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 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.  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


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.