Sunday, December 16, 2012

So very thankful!

What a busy weekend!  I spent my final weekend sewing until I couldn't sew any longer.  A handful of these bags came from the sewing room at creative coverings...thank goodness!  Don't know what I would do without their help, as they sure have helped to make this Holiday season a big fundraising success for Lila!

Not only that, but they are an amazing group of people.  The sewing and cutting crew are so kind and absolutely love it when I bring the girls in with me.  Lila is learning Spanish from them and loves talking with the ladies.  The first time they all met her, they fell in love!    Just like all of us :-)  Not just the production crew, but Nancy  Christian and the women in the sales office have been so helpful in aiding in the coordination of fabrics as well as timing.  Nancy really has been a blessing to Lila and our family!  Thank you Nancy!

An amazing woman, Charlotte Heatherly, has also helped me to do some sewing over the past 6 months.  She has been sewing since she was 8 years old, and is now 68!!!  Pretty awesome :-)  I am so very thankful for her, as well as the relationship we have developed along the way.  Charlotte is one amazing woman whom has taught me a lot about life and spirituality along the way.  Lots of love to you Charlotte!!

I was also thinking of all of the people that have helped us really make this year a success.  Britt, my sister-in-law, has been there with us every step of the way.  Every time we need some graphic design work done...flyers, cards, tags for purses...she is right there for us.  Not to mention the amazing quality of her work, which amazes me every time, she is in full support of our journey with Lila!  We love you Britt!

On the other side of graphics work, is our kind and generous printer here in town...David Spillers with Digiprint.  He donated 100% of the printing services for Lila's benefit over the past two years.  He never expects anything from us, and willingly gives and gives.  Thank you David, you have really made a difference in Lila's life!

Our dear friend Eileen Fuller has gone above and beyond this year for Lila!  She coordinated an art show this past Spring, which was a TON of work, and raised over $1500 for Lila's therapy program this past summer.  She then emails me very recently to tell me that she submit info on Lila to her Soroptomist group, and they selected Lila as their happy dollars charity for November!  So amazing!  Eileen is just always thinking of our family, and we cannot thank her enough!!!  These events have changed Lila's life more than she could ever know!!  Love to you Eileen!

Laura, Laura, Laura....a dear friend of mine from college, whom I have reconnected with, has surely made a significant impact in Lila's "recovery".  Her latest decision to give to Lila revolves around Christmas.  She dropped me a note a couple of months ago saying that instead of Christmas gifts, she was going to request that everyone who gives her gifts should donate to Lila instead.  Crying...give me a minute...this is such a selfless act, and one which most would not think of.  I feel like we think of Lila's needs each and every day, but this is not something that others need to take on in their daily lives.  Laura has chosen to care for Lila from afar, an this means the world!

Claire, a friend here in Reno, came to me a couple of months ago with these jersey necklaces that she has learned how to make just recently.  They are adorable!  I fell in love with them, and then she sprung it on me that she wanted to give them to us to sell at the vendor fairs and raise money for Lila's therapies.  The general good in people always amazes me!  Again, another friend who thinks of Lila as her own, and thought of her own creative way to give back to her.  We have sold at least half of those and raised over $100 so far from the necklaces she donated.  Claire thank you so very much!!!  This was such a pleasant surprise!!!  You are awesome!

Andrea, another friend here in Reno, donated her time in getting me into the Holiday vendor show at IGT, her place of employment.  IGT happens to be the largest company here in Reno, employing approximately 1500 people.  She then took a day off to spend with me at the show selling purses for Lila.  We had such a great day together, and I am so thankful for her thinking of us during this Holiday Season!!!  We raised $623 at this event...thank you Andrea!!!

I can't even began to name all of the people who have supported us in purse sales!!   You all know who you are...THANK YOU THANK YOU THANK YOU!

To Matt's Uncle...we love you from the bottom of our hearts, THANK YOU!!!

Auntie Bonty...ditto!

Mom...you have whole heartedly contributed to my purse making endeavors, and helped to make this all possible!  Thank you...love to you!

Ok, I am sure I have forgotten many others, and for that I am sorry.  At this stage of the year (or maybe my life) I cannot seem to remember my own children's names by the end of the day :-)   So, I am thankful for you all, your love, support, and generosity towards Lila!

Happy Holidays!!!



Thursday, December 13, 2012

Purses, vendor shows

So sorry it has been a while since I've written.  Since my last post, I have had four vendor shows and have a ton of custom purse orders to complete for the Holidays!  AAhhhhh, in over my head right now, but will all slow down in a couple of weeks...whew.   Over the past month we have raised $1683 for Lila, and now have the purses hanging in a local Salon, CRIMSON HAIR AND ART STUDIO (855 South Center, ste 102).  Jessy, a dear friend and owner of Crimson, has allowed me to hang the purses there for the Holidays in order to raise more money for Lila.  Thank you Jessy!  I know they have sold a handful of purses, but not sure how much they have helped us to raise to date.

Thank goodness for all of the funds we have raised for Lila this year.  Our intention was to use this $10,000 (or so) that we have raised in 2012 for her physical therapy session next summer in LA, however we are becoming much more serious about having another stem cell treatment in 2013.  Just over the past 4 weeks we have seen many changes in Lila that are beginning to remind us of our "pre-stem cell" treatment time in 2011.  Lack of focus, pure exhaustion, lack of balance, lack of motivation, inability to express herself verbally leading to very long and exhausting fits (exhausting for all of us), to name a few.  We knew that there would be a plateau that would happen following the treatment, but didn't know when or what we would see...well, here we are.  Every therapist, teacher and aid has mentioned this to us, and we are clearly seeing the same issues at home as well.

So, the next three weeks bring us our Christmas break from school.  We have hopes of a lot of rest, fun activities, and very little school work, so that she can go back to school in January and hopefully have a fresh start.  I am tired also, so am REALLY looking forward to the break!

More posts to come, as I have a lot to share...this is what happens when I take too long of a break from writing :-)

Friday, November 16, 2012

Sip-n-shop at Somersett this weekend!

We are very excited for this event on Saturday evening.  The best part about it is that I have a bunch of new fabric that was donated to our purse cause, from two local reupholstery businesses.  The second best part about this weekend is that Creative Coverings has made a handful of purses for the event, and they have turned out GREAT!  Creative Coverings is the local company that is helping to sew purses from my pattern...AT NO COST!!!  100% of all sales will go to Lila!  Lastly, I have gotten 7 more purses from an amazing woman, whom I go to Church with, Charlotte Heatherly...who has been helping me for a few months now, at a very small fee.  So, all is chugging along, and I have some amazing new purses to sell :-)







Sunday, November 11, 2012

Holiday Shows! Purses make a great Holiday gift :-)

I have been meaning to post this, as the Holidays are creeping up on all of us.  Here is a list of shows that I will be attending, in order to raise money for Lila's treatments and therapies not covered by insurance (ssoooo, most all of them).

1.  Saturday November 17th, 3 - 7 p.m.
Somersett Sip-n-Shop (which apparently is a fun show with lots of unique items)

2.  Friday and Saturday, November 30th 6-9 pm (6:30 tree lighting), December 1st 10-5pm (1-3pm parade), Indie Reno Holiday Craft Fair
Sparks Museum, 814 Victorian Ave

3.  Thursday December 6th (not sure of the time)
IGT Holiday Fair, located within the IGT campus

4.  Friday December 7th, Ivye Johnson's Home (address is within the attached link)
Annual Christmas Boutique...this is a fun, casual event with a variety of local artists
https://www.facebook.com/events/369861113099223/371846902900644/?notif_t=event_mall_reply

5.  Handmade Holidays - not sure of the date, but first or second weekend of December
505 Genovese Lane, Reno 89511
This is a small, but extremely creative group of women whom craft items that I had never seen prior to last Holiday Season.  So great to see women finding time to tap into their creative sides, while still working and being Moms :-)

I hope you all will join me at one or more of these events, as it is so much fun to support local businesses whenever possible!!!

Thursday, November 8, 2012

Advice from a PRO!

Most of you know that we met with a dyslexia specialist this past Monday.  This was a 3 hour meeting, during which we learned a lot about the way Lila thinks, the way she most likely sees letters and numbers, as well as the best ways to teach her letters, spelling, and reading.  That being said, we didn't love this woman that we met with.  Lila definitely didn't care for her at all, because she kept saying that she wanted her to go home (uugghhh, she takes to everybody, so we know it is bad when she says these things).  The specialist was quite condescending to Matt and I at times, an didn't understand Lila and her abilities.  The bottom line being that we all agree that dyslexia is an issue for Lila and now we can move forward, but most likely will not work further with the specialist in particular.

While preparing for this meeting, I sent an email to a good friend of my Moms.  Maureen is her name, and she is about my age with CP and dyslexia.  What a wealth of knowledge she is, and she was kind enough to send this email I am sharing below.  Many of the things Maureen says in this email explains Lila to a "T"!!!   It sure is nice to know that there is someone out there who totally understands.  When she talks about preschool and kindergarten, in regards to letters and numbers, this is the way Lila is at this current stage,  Then you read about where Maureen is today, and we have such great hope for Lila's future and independence!  Maureen is amazing, and I know Lila will be the same :-)  I hope Maureen's story touches you like it did us

Hi Maria!
First, let me say this...  I have a tremendous amount of respect for you and your family.  It takes back bone and courage to raise a special needs child properly-- and from what I've heard, you're doing an amazing job.  I can't imagine how overwhelming, frustrating, and exhausting this must be for you at times.  Know that your effort and work will make Lila a more functional, well-adjusted person.  I know, from first-hand experience. 
             You asked about dyslexia and learning disabilities, so let’s start there.  I have moderate dyslexia.  I also have a couple other learning challenges…
·         I have a hard time with b, p, q, d, g, m, and w.  Writing or reading, it doesn’t matter.  I have to think about what I’m looking at.  Without concentration, I'll write a p instead of a b or a d, an m instead of a w.
·         I’m a slow reader, but I love to read.  I come from a family of heavy readers, and, learning disability or not, I was encouraged (forced) to read for pleasure. Though, I loathe reading out loud, and will avoid it when at all possible. 
·         When I write anything by hand, I have to concentrate to ensure:
o   All my letters are facing the proper way
o   I haven’t skipped any words or parts of words.  (I've probably done this a couple times in this email, though I've proofread it three time.)
o   I spelled things correctly.
o   My lines of writing are straight.  Unless I really focus, my writing floats up and down, never staying straight with the lines on the paper.
·         I have almost no depth perception.  I cannot see 3D effects in movies.  I don’t use both my eyes at the same time.
·         I have a hard time with greater than and less than signs.  This was embarrassing as a kid.  It’s absolutely hilarious as an adult.  I have very strong math and analytical skills, and both play a role in my career.  So, when I use < or > in code, and the code doesn’t work, I always know where to start looking for the problem.
·         I have no artistic skill.  Even stick figures are a challenge.  I can’t carry a tune in a bucket.  And, I worked REALLY hard to earn a C in geology when I was in college.  Why list these things?  Because they’re the only academic things I’ve ever really applied myself to learning and then failed miserably.
So, I have these limitations.  I know they’re there.  At times, they’re a pain in my behind.  When I have to read something out loud to a group of people at work, I tense up and get nervous enough to be sick.  But, most of the time, I don’t think about any of them.  I learned to cope with my disabilities when I was a kid, so they don’t negatively impact me much as an adult.
 I work on a computer 90% of the day, so my handwriting doesn’t matter.  I’ve exceptionally good at my job, adored by my co-workers and the company leaders.  So, when I’m in a meeting and need something written on the white board, I ask someone else do it.  Or, if I do it myself, we all have a good laugh at my terrible handwriting/spelling/skipped-word issues.  I get affectionately teased about my greater than/less than sign thing.  No one thinks any less of me for it.
Occasionally, I meet someone new who takes a good look at my lazy eye and my walking limp and dismisses me as not-very-bright.  I take perverse joy from watching that person realize that I’m different, but not stupid.
And, that’s really what it comes down to, Maria.  My brain is just different.  I literally laughed out loud when I read your sentence about Lila memorizing things easily, but not recognizing a word from page to page.  I have near perfect recall if you tell me something.  I can parrot it back word-for-word.  But, if you ask me to read something and then tell you what I read, I’ll paraphrase the main points.  I won’t remember any of the actual phrases I read, unless I make the effort to commit them to memory.  And, if I'm tired, I can't pick out a specific word on a page without really concentrating.
Still, I’m a functional, independent, successful adult.  With cerebral palsy.  And, with learning disabilities.  My mind is agile—I adapt to change and pick up new skills more rapidly than my peers.  While counter-intuitive, I think I learn more quickly now because I struggled so much when I was kid.  Most people make their way through school without really thinking about the mechanics behind learning something new.  They walked the path dictated by their teachers and schooling.  I didn’t have that luxury.  My brain didn’t absorb information well through the normal teaching methods.  So, I had to learn how to learn.  Once I did, I flourished. 
I’m saying this now because it’s the good news, and (I think) the end result of what you’ll want to achieve with Lila. The bad news is it took a LOT of hard work to get where I am. 
And, now, a stroll down memory lane…
I sat through two years of preschool because I had a hard time with letters and numbers.  When it was time to start kindergarten, the school administration wanted to move me to a confined, full-time, special education classroom.  My parents adamantly refused; they insisted I was capable of keeping up with normal classroom work. 
The school principal and my mom got into a terrible argument.  The principal told my mom that she was over-reacting, and was rather condescending with her.  “Learning disabilities are not contagious.”  My mother doesn’t tolerate people talking down to her.  (She also has plenty of backbone and courage.)  She fired back, “Learning disabilities may not be contagious, but behavioral patterns are.”  In the end, the principal and teacher blocked the classroom door on the first day of class, and refused to let me in the normal kindergarten classroom.  My parents put their house on the market and moved to a new school district shortly thereafter.  Like you, my parents worked hard and took risks to ensure I had every opportunity to succeed. 
My mom was absolutely right in this, Maria.  The social setting with other functional “normal” kids was important to my development.  Other kids are mean and I struggled with the school work at times, but I pushed myself harder because I didn’t want to be embarrassed in front of my peers.  I made my way through school by sheer force of will.  I refused to admit I was incapable of doing something.  If my siblings or friends learned something or did something that I couldn’t or hadn’t done, I immediately wanted to do it.
If Lila is going to overcome the issues slowing her down, she needs to be challenged.  She needs to be frustrated.  She needs to want to do it on her own.  No one else can do this for her, so she needs to want to do it for herself.  She needs to be hungry for success.
If Lila’s path is anything like mine, she’ll spend a lot of time copying words and sentences.  There will be a lot of work on sight words with flash cards.  There will be a lot of time spent working on reading comprehension and phonics.  She’ll spend a lot of time putting puzzles together.  (If she’s not big on puzzles now, you might want to encourage her to do them.  Jigsaw puzzles are hard for me, but they stretch my mind.  Same thing with Sudoku.  )
I had some very low tech tools to help me.  I remember, in particular, having a note card with a long, narrow window cut in the middle. I’d use it as a guide, keeping the window on the line of text I was reading.  It would cover everything except the line I was reading, making it easier to keep my place.  Now, I love my Nook.  I can re-size and double space the text of anything I'm reading.  It's delightful.
Everything took time and practice.  It was, in turns, extremely frustrating and extremely boring because of the repetition.  I spent a lot of time learning and memorizing fundamental things, like multiplication tables.  For reading and math, I went to a special ed class.  For all other subjects, I was mainstreamed.
Somewhere around sixth grade, everything fell into place.  I had mastered the basics, and found a way to make my brain absorb information.  I focused on paying attention in class more than reading the textbook.  I did well with independent tasks because I could do things at my own pace. 
By high school, I had perfected my learning methods so well that I didn’t need any special education assistance.  I took honors and advanced placement classes and got A’s.  By college, I didn’t even bother buying the textbooks.  I knew I would gain little by reading them, so why spend the money?
When you meet with this specialist on Monday, keep in mind that it doesn’t matter what label they stick on Lila’s learning challenges.  Dyslexic or something else… it doesn’t matter at all.  The label just helps the experts figure out where to start with her.  They’re going to step through each teaching technique they have until they find one that works for Lila.
It is absolutely vital that you set high expectations with Lila.  Don’t accept anything she does in school as “good enough” until you know she’s given it all the time, attention, and focus she reasonably can.  Don’t let the teachers and specialists coddle and baby her.  She needs to be treated like a normal kid.  But, at the same time, it’s important to encourage her along.  I remember screaming and crying when I couldn’t do something right.  I also remember my mom getting into a huge argument with one of my teachers (around 3rd grade), because the teacher let me slide on some schoolwork.  The teacher told me it was OK that I failed, and that no one expected me to pass.  My parents always expected me to pass.  They always expected me to do well, even if it was hard.
                Was that preachy?  I’m not going for preachy.  My point is that Lila will only accomplish what she’s expected to accomplish.  Learning disabilities or not, expectations have to be high if you expect her to perform well.  Having a learning disability doesn’t mean she’s slow or stupid.  It just means she’s different.
                You’re a great mom.  I can tell by all the time and work you’ve put into making sure Lila has every opportunity to thrive.  She’s lucky to have you.  As you work through this learning stuff, just remember to use common sense.  You know Lila better than anyone else.  Don’t let anyone sell her short.  There’s a long road ahead of you, but know that Lila can (and will) succeed.  She just needs to find a way her brain works.  My mom and I think that Nora will encourage Lila along as they grow.
Good luck on Monday.  I’ll be thinking about you and Lila, cheering for you both from a distance!

Sunday, November 4, 2012

pink and purple leaves

So vibrant!

 For the past month Lila, Nora, and I have been noticing, and having lengthy conversations about the changing colors of the leaves this Fall.  These have been funny chats :-)  Last week I ran into Lila's speech therapist at school and she mentioned that she has been having the same conversations with Lila.  Talking about the colors; yellows, golds, reds, browns, greens, and oranges.  When describing these beautiful colors, Lila always says that the leaves also turn pink and purple.  I laugh as we say, "They don't turn pink and purple, silly".  Her therapist mentioned that she has had the very same conversation with Lila :-)

My favorite!  All of the colors of the season in one tree :-)






As I was driving around town yesterday,  I noticed that some of the trees did have leaves that were in the pink and purple families, and then felt bad about limiting her awareness and abilities to describe what she is seeing in nature.  Uugghhh!  I will never do this again, as I should take the time to notice and try to see what she is seeing.  You can learn something from that little one :-)  This is what I will take away from our conversations about Fall colors, and I share this so that you can all do the same!

Have a great week!

bike ride with Matt and Nora

Wednesday, October 31, 2012

So much to say :-)

What a great couple of weeks, and Happy Halloween to all!

First of all, this past vendor fair last week raised $402 for Lila, as well as another $134 in purse sales from other friends!  I came home with 6 purses, now am back to sewing and will have new photos to put on the blog within the next week or so.  Please check back for new photos under the "purse tab".  Nevertheless, these funds raised will allow Lila to attend another physical therapy program next summer.  Due to the fact that we have not done a ton of huge fundraisers this year, all of these little efforts have still resulted in $9000 (the cost of a four week intensive PT program) raised so far this year!  So exciting!

As for another stem cell treatment, I am going to begin my research again after the Holidays, and hopefully we can make it happen before next summer.  There are some protocols with multiple stem cell treatments, of which I have to research and make sure we are making the right decisions.  Much more to come...

Now for Halloween...very exciting that Lila is ready and willing to wear her costume all day today, for the first time ever!  Only took 6 1/2 years :-)

So, I got this idea for their costumes in a magazine but didn't think they would go for it.  In a conversation with Nora (who is very decisive), I showed her pages and pages of handmade costumes...princesses, flower fairies, spring/fall, ballerinas, etc.  She says, "no, no, no, no, no".  I turn the page and she sees the milk costume and says, "YES!".  Lila then follows with, "Ok, I'll be a cookie!".  So funny, as I thought I would have to make these complicated princess costumes!

You will notice in this photo that they have switched costumes...Just for that night they decided to wear each others costumes, and thought it was funny :-)  So today, Lila is a cookie and Nora is milk.  Maybe they will switch again for trick-or-treating...you never know with these girls!

Lastly, Lila is making such great progress at school.  She is writing so much more smoothly, really grasping her numbers, coloring in the lines, cutting out all of her projects, and memorizing books while reading them to us (still not grasping many site words, but the memorization is the first step :-).  With all of these new skills, we are beginning to realize that she has some stumbling blocks.  Lila writes many of her capital letters upside down, reads all books upside down, knows the letter S one day, but not the next, etc.

For the past three years I have been working with her teachers to find different ways for Lila to "get it".  I had figured this out after the first year when I saw the other kids moving forward so quickly (special needs and typical), while Lila was not understanding letter recognition, number recognition, colors, etc.   Some of this due to CP and her slow processing, but most of it I could just see that it was not clicking.  Not having a background in education, I didn't know how to change the ways that we were teaching her (basically used the repetition method for 3 years...didn't work).  None of them could figure it out, however I think I have now found our solution.  Seems like Lila has many characteristics of dyslexia.  We are meeting with a specialist next Monday, and will then have some answers.  After an hour conversation with the specialist, she mentioned that she has many solutions to teach Lila differently, and retrain her brain to see words differently.  This would be so great if we could learn to see things the way Lila does, in order to help her to progress.

Anyway, more updates to come.  Hope you all have a fun evening of trick-or-treating!!!!

Thursday, October 18, 2012

Night of indulgence 10-19-12

Before I tell you about the event happening tomorrow evening, I would like to extend a thank you to a couple of more people...My dear friend Keith, who now lives in Southern California, made a donation to Lila a few months ago solely based on the fact that he was thinking of her....LOVE HIM!  I have known Keith since the mid-90's, and although we may not chat very frequently, I always know that he is there :-)

Secondly, Shauna...Shauna is a friend of a friend whom I met earlier this year at the Art for a Fresh Start event for Lila.  She bought a purse from me there, called me a week later and we met up for her to buy another purse, and just came by the house today and bought two more!  She always thinks of me/Lila when buying gifts for friends family, and the Holidays!  I love her!  We chatted for about an hour today, shared some good laughs, and she gave me a few great suggestions for the purses.  Not only that, but she offered a great idea for a new project, in order to raise money for Lila.  More to come on that, but wanted to extend a HUGE thank you to Shauna!!!

Lastly, I have been asked to sell purses at the Family First Chiropractic's Night of Indulgence tomorrow evening. http://renosparkschiro.com/wp-content/uploads/2012/09/NOI-2012-Reno-Flyer.pdf  This is always a fun event, and full of great energy!  Please come by and check out the 10 minute massages, my handmade purses, henna artist, and much more!  There will be good food and good company :-)  Hope to see you all there!!!!


Tuesday, October 9, 2012

Thankful

Over the past three or four months we have had many friends and family reaching out to continue their support for Lila.  My niece, Vanessa, organized a fundraiser at her school, getting the word out, educating others and raising almost $125 for her cousin.  Our chiropractor and friend, Cliff Fisher of Family First Chiropractic (amazing group, you all should go check them out!), has a customer appreciation picnic every year, of which I was able to set up tables and sell purses for Lila.  My sales totaled $292, and they also chose Lila to be one of their three charities that they support with the funds raised in the raffle... totaling $605.00!  Feel so blessed to have people pulling for Lila!

A dear friend here in Reno has recently asked what she can do for Lila, as her company offers a paid day off for community service :-)  She happens to work at IGT, a company who hosts an annual Holiday fair at their site each year.  Only IGT employees can sell goods, so she has offered to take the day to sell purses for Lila, and I can be her assistant :-)  So cool!

Another friend here in Reno was reading my posts about hyperbaric oxygen treatments, and decided that she needed to donate to Lila and help keep her moving along.  This friend has enough on her plate, with four children, that donating to Lila should be the last thing on her mind, but it wasn't.  I am humbled to have such support here in our community! (remember...the chipin button on the blog is always active, and we are continually fundraising for treatments and therapies :-)

Oh yes, and Matt's uncle...he is supporting Lila in more ways than I can express.  His motto is "silence is safety", and doesn't liked to be praised for his kindness, so I will leave it at that :-)

Lastly, I will be involved with 5 vendor shows this Holiday season, of which all fees for the shows have been waived, in order to help Lila even further :-)  People are good, and we are very thankful for the love and support that is still flowing out there for Lila!

Thanks to you all!!!!

Monday, October 1, 2012

HBOT parent testimonial

Well, our first attempt at the hyperbaric oxygen treatments this past Monday was not very successful, and neither was Wednesday.  Lila is all about baby steps :-)  She peeked in it, looked in the little window and actually got in the chamber for a minute or two (after I promised her that we would not close it and turn it on).  Today we tried again, and this time Matt took her.  She got in the chamber, with full resistance, but would not sit down.  We are going to try a few things at home to make her more comfortable, and see if we can make it happen later in the week.

Below is another parent testimonial with tons of great information!!!  The information below is the reason we think it is so important for her to try it for a bit...

My son, Hunter, is currently 14 years old and has CP.  He has had 468 hours in many different types of HBOT chambers.  We started in a mono chamber when he was a toddler.  They fill the entire chamber with 100 % Oxygen where he had 87 hours with in two years.  He has had 203 hours in a multiplex chamber in three different facilities within 5 years.  This is where the child wears a hood and breaths 100 % Oxygen.  We then located a soft sided chamber in our home town and he did 78 hours in five months.  We bought him a home chamber last August and he has done 100 hour in his own bedroom.

We read a study that compared the depths of the chambers and the results in the children.  A Doctor in India had 120 CP children.  They were divided into four groups.  All groups received the same PT and OT services.  Group one also received 1.75 ATA, group two received 1.50 ATA and group three were in a home chamber.  Group four were the placebos who received no HBOT.  His findings were all 120 children improved from the PT and OT therapies.  The children with 1.75 and 1.50 ATAs improved in both motor and cognitive skills however  more significantly in motor skills.  The children in the home chamber improved in both motor and cognitive skills however  more significantly in cognitive skills. His final findings were the improvements in motor and cognitive skills were better for the children who received HBOT and not enough difference to say 100% Oxygen or Room Air was better.

I can forward you the study and what I wrote above is my version and words breaking down his study into a paragraph.  What the study means to me is  exactly what we saw in Hunter when he was in the different chambers.  His motor skills improved in a mono and multiplex chamber with cognitive skills improving second. Where in a home chamber his cognitive skills improved with motor skills still improving but not as great as in the 100% environment. (But still very good)

The study in India explained the difference in results could have come from the air they breathe.  Comparing 100% Oxygen in a mono chamber or hood to an Oxygen Concentrator combined with natural Carbon Dioxide in a home chamber.

This also explains why the USA studies have been inclusive.  The studies try to ‘fool’ the parents by compressing the chamber so they are unaware if their child is in the placebo group..  Both the children receiving 100% Oxygen and those breathing room air will improve.  You are right to talk to parents.

My sons results have been numerous and remarkable improvements or we would not have continued the HBOT treatment.  It is difficult for a mother of four to pack up and leave for a month at a time so her child can have HBOT not to mention the expense.  I have been with my son for every hour in a chamber and my personal health is very good for someone being 51 years old.  So buying a home chamber was as much for mom, the caregiver, as for Hunter.  Even though we have a home chamber I feel it is important to do the deeper depths as well. I would like to bring Hunter to a free standing chamber and do another 40 hours at least two more times in the next few years.

My opinion is get your granddaughter into a HBOT chamber whether it is a free standing chamber or a home chamber.  The changes are well worth any money invested in the child.  Therapies that are working to better her now will dramatically improve after being in a HBOT chamber.

Tuesday, September 25, 2012

Hyperberic Oxygen Treatments

Hyperberic oxygen treatments (HBOT) are said to have huge benefits in children with cerebral palsy.  I have known this for a few years now, but we have felt as though we have been putting Lila through so much that it was something that needed to be put on hold.

HBOT definition in wikipeda:
Hyperbaric medicine, also known as hyperbaric oxygen therapy (HBOT), is the medical use of oxygen at a level higher than atmospheric pressure. The equipment required consists of a pressure chamber, which may be of rigid or flexible construction, and a means of delivering 100% oxygen. Operation is performed to a predetermined schedule by trained personnel who monitor the patient and may adjust the schedule as required. HBOT found early use in the treatment of decompression sickness. But it has also shown great effectiveness in treating conditions such as gas gangrene and carbon monoxide poisoning. More recent research has examined the possibility that it may also have value for other conditions such as cerebral palsy and multiple sclerosis, but no significant evidence has been found.

How does it work?  Well, there are a few different types of  HBOT chambers, one hard shell, one flexible construction, home chambers, and situations where you sit in a larger chamber with a helmet on (of which you are getting direct oxygen through this "astronaut" helmet).  We had tried the helmet route before, but Lila would have nothing to do with it.  Tried it once.

Locally we have two options, the hard chamber and the soft chamber.  The soft chamber is one that two of my friends from our CP support group have used, and seen great results.  Speech improved immediately, cognitive levels rose, and one child gained a better sense of her body in space (something all kids with CP could use).  We are now at a point where Lila is really gaining ground in her academics, and a little pure oxygen could really keep this moving along.

It is recommended that we do 10-12 treatments before making a decision to stop.  It takes a few treatments to give the brain the chance to begin healing.  Thankfully, Lila is on Fall break for the next three weeks which gives us the opportunity to try this alternative treatment and see if it will benefit her.  So, we are going to start next week, go three days a week for three weeks, and then assess the benefits for Lila.

I am part of a parent to parent network and this was written by a Mom with great experience in HBOT.

We have taken our son and it has been the best thing we've ever done for him!  We did 40 dives in 2010 and 40 dives last summer.  Since the second set of 40 we have been going for 6 to 10 dives every 4 to 8 weeks.  If seizures reappear we head back sooner and the are quickly eliminated.  He is drug free so this is the only treatment we are currently using for seizure control.  We found that we were able to stretch him out better at 1.75 ATA than we were at 1.50.  Based on that, I'm skeptical of the mild HBOT chambers that treat at a lower ATA and do not ensure pure oxygen.
The first changes we noticed were in his vision within the first 2 dives.  His stomach issues have dramatically improved as well and he can now eat gluten products with no issues.  The most concrete evidence we have, that cannot be dismissed as a wishful Mom, is that in the 8 months before his first session of 40 we were in the hospital every other month and in those month our insurance company paid out over $44,000 in hospital visits.  In the 18 months following not one hospital visit and he still has not be admitted into the hospital since that first session in 2010.  He looks so healthy and attentive.  All of is therapists and even school staff have noticed the difference.
Even if you have to do fundraisers or grants it is well worth it.  After we saw this video of Kurt Allen, we knew we had to try.  Keep in mind when looking at Kurt's video that he had a knowledge base to work from since he had no disabilities before a car wreck.  Ryan's progress hasn't been that quick because he didn't have the previous knowledge base to work from; however, his progress has been life changing for our family.  You can see Ryan's progress at http://www.specialfaithforspecialneeds.com/ 

I have a few other parent testimonials that will blow your mind!!  More to be shared later :-)


Monday, September 24, 2012

Lila is on Fall break!

Seems like it's been a long time since Lila began school on July 23rd.  Thankfully, we have hit Fall break time, as we all need a little change for a few weeks.  I know that this is called BREAK, however, Lila always loses a ton of information on her breaks so we are going to be busy.  The first week, beginning today, Lila will attend a week of intensive physical therapy here in town with her weekly physical therapist.  4 1/2 hours a day, Monday through Thursday.  Friday will provide a nice break, and then a fun weekend in San Francisco with Uncle Ron.

Lila and Jaden
This past weekend, to kick off break, we attended the buddy walk to support our friend Jaden!  What a fun morning, including the tumble-bus and bounce house :-)  The girls had a blast, and took really long naps that afternoon!  We always enjoy this event, and are glad to help out our friends in any way possible :-)

Lila is also going to begin hyperbaric oxygen treatments today.  Monday, Wednesday, and Friday for the next three weeks.  My next few blog posts will get more in depth with what hyperbarics can do for kids with CP.

Lila being silly after church yesterday!
The following two weeks Lila will go to Goddard school from 9-12 every morning in order to keep her academics on track.  May not seem like much of a break, but will be a nice change for Lila (and I) :-)  She needs to maintain a schedule or else she just turns into a mess, so these three weeks will be very nice.  She will be able to interact with a different group of kids, and have fun with one of her favorite teachers around!  Thank you very much to Denise for affording Lila this opportunity to come to her school in October...we are thankful for people like Denise in our lives!

Friday, September 21, 2012

Great news!

As most of you know, I have been making purses for the past 1 1/2 years in order to raise money for Lila's treatments and therapies not covered by insurance.  This has been a nice avenue of revenue for her fund raising account, however is very difficult to take it to the next level when it is just one person making the purses (me, that is).  I had become very stressed trying to build an inventory and get the word out there.  So, about two or three months ago I began working with this amazing woman from church, who has sewn for 60 years now.  She is very talented, and was willing to help me make some purses and take the load off.  Very very helpful, but I had to pay her a bit for her time.

Over the past year I have tossed around the idea of beginning an Etsy (all handmade items from artists around the world) site is in order take this one step further and hopefully raise enough money for Lila to have another stem cell treatment and multiple therapies over the upcoming years.  However, this could not be done without an inventory substantial enough to support a site like Etsy...so went on hold for a while.

A dear friend of ours has recently connected me with this amazing entrepreneur in the Reno are who owns a company called Creative Coverings.  Creative Coverings is a company that makes tablecloths for events and  high end weddings.  They have a cut and sew in house, and are looking for a way to give back to the community.  LILA, I say!  They have chosen Lila to be their "charity" and are going to make purses for us using their scraps (which are awesome), at no cost to us!  HOLY COW!  We can finally gain an inventory and make this happen!  So exciting!  This will all happen over the next few weeks, and I will post samples as soon as possible.

Hope you all are excited as I am!

Wednesday, September 12, 2012

Full day kindergarten

WOW!  Lila is doing soooo well!!!!  She is interacting with all of the kids, raises her hands to answer questions, and is progressing in her writing, letter recognition and letter sounds.  We are absolutely amazed at her progress and capabilities, as is her teacher.  I had a teachers conference this past Monday and she is recognizing 21 out of 48 letters, has 50% of her letter sounds down, and is recognizing 6 different site words!  I have been frustrated for three years over her lack of progress, and now she is finally ready!

Lila loves to pretend to be the teacher at home, read books to the class, ask math questions, and wakes up on Saturday mornings asking to go to school.  SO exciting to see her finally becoming interested in academics!  We are not even putting pressure on her to focus and grasp concepts, like we have tried to do in the past...Lila has come around...yay!

In the past, Lila would recognize a skill as difficult, and create a diversion immediately.  Most recently I was wanting to do a homework page with her, and she said that she wanted to do some cutting instead..."because it was easier"- her own words!  This is the Lila I have known for the past four years in school.  Hallelujah, there is a GOD!  She is excited about her letter sounds, feels proud of herself when she points out letters when we are reading a book, and traces the alphabet and her name in a matter of minutes.  Boy oh boy, we are having a great year, and just started school on July 23rd!  It can only get better :-)

There was an opportunity that was presented to us whereas Lila would be able to attend a private school, very near our house, for kindergarten only, as first graders go into the school district.  We made the appropriate calls, looked into services for Lila, etc. however this did not work out.  Nevertheless, what it did do was opened our eyes to Lila's current schedule at school.  For this, I am forever grateful!  Today I had a meeting with all of Lila's therapists, the principal, her one-on-one aide, and her resource teacher.  I put this meeting together in an effort to see how we can all work together to keep Lila in the classroom as much as possible each week.  We feel very strongly about her academics being critical this year, as we have decided to keep her back in full day, typical KG and give her the chance to catch up.  It is working, and I don't want to see her stumble because we are putting too much emphasis on therapies rather than academics.

That being said, the meeting was a huge success, and we feel as though Lila is so well supported!  We are very fortunate to be where we are in the school district, and all of this would not have become so clear to me if we would not have been presented with this private school offer.

Everything happens for a reason...I whole-heartedly believe this.  I originally thought that this offer for Lila to be in a smaller program, be closer to home, and go to the same school as her sister was the perfect scenario.  Well, since this has fallen through, something so great has come out of it.  So, the original outcome I had foreseen was not the real reason that this offer was presented to us.  Funny how things work sometimes :-)  If we are lucky, Lila will be able to attend the private school while she is on her breaks, in order for her to stay on track and keep her momentum going.  This would truly be the best of both worlds :-)

Thank you God for putting people, offers, and hurdles in our tracks...just to get to an amazing outcome, no matter which way this all would have worked out!

Friday, September 7, 2012

Lots of good news....

Oh wow, I shouldn't have waited so long to write, so expect a bunch of blog posts over the next few weeks :-)

Matt and Nora on the left, Mom and Nora on the right
Where do I start....Ok, I will start with last weekend....Labor Day weekend we headed to San Francisco to see Matt's Uncle Ron.  Packed up the girls first thing Saturday morning and started our 4 hour drive.  This seems to be our max distance, as Nora gets carsick after a couple of hours.  I always forget about this until we start driving, so am never prepared.  Poor kid, she just wanted to get there and "rest on Uncle Ron's shoulder" :-)

The girls making the sea lion noises!
We had a fun weekend, but the girls weren't able to get out much.  Matt and I helped Uncle Ron hang all of Barbara's 'old world maps' in his new apartment, which was fun for me and frustrating for Matt (typical when we do house projects together...hahaha.  He usually tells me to just draw it up for him, and he will build it without further discussion. :-)  Anyway, this project took some prep time on Saturday, hanging half of them before dinner, and then laying out, measuring and hanging the rest before we headed out on Sunday afternoon.  Nevertheless, Sunday morning the girls were able to get to the merry-go-round, see the sea lions, and watch a magic show at Fisherman's Wharf.  Lucky for us, Uncle Ron lives 2 blocks from the Wharf, so it is a ton of fun for the girls to go to the city with us.

It was a bit chilly, as summers are in San Francisco, so Nora wore pants for the first time since May (she is a bit obsessed with dresses right now).  Lila is not picky, but is definitely expressing her opinion more often when it comes to what she wears.  Very cool, as we like it when she expresses her opinion about MOST things :-)

Nora on the merry-go-round
Uncle Ron recognized a big difference in Lila since we last saw him...6 - 8 weeks ago!  We have seen a change in her speech clarity, her thoroughness in getting her entire thought out (be it a bit slow), and expressing herself in her stories she tells...all of these skills have really been coming along since we started school in July.  She was sooooo tired, and he still saw a big change!  I love to hear these observations from others, because it is hard to see on a day to day basis.  Lila just keeps making huge strides each week, and we are so proud of her!

Enamored by the sea lions
Lastly, as we expected the girls didn't sleep well at all, which is why we usually only spend 1 1/2 days visiting Uncle Ron.  We have most recently stayed in Barbara's apartment which is soooo quiet, and they both have separate sleeping areas.  Unfortunately, the girls are just not comfortable sleeping elsewhere, and don't sleep in the car on the way home either!  After waking up at 5 a.m. on Sunday, Nora napped for an hour after lunch, and Lila not at all.  We left for SF around 4:30 in the afternoon and arrived home at 8:15....no sleep at all!  WHat!  Is this normal?  I never will understand it!  They were both absolutely exhausted, and still managed to sing every song under the sun on the way home, and entertain each other.  Thankfully, once they hit their pillows, they were out!

View of Coit Tower from Uncle Ron's apartment!
Fun weekend, and so great to see the girls bonding more and more with Uncle Ron!  They love him (oh, Nora asks for him weekly and always wonders what he is doing:-), and we are so thankful to have him in our lives!!!!

Wednesday, August 8, 2012

Working hard at therapy

We seem to be getting used to Lila's new schedule, after three and a half weeks of being in school now.  She gets a nap on Wednesdays, which helps with her focus and strength Thursdays and Fridays.  However, Lila still does physical therapy on Tuesday and Wednesday mornings, and this is what she is working on....
video

Wednesday, August 1, 2012

First week of full day school

Lila's first day of school - 6 yrs old
Last week was Lila's first full week of full day Kindergarten...a long week to say the least.  Up to last week, she was napping every day for 1 1/2 to 2 hours, primarily because she works at least 5 times harder than the average person to do normal things like walk, or stand up, or throw a ball, or just get to the bathroom.  So she is absolutely exhausted every day, and functions so much better when she gets that rest.

That being said, Lila was only able to nap on Wednesday, making for a long week :-)  Nora has been paying the price for all of the negative energy that Lila has after school each day, but she seems to always go back for more :-)

School is really going well, as over the last 7 days there have been 4 birthdays, a gingerbread man hunt (with cookies at the end), and lots of treats..seemingly each day.  This is what she thinks school is about at this point, at least this year.

Nora enjoying Popsicle time with Lila, a rare moment since school began
Today she was exhausted because we started our morning at 7:15 a.m. when we headed to physical therapy, followed by speech therapy, and then to school by 10 a.m.  Lots of walking at school...library, lunch, gingerbread man hunt...WHEW!  Makes me tired just thinking about it :-)  So, we get home around 4:15 p.m., make dinner and head straight to bed.  Bed by 6:30!  Makes for a nice productive night for Matt and I :-)

Some great comments from the teacher have come over the past week.  Mrs. Gladding is so amazed at what Lila can do on all levels.  Her stamina in walking such far distances all throughout the day, using the bathroom by herself (for the most part), cutting and gluing independently, and her social skills with the other kids.  So cool!  We are so proud of her and hope that she excels in her education as this year progresses :-)

Sunday, July 1, 2012

New found confidence

The girls are happy to be back together again!!!
Having been back for a week, I have a lot to share!

Lila and I are back in our routine, and have finally caught up on sleep.  Last Sunday was our first day back and Lila surprised us left and right!  To begin the day, she initiated helping set the table for breakfast, which she had never done before.  She would get plates for her and Nora, crawl into the dining room with them and put them on the table.  Then proceeded to head back into the kitchen to get her and Nora cups, crawled towards the dining room and stopped at the fridge.  Matt and I were just in awe, so didn't stop her momentum and just watched her make the next move.  What was that next move?  She stood up at the fridge and filled their cups with water!!!  We then had to assist her in getting the cups to the table, but this was an amazing new independent step for her.  So fun to see her initiate this all on her own!  The next step is to get her walking with one cane, allowing her to hold her cup and walk to the table all at the same time :-)  Can't wait!

It was quite windy that afternoon, so she needed to brace herself :-)
The next afternoon Lila, Nora, Matt and I met friends at the park.  Matt opened the trunk and realized that I had not brought Lila's walker (intentionally), only her canes.  Lila's canes are still difficult for her, so she likes to use her walker when we go to places like the park because it is significantly easier.  So, in order to minimize the fits, Matt felt it necessary to bribe her with gum...hahaa....Lila got a piece of gum, and if we caught her complaining about her canes, or not using them, her gum would get taken away.  Needless to say, she used her canes to walk EVERYWHERE at the park without a peep.  She was so proud of herself, and were proud as well :-)



At the park, she also was climbing like a champ!  She climbed this "ladder" with ZERO assistance!

Lila has also been pushing anything and everything around the house to be able to walk without our help.  One of those things is her folding chair from her little table in the kitchen, another "walker" is her bigwheel on the back patio.  So great that she is getting creative in her methods for being upright and mobile :-)

As for Nora....she is helping Lila with her independence as well.  We are potty training Nora and today she told me she had to go potty.  Lila said, "Let's go Nora, I'll help you in the bathroom".  Such a great big sister!  She helped Nora take her undies down, and then wiped her...hahaha.  This was another proud moment for Lila.  Normally she just beats her sister up, so maybe now she will help her instead of hurting her :-)

Lastly, Lila's speech has increased in vocabulary, as well as clarity.  Yes, just in the past four weeks!  This is great to see because Lila initiates conversations, asks inquisitive questions, and has become proficient at bossing her sister around :-)  Even at church this morning, many commented on how much stronger she looks, as well as how clear her sentences are!  Another great moment for us all!

So many have asked if this was a good therapy session in LA, and I would have to say that it has helped her more than we can imagine!  Thank you Polfit!