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.