Thursday, January 16, 2014

Last day of therapy

Lila has done great this week at therapy!  When we arrived three weeks ago, Lila had taken three (or so) independent steps at home and therapy in Reno.  Since working hard for three weeks, she is taking 7 consistent steps, and now we have the tools to work with her at home every week in her pursuit of walking independently.  She is very motivated and excited to have acquired these new skills.

One issue with her not taking more steps is that her balance isn't quite there in terms of walking independently all of the time.  This is something that is learned behavior for her, and likely will take more time.  As her brain matures, these skills will make more sense to her.  We also hope that her next stem cell treatment will help heal those "damaged neurons" that are in the way of her motivation :-)

Anyway, she has enjoyed her time here in LA.  The Polish team at
Polfit calls her "Lalonia", beautiful little doll, because she keeps them smiling and laughing all day long.  Lila loves the team here, and they take to her more and more each time we come.

Three week therapy

Lila began a 3-week intensive therapy program on December 30th, and will end this coming Friday.  It has been amazing and eventful all in the past two weeks.

Matt and Nora were here in LA with us for the first week.  This provides for a lot of juggling with the two kids, and a lot less sleep for Lila.  Although, this was the first trip that they actually slept in the same space and did not bother each other like in the past.  I would say it was quite successful overall, but Lila has been much more relaxed since Nora went home.  I don't possess as much energy as Nora, of which Lila feels like she has to keep up with :-)

Prior to therapy, Lila had taken three or four independent steps.  This was not very consistent, but sure made her motivated and excited.  Since we came to LA,  Lila has taken 6-8 independent steps!  She was extremely happy with herself and ready to do more work on Friday last week.  Nevertheless, it turns out her therapist gave her a pretzel very near the end of her first session, and we nearly ended up in the ER.  Just when I think she is in a safe environment, and everyone knows about her severe allergies, I am reminded about how close I need to watch her every move.
This is very difficult for me because there has been much judgement passed in my direction with how closely I have to watch my kids.  Even if I stress the severity of her allergies, this means different things to different people.  Some don't believe me that she will end up in the ER from just eating a pretzel, or a piece of cheese...well rewind to Friday.  I wasn't right next to her during this therapy session, and the therapist apparently thought it was no big deal.  One pretzel for Lila means anaphylactic shock.  So, we promptly left therapy, headed to Urgent Care (or I like to call it, "not so urgent care" which didn't have an epipen anywhere!!!), and then were on our way to the ER with very labored breathing, hives all over her face, swollen itchy eyes, and tons of sneezing, when Lila vomited up the "poison" all over the parking lot.  There was still a bit of swelling, but her breathing went back to normal so fast.  Her and I stopped, waited for a few minutes to see how she was doing, and decided to go back to the hotel room and take a bath.  She felt much better, and we took a homeopathic remedy once returning, which took the rest of the swelling down, what was left of the rash and altered her breathing within minutes.  It was crazy!  After a long nap, she was finally back to herself.  That all being said, there was no therapy on Friday :-(

I hope there are other parents out there that are educating their families and support systems about allergies, and helping people to understand how to care for our kids.  I am sorry to go on these rants, but it seems that the most hurtful and judgmental comments have come from the people that should understand the most.  If anyone has any ideas for educating our families and support systems, please share :-)

So, we are back to therapy this week, and Lila has recovered from her episode last week.  She is ready to go and very happy to be here!

Sunday, January 12, 2014

Barber Holidays

I know this is a little overdue, although I do have an excuse...we left the day after Christmas to come to LA for a three week therapy session:-)  A lot has happened since the Holidays...whew.

I would like to share these photos, but don't have a ton of time to write, so I will make this short.

A few days before Christmas, the girls had their pajamas on and we said, "let's get in the car and go look at Christmas lights"!  Nora said, "In the car?  With our pajamas on?  In the dark?"  She couldn't believe we would do such a crazy thing!  They had so much fun that they didn't want to go home!

The day before we left for LA, Lila and I were at the bank depositing funds that were so kindly raised for her from the Goddard School (Denise and Holly held an amazing week of fundraisers and raised over $3000 for Lila's therapy session!!!  We can't thank them enough!).  As I was filling out the deposit slip, Lila began talking to this man next to us.  I finished up and got in line, while she completed her conversation.  As we were leaving the bank, this man had stuck around and was asking me a lot of questions about Lila (which I love, by the way...I would like to educate people about her, rather than address uncomfortable stares :-)).  He then asked what she wanted for Christmas, so she told him, and as he was just about to walk away, he said, "I don't want to offend you but please take this and get her whatever she wants for Christmas", handing me $100!  WHAT????  I was shocked; You cold tell that there was something pulling him to do this, and he wasn't going to take it back.  I tried, but he felt compelled.  So, as we are trying to simplify and purge items in our house, we decided to use it in offering her a new experience.  Lila got to go to an amusement park for the first time ever!  She had a blast!  We took the girls to Knotts Berry Farm the weekend before she started therapy...see below....

The first day of therapy was great, as we walked in to find these two families that we have spent time with in the past, of whom we love and enjoy spending time with.  This week of therapy was the week of New Years, so we shared time with all of them on New Years Eve.  Sure was a pleasure, and the girls were able to spend time with Bridget's little girl, Sarah.  She kindly shared her handheld electronic devices, and our kids were in heaven :-)

 Happy New Year!!!!