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!!!!


  1. I'm so happy to hear about Lila's progress! And I love the cookie and milk costumes. xo

  2. Just happened across your blog, so glad I did.. OMG, your girls are beautiful and I LOVE the costumes, too cute. That was a brilliant idea on your part and looks like they weren't too terribly difficult to make. Lila looks to be doing so well! Hope you post pics of their Halloween adventures. My kids always came home afterwards and dumped their bounties for a mega candy exchange between them. It was always so much fun to watch them bartering and exchanging their treasures of sugars and sweets. Just want to tell ya, if you ever want to connect with a large network of other CP families, we would love for you to visit us at the <a href="> Cerebral Palsy Family Network</a> . I would love for our families to meet your beautiful family, and if you'd ever consider being a guest blogger for us, we'd be thrilled! Hope the girls have a wonderful Halloween and looking forward to your next post. Thanks for sharing your story and these beautiful pics.

  3. Lee, what a kind message. Thank you for the positive comments, and I would love to check out your group ad be a guest blogger whenever need be. I will check it out today, and feel free to drop me an email at We can further discuss your thoughts on a guest blog topic :-)