Friday, June 22, 2012

Goodbye Polfit and Long Beach...

Our therapy time has come to an end here in LA.  We are sad to go, and we will miss the parents and kids we have shared our time with over the past three weeks.  This group of parents we have connected with have been so wonderful, ad we can not wait to see them all next year!
GOODBYE ANNA!
video


GOODBYE BARTEK!!!
GOODBYE ARTHUR!!!!
On another note, Lila has developed a little crush on a boy named Zach.  He is 20 years old, has CP and is in college, and has turned Lila onto the world of knock-knock jokes :)  We bought a joke book so that her and Zach can tell each other jokes, which has been entertainment for everyone.  Lila actually told Zach that she wanted to come visit him in New York soon...hahah!  This has been fun for Lila!

As for me, while Lila has been in therapy I have been sewing purses.  Feels good to be productive while she is here, and raise money for her all at the same time :-)  I thought I would go home with an inventory of purses to be able to attend some art shows and sell them for Lila, however all of the parents, nurses, and therapists have bought them all!  I actually have 1 left, so will need to get on it when I get home.  This raised $330 for Lila!  So exciting that we can continue to raise money for her therapies, and that people really like the purses.  This has been therapeutic for me, and beneficial for her progress.

Yesterday, our friend Nancyann came over to visit.  We met her at the Residence Inn last year and we all became friends.  So great to see her!
Nancyann and Lila


Lila is sick hanging out with Grandma on the couch :-)
Lastly, Grandma came to visit and has been hanging out with Lila a lot.  Lila was sick this past Tuesday and Wednesday so we were not at therapy.  She spent a lot of time on the couch with Grandma :-)  Lucky girl!  It has been nice to have my Mom here to lighten the load, and she will make the road trip home with Lila and I tomorrow.  We will drive up the California coast for a bit, check out Monterey/Carmel, and head home.  Fun for all, and we hope it is fun for Lila.  She has never made a 12 hour road trip before, as she does not sleep in the car.  Wish us luck!!!!

Thursday, June 21, 2012

Staying in Long Beach...

front door and our little patio
walkway to our apartment


front of the main house
When we found out about six weeks ago that Polfit was able to squeeze Lila in for three weeks, I hit the ground running.  The Residence Inn was an option this time, but we felt as though we couldn't get enough points for a third long term stay, so started looking elsewhere.  I went onto VRBO.com (vacation rentals by owner), and sent multiple notes to homeowners in the Seal Beach/Long Beach areas.  Last time we felt a bit secluded at the hotel, so being hear the beach was something we thought would be nice for Lila.  My note explained why we were coming and asked if anyone was willing to give us a good rate, due to the fact that we were using all fundraising monies to make this trip happen.

A few homeowners got back to me, and one in particular went out of her way to help.  Lupe was willing to give us this adorable little one bedroom apartment in Long Beach (on the peninsula) for a very low cost for three weeks.  Not only was she willing to cut the rent, but she has let me do laundry in her house, and let us use her sand toys, picnic table, and anything else we possibly need.  Her an Rick are so very kind, and we feel very fortunate to have connected with them :-)



We are four houses from the beach, and Lila is in heaven!  We walk along the water, go for bike-rides, and spend time on the beach in the water.  Everyday after therapy she asks to go to the beach because it makes her so calm, and allows her to relax.  Since Nora has gone home, Lila misses her company a ton, nevertheless has been able to meet lots of kids at the beach.  Lila amazes me how she will just go up to any kids and play, even if they didn't invite her over :-)  She feels as though she is typical, and is very confident in herself, which is so fun to see.  Just one more thing she has taught me over time..."don't live in fear of what others may think".  I think this is a lesson that many of us can learn from her.

house around the corner from us
Last time we went to therapy in New Orleans, everyone commented on how they enjoyed the photos of the architecture in the area where we were spending our time for three weeks.  Here are some photos of the architecture in the area of Long Beach.  I take it for granted because we have spent a fair bit of time here in Southern California, but there are many of you who may have never been here before.  So, hope you enjoy!
beach style architecture




Modern gem
eclectic three story



Refreshing one story amongst all of the large beach homes



Beautiful home that gives me the feeling of being in Thailand!

Love the flower bed

This is all one house!  Holy canoli!!!
Spanish style influence

Hope you all have a wonderful week :-)


The homes across the water from us

Tuesday, June 19, 2012

Lila's new skill

video
She was so proud of herself!  Look at the things we all take for granted....

Monday, June 18, 2012

Visitors this weekend


Yes, Matt and Nora came to visit us for the weekend!  We had a great weekend, and I believe that Matt had a good Father's Day celebrating with the girls.  On Saturday we went to visit Matt's cousins in Pasadena, Jeff and Nicole (and Bonita of course :-).  We swam in the pool much of the day, and the girls had a blast playing with Bonita.

On Sunday morning we went for a walk to get some coffee, and apple juice as seen above, and then headed to the park.  The girls had a great leisurely morning, as did Matt and I.  Lila and Nora found their own bench to sit on and share some independence from Mom and Dad.  They were chatting about their apple juice and enjoying each others company.  Very adorable, as most of the time they are fighting and just generally bugging each other :-)  I know you parents out there know what we are talking about :-)

video

Matt and Nora went home late Sunday afternoon, and we miss them already.  Although, Lila ended up with a very bad cold and cough from not getting enough sleep this past weekend, and Nora woke up this morning with pink eye!  So, maybe these visits in the middle of therapy are not a good idea after all.  We sure miss Matt and Nora when we are away, but really need Lila to be healthy for therapy.  So, we are heading home early from therapy today to get some rest and hopefully feel a lot better tomorrow :-)

Have a great week!!!!

Tuesday, June 12, 2012

A little of this and a lot of that

Over the past week and a half we have been doing a lot of this...

video

And this....

Lila and her friend Zia working on the ball together :-)

And a little of this.....


 Above our apartment is a larger one bedroom where Carol, Patrick and their granddaughter Zoe stayed for the first week of our visit.  They were so wonderful, and we really enjoyed their company...especially Lila!  Lila and Zoe had a blast playing ball together, and Lila really looked u to Zoe :-)  The last night of their stay, we enjoyed an evening together with dinner and lots of laughter!  We miss having them around, but was a pleasure spending time with them.  For those of you who know my Mom, Carol reminded us of her, so much that Lila asked if he could see grandma.  Carol took this as a huge compliment because she is a wonderful grandmother :-)
Lila and Zoe (our neighbor for a week) playing ball outside
Patrick, Zoe, and Lila

Wonderful neighbors for a week :-)

Lindsay, Lila and I
My dear cousin Lindsay also came to visit for a couple of days, and was a huge help!  It was so wonderful having her around, that I hope we live closer to each other again someday:-)

Monday, June 11, 2012

Lila's last day of school

The day before we left for Polfit was Lila's last day of school.  I have forgotten to post this since we've been gone, but this was another very proud day for Matt and I :-)

Nora and I attended Lila's "Spring Sing" celebration for school at the end of her last week.  This was so much fun!  Lila sang louder than the rest of her classmates, and really enjoyed the musical instruments.  After much practice, the performance was great!
All of the kids sat on their individual carpet squares, and were directed by the music teacher for their class, as well as their teacher.  They sang many songs, and even had to go up to the microphone and say what they want to be when they grow up. 
 In doing this, the teacher made it mandatory that Lila crawl to her, and then stand up independently to use the microphone.  The crowd of parents was cheering so loudly, which made her feel extremely proud :-)

video

Lila holding her graduation certificate with Ms. Jody
Lila standing independently to say what she wants to be when she grows up :-) - trying to find the video of this moment, before I tell you all what she wants to be :-)
Lila taking a rest with her admirer - Jade
Another thing you all may not know about Lila is that she has a way with these 6 year old boys!  Last year there was a boy in her class named Timmy.  Timmy had the biggest crush on Lila, and called her his "little cutie".  He would talk about her at home, and in social situations, so his family only new her as "Timmy's little cutie".   Well, this year there is a boy named Jade in her class this year, and he is just in love with Lila..hahaha!  Every morning he runs up and kisses her (she doesn't always like this, but he feels compelled to give his morning kiss and hug :-).  There were a few minutes of rest time following the Spring Sing celebration, where Jade laid on the floor next to Lila and rubbed her hair, it was very sweet. 

Jade again :-)
 Jade's Mom actually told me that the weekend before the Spring Sing, he was drawing a heart in the sand and trying to write Jade and Lila in the heart.  The last story I have about this adorable little guy is that upon our return from the last break he could not wait to see Lila.  We entered the school and Jade ran up to her kissing and hugging her with such endearment.   He sat back down after greeting her and looked over to say, "Wow, she is just so beautiful".  Lila sure has a way with the boys :-)

Wednesday, June 6, 2012

We're back!!!

This all happened over the past four to six weeks, nevertheless, we are currently back in LA for another intensive physical therapy program at Polfit.  Lila had a bit of anxiety driving there on her first day, but when she walked in the door, everyone was so excited to see her!  She proceeded to show Bartek, Arthur, Ania, and Ralph her new skills, of which they were all so surprised!  The consistent statement all week has been, "I can't believe how much stronger she is since we saw her last September".  Very cool!  She really is doing amazingly well :-)