids!




Sunday, March 3, 2013

Generosity

Happy Sunday to you all, and happy birthday to my sister, Meredith!

I was just thinking about all of the nice things that people have done for us over the past month, especially those who don't even know our family.  For example, I was at JoAnn fabrics purchasing some buttons for Lila's purses.  I have one favorite button, so I was wanting to place a large order for them.  The woman at the check out counter was asking what I used them for, so I explained the purses, Lila, and fundraising.  The woman standing next to me, checking out, turned to me and handed me $5 and said good luck with your daughter...."tears were-a-flowin'".

Then the following week I participated in a vendor fair at our chiropractors office.  Throughout the evening I had met many new people, whom all were so wonderful and supportive.  However, one woman in particular was chatting with me about fabrics, what I might need for my upcoming purses, and the like.  She had been an interior designer in her earlier days, and had similar passions to myself, so she took my card and moved on.  The next day she calls me and says that she was at the store and saw lining fabric for $1 a yard, thought of me and picked up 5 yards for purses.  She also mentioned that she had extra fabrics and buttons to pass along to the purse making venture.  AMAZING!  I had never met this woman before, and now we will be forever connected.

Hope these stories made you all smile!  Have a great week :)

Friday, February 22, 2013

DODGEBALL...and helping others

Come join us in our one annual community fundraiser for Lila!

Also, we have dear friends through our CP support group whose daughter is having much trouble with her health.  Her name is Scarlett and she is 4 years old.  Scarlett has a few other issues aside from CP, however is having complications with her body.  They are losing the Scarlett that the family has always known.  We do not know how much time Scarlett has left with us, so we want to help relieve some stress from the family.

That all being said, we are donating all proceeds from purse, bag, and necklace sales, during the dodgeball tournament, to Scarlett's family.  Come help support two local families at once!!!!

Saturday, February 9, 2013

Great show last night!

approximately 6" x 9"
Thank you to Family First Chiropractic for always making us feel like part of their family!  We had an amazing night, at the Annual Night of Indulgence, selling purses, little bags, and necklaces in an effort to give Lila an intensive physical therapy program this coming summer ($9000).  Raised $601 for her treatments, and are one step closer!

Lila ran around as if she owned the place, and I kept getting comments like, "Everyone knows her?!?!".  She stole the show!

Check out the new little bags I am making...fun fabrics and small enough to throw in your purse :-)  They all are approximately 6" x 9"...

Thank you all for your support and love!  I also want to thank everyone for passing on the word.  Seems as though I keep getting custom orders each week from around the country!  Couldn't do it without the support from our friends, family, and community!!!!

Saturday, January 19, 2013

Emotional Rollercoaster

Starting last October/November, Lila began having these involuntary gross motor movements that had gotten stronger and stronger, and become more frequent over the last two months of the year.  This may seem like one issue, however, the reason for these movements stemmed from lack of deep muscle input over a long period of time.  Meaning, if you have typical child that has pent up energy, they just run around the house for an hour and are able to feel that release and move on.  Lila, being mobile with significant limitations, does not have that ability.  Just doing PT twice a week and not having any other deep release for that build up of energy is not enough for her little body.  This may seem like a simple fix, however it lead to lack of focus at school (falling significantly behind her peers), therapies and home, long involved fits that were hard for her to come out of, and inconsistent sleeping, which affects her negatively in all aspects.  UUgghhhh, now we have a larger problem on our hands!

So, I had a heavy heart for a couple of months trying to figure out how we can help her, while at the same time utilizing all connections that we have around the country with experience in this realm.  This was extra difficult when running across people who cannot understand our daily life.  This was emotionally exhausting, physically exhausting, and consuming for our family.

Matt and I have learned over time that we are not the same people we were 10 years ago.  This is something that we have known for quite some time, but others still have trouble grasping this concept.  We don't laugh as much as we used to, aren't as spontaneous, and have extensive limitations in our ability to just go anywhere because Lila most likely can't eat the food or participate in whatever activity may be part of the adventure.  Our lives have become much more serious.  It is our job, and nobody else's, to be the advocate for this little girl, whom is the greatest thing that has ever happened to us!  What an amazing responsibility, one that we happily take very seriously.  Lila has gotten much further than anyone has expected, thanks to Matt and I.  Sorry about this rant, however this has been difficult during the already difficult time that we were having.

Anyway, I had many concerns with school that needed to be addresses (so may that I couldn't even prioritze), and needed some support from someone who understood...after a very long involved conversation with a friend in Canada, we decided to take Lila out of school for three weeks and attend a local intensive physical therapy program.   This is the same program that we go to in LA each year, but Lila works with her PT here in town, 4 hours a day, 4 days a week.  Super hard decision to make.

Here's where the roller coaster comes into play....Lila began the program last Monday, and then spent the entire day Friday at school.  Her teacher said that she has never seen Lila so attentive and excited about her work, and visiting with her friends (so much that she kept getting in trouble for talking too much :-).  She was running so fast in her walker on the playground that four of her friends were chasing her and there was infectious laughter from all.  Lila also wrote her letters 100% better then ever, with amazing focus so that she could go to music with her friends.  So fun to hear all of this positive feedback!!!!

After school on Friday, we had a consult with the assistive technology specialist.  We spent 1 1/2 hours talking about different aids that could help make Lila's life easier in the classroom, and help her to complete all of the tasks that are expected of her every day.  This woman was AMAZING!  She had a bag full of goodies that will help Lila in a dramatic way, and change her daily life for the better.  During this meeting, Lila was just playing with the "babies" and having a snack.  When she was done snacking, she came over to the table ad her teacher asked her a few questions..."Lila, L  O  O  K?"  Lila said 'look'.  Then she said, "S  E  E".  Lila said 'see'.  She spelled three more words for her and she got them all correct!  Lila cannot recognize these site words on paper, but she is retaining information she is learning in class!!!  The speech therapist was also in this meeting.  She, too, is an amazing woman who has tapped into Lila like no other.  She came with good news...Lila has met all of her speech goals for the year already!  We now have to write an entirely new set of goals...very exciting, very exciting.

So, this week I feel like Matt and I have made the right decision by taking her out of class for three weeks, and offering her this opportunity to gain some confidence, stability and ability to focus again.  Whew, what a roller coaster.  Hard decision to make when your child is already behind her peers, but a good one when you see the outcome of the deep muscle work.

Wednesday, January 16, 2013

balance and strength

Lila had an awesome day again today, and is absolutely exhausted!  She was so tired this morning, however, we arrived at therapy and she was sooooo happy to be there.  Here is a video of her strength and balance exercises...

video

One more day this week, then to school on Friday.  She is very excited to go to school, so I hope it goes well and is not too much for her to handle :-)

Tuesday, January 15, 2013

New Year, New Lila

Lots of things planned for the New Year in an effort to help Lila progress and give her every opportunity possible to shine!  Today, we began our first 3 week intensive physical therapy program of the year.  Over the past eight weeks, Lila has had a few involuntary movements surface that had either been at bay for a while, or we had never seen them before.  This put us on high alert to watch her progress and the progression of these behaviors.

Sure enough, these involuntary movements have gotten worse, and are especially worse without enough rest or with too much stress.  In the past, Lila has been able to regain control of these behaviors with deep sensory/muscle input (i.e. intensive physical therapy) or stem cells .  Since stem cells are not an option right now, there happened to be an intensive physical therapy opening here in town for the next three weeks, and we jumped on it!

Lila had an amazing morning, where she was totally and 100% into therapy, giving 150% of her efforts and loving it!  Here she is walking with one cane:
video


I will take the same video in three weeks and share with you her progress!!!!

Sunday, January 13, 2013

A refresher for us all


Happy New Year!
We have entered this New Year with some questions about Lila's education, classroom setting, and processing/learning difficulties.  Due to these concerns, I had a long, productive talk with her principal on Friday where she asked for more detailed info on Lila.  After putting this long email together, I thought this might be something to share with you all.  This post just gets back to who Lila is, how she is affected by her CP, and many side issues that affect her daily routine as well.  
Since writing this, it sure has reminded me that Lila does so much in a day, more than her little body can handle, and genuinely tries to keep it together.  This is not always possible for her, and I have to limit my frustration and try to come up with constructive ways to help her relax when she is throwing a major fit, or squeezing anything or anyone within reaching distance just to get that negative energy out.  If any of you natural, healing types have calming ideas, I would love to hear them :-)
Anyway, I hope you all are enjoying your winter!!!

What is cerebral palsy?
Cerebral palsy (CP) is a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.
Cerebral palsy is caused by damage to the motor control centers of the developing brain.
Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception, and other sight-based perceptual problems, communication ability; impairments can also be found in cognition, and epilepsy is found in about one-third of cases. CP, no matter what the type, is often accompanied by secondary musculoskeletal problems that arise as a result of the underlying disorder.
Ataxia-type symptoms can be caused by damage to the cerebellum. The forms of ataxia are less common types of cerebral palsy, occurring in at most 10% of all cases. Some of these individuals have hypotonia and tremors. Motor skills such as writing, typing, or using scissors might be affected, as well as balance, especially while walking. It is common for individuals to have difficulty with visual and/or auditory processing. (LILA FOR SURE, along with choreoathetoid movements).

So, onto Lila.....

She was born with a cerebellum that is smaller than normal.  The cerebellum controls balance, coordination, muscle tone, speech, processing, and involuntary movements.

What this means is that Lila has what is called ataxic hypotonic cerebral palsy.  The ataxia describes her involuntary arm/hand/head movements (also called choreoathetoid movements) that get worse when tired, overwhelmed, and stressed.  The hypotonia describes her low muscle tone.  Only 10% of cerebral palsy patients have low muscle tone, the other 90% have hypertonia or mixed muscle tone.  

Due to her hypotonia, she becomes fatigued much more quickly than the average child.  This fatigue leads to an increase in her involuntary movements, which then affects her ability to focus and retain valuable info.  She lose her balance much more quickly, and can not function at an optimal level, or even one close to that.  Most kids don't need naps at the age of 6, however if Lila does not get that rest, she cannot maintain her balance even when crawling around the house.  This is why we have had to have both of her front teeth pulled, and this need for sleep does not seem to be getting better.  If she does not get her rest, by 5 pm she is hitting, biting, falling, and throwing uncontrollable fits where she cannot regain control.  This is not only miserable for her, but for everyone involved.  

Here are some more random facts about Lila's CP:
**Abnormal movements (twisting, jerking, or writhing) of the hands, feet, arms, or legs while awake, which gets worse during periods of stress, exhaustion, etc.
**Unsteady gait
**Loss of coordination
**Floppy muscles, especially at rest, and joints that move around too much
**Slower than normal growth
**global delays

Lila has also had global delays since birth.  The gap seems to get bigger by the day, of which I hope will level out at some point :-)  There is some issue with her long term retention.  For example, we have been working on letters and numbers for three and a half years now with 50% success in long term retention.  One day she remembers her letters, and the next she doesn't.  However, I can give her a sound and ask her which letter makes that sound, and she will get it right most all of the time.  I can also give her the letter and ask her what sound it makes, which is a bit harder but she does pretty well.

Numbers are even more abstract for her, but she can count anything you put in front of her.  She counted to 60 the other day for us, and just counted 29 items I had in front of her the other day.  We are working on counting by 10's, however if she can't recognize the numbers, I am not sure this is the right thing to do.

We also believe that Lila is color blind.  We have had the test done three times now and she has failed every time.  Each practitioner says that she may be too young to give her this official diagnosis, or it may be due to her brain/CP issues.

On another note, she has major food allergies to gluten and dairy.  These are so severe that she has anaphylactic shock to each of these foods if ingested.  Epipen worthy each time.  This has been since birth, so we are very careful with her diet.

Laslty, we have recently had her tested for dyslexia.  Again, the specialist said that this is usually not diagnosed until 3rd grade, but Lila seemed to have all of the markers.  What this means is that she is a visual learner...a picture thinker.  Even when it comes to letters and numbers.  When I say picture thinker, I don't mean that she will grasp the info if there is a photo of an elephant next to an E.  I mean that she needs to see the actual letter in 3D to be able to recognize it in 2D on her paper.  We spend a ton of time at home molding the letters in clay, and still one day she will know the letter F, and the next day she will not.  Frustrating...yes, but I could imagine that she feels it even more than we do. 

Because of her slow processing and lack of focus when something is too hard for her to retain/learn, she chooses to shut down.  She has done this since she was 1 year old.  If something is too difficult, which happens often, it is easier for her to shut down than to try to focus and then still have the possibility of not succeeding.

Oh, one more thing...at the beginning of February we have an appointment with Dr. Meier, a vision specialist in town.  This was based on a recommendation from Lesley.  He should help us all to know how Lila tracks when looking at a book, letter, or activity page with directions.  We can gain a lot from this information, not to mention all of the other tools he may have for us from an educational setting perspective.  I'll keep you all posted.

Hope this wasn't too much info :-)