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!!!!!

2 comments:

  1. Hey guys! Glad to hear you all are doing so well! Sounds like Lila is doing great that is awesome to hear! I misplaced your email somehow but wanted to tell you I haven't forgotten about you but I had to drop out of school. The cost in relation to being able to pay off the student loans I want no more debt than we have and it is more than a challenge with being able to provide care for Abigaile and do school it was a big load.
    Sounds like you have those purses going that is awesome! Remember to look on Hyena Cart as well if you can it is a great tool! We will be praying for you all. We aren't sure if we will see you this summer or not we burned ourselves out doing all the therapy and treatments and now we have run out of funds for housing and won't be able to stay in S. California. Our lease is up the end of May and the owner of the home we live in wants to sell so we are out of a house and funds : / Please email us sometime ... Great job Lila!

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  2. Maria you inspire me!
    I nominated you for the Liebster Award. It's fun, check it out:
    http://melsemptyjournal.blogspot.com/2013/05/liebster-award.html

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