Monday, December 19, 2016

Merry Christmas!!!!!

I wanted to extend a Merry Christmas to you all!!!!  The Holidays are finally upon us, as we melt in the 84 degree temperatures, with 98 percent humidity, for the past few days anyway.  Sure isn't anything like Nevada, in fact, Christmas and Christmas Eve are going to be 83 degrees!  ( I am sorry, Midwest).

Matt arrives on Thursday to celebrate the Holidays with us, and we are so excited.  We hope you all get to share the Holidays with your nearest and dearest friends and family, and wish you the most prosperous of New Years!  Love from the Barbers :-)

Our family motto for 2017!!!  We love Reno art...what an amazing community!
Really captured the girls personalities!!!
Love this kid!

One of my favorite photos of our family!!! LOVE!!!


Friday, December 16, 2016

Lila's been working hard

Lila has been back in intensive PT (3-4 hours a day, 5 days a week, for a month) for the past three weeks.  In that time we have seen Matt come and go, my Mom come and go, Bel come and go, and now Matt will return on the 22nd...yay!!!  Lila is done on the 22nd for the month, and will begin her next and final session on January 18th :-)

Here is a recap of the past few weeks.....

A few fun Holiday events in Mt. Dora...sledding, ice skating, Santa, and a huge parade a block away :-)  We have landed in such a kid friendly area, and they love it!!!

I am having trouble continuing the text below the photos, so I will write it all here, and just have photos below.  So, as for Lila's therapy session, she keeps increasing her skill level each week.  This session Sylwia is really working on walking up slopes and down slopes.  Luckily for Lila (or not so lucky), there is a slope up from the car, then down to the PT office entrance.  She walks this every single day.  Be it slow, she is learning what it feels like to walk outside with all of the distractions, as well as the slope...tough stuff for her brain to handle.  Nevertheless, she is doing great!  They are also working on balancing from front to back and side to side.

At this point, Lila can walk anywhere on a flat surface...as a matter of fact, she hit 1100 steps one day this week!!!  This is on top of working out for 4 hours that day.  She is lifting 3 kilos per leg in the cage (our version of lifting weights), and is really sore this week.  As the weight increases, so does her skill and body soreness :-)  She is so tough, I would not like my parents very much if they suggested I do something like this when I was a kid...hahah!  I am so proud of her, and even though she has had some weak moments, she continues to persevere.   Amazing little girl!

On another note, I hope you all are enjoying your Holiday Season.  I have too much on my plate this year, so this is the first time in 10 years that I will not be sending out cards (feels really weird).  My next post will be a Holiday card, via blog :-)  Love you all!


video




video

Lila being a spectator...all of these events are too
 overwhelming for her.

Downtown Mt. Dora is so amazing with all of the lights.


Little ice skating fun for Nora

Nora went from skates to booties :-)
Nora skating with her friend she met in line,
Anaya.  They had a blast!


Our dear friend Bel, from church, popped in
for a few hours...so great to see her!!!

Second Santa of the season...Nora didn't believe
this one ;-)

Tuesday, December 6, 2016

video
It's been a long few weeks since my last post.  We had the month of November off of intensive PT, only going one hour a day for 12 days during the month.  I spent a lot of time taking her out and practicing independent walking in town, which did not always go well.  The video shows one walking practice session where she kept falling, so just decided to sit on the ground and do yoga.  I am a sucker for yoga, so I couldn't make her stop!

We have learned a lot in the past two months about what Lila needs in order to keep up all of these amazing skills she is gaining.  It became very apparent that we need a physical therapy space at home, as she lost a lot of core control and strength just over the past month.  We are now back in intensive PT for the month of December and she is doing so well...stepping up curbs with no assistance, walking up a large sloped sidewalk to get into the gym, and has gotten more and more steady as of late.


Space shuttle Atlantis

Kennedy Space Center

Sunset before lift off



The past few weeks have been a whirlwind otherwise....Mid November we had to move places of residence, the day that Matt flew in for the Thanksgiving.  After a day of moving, we headed to the coast to see the rocket launch of a weather satellite, the next day a dear friend set up a tour of the Kennedy Space Center for us.  What an amazing weekend that was!  We then shared our Holiday with friends from Chicago (Danni is 10 and has spina bifida...they also attend the same PT program that we do).  That was such a blessing to share the day with such great families, and Lila and Danni got the chance to play together, instead of just seeing each other
Memorial to all lost
Meeting with an astronaut...Jerry Carr

at therapy everyday!  The girls had a blast :-)

That week we ran around getting organized, Thanksgiving came and went, as did Matt :-(  The day after he left, my Mom arrived, and will be here until this coming Sunday.  My Aunt and uncle popped in for a day to visit with my Mom, and we will see them next for Christmas.
Danni and Lila, Cindy and I...from Minooka!

Friends :-)



















The day my Mom arrived, there was a Christmas lights event in the town we are now staying in, which was a ton of fun, as we could walk there from our house!  Matt left us a nice gift...the gift of a winter flu virus, so this next week Nora and I were very very sick.  I was in bed for two straight days, and then three days on and off...mostly on (don't know what I would have done if my Mom was not here helping out!).  It was so awful, but I was able to rally a bit for the Mt. Dora Christmas parade this past Saturday...and we just had to walk down to our corner to see it.  This is such a fun change for the girls and I, and we also are only a few minutes from therapy.  Our permanent address for the rest of our stay is:
147 E. 9th Ave.
Mt. Dora, FL  32757
Santa and his elves!

Christmas lighting event

Amazingly beautiful dresses sent to the girls from a dear friend back home!

Speaking of Christmas...I know the warmer climates try to make it feel like the Holidays, but I am having a very hard time.  It does not feel like the Holidays at all!  Nora even asked me the other day if Christmas had passed already, because it seems so hard to grasp that it's 80 degrees and Christmas is right around the corner.  I am also missing all of the amazing relationships that I nurture and share with friends and family over the Holidays at home.  Lunches with good friends, yoga classes with fellow yogis, hugs every time I turn the corner.  I am missing that most this Holiday Season :-(  The good news....it's only one Christmas...there will be more :-)

Needless to say, there hasn't been much school happening over here lately, with all of the visitors, moving, and therapy.  I am failing miserably, but have accepted that it is part of this journey for Lila.  I will do the best I can, but we are here for her to walk and school will just have to be put on the back-burner for now.  As for Nora, I have been trying my best to keep her going, but that has been difficult as well.  She will be heading back to Verdi with Matt at the end of the year, and she is definitely looking forward to that, as am I.  She needs her friends, and much more attention that I am able to give her in this given scenario.  We will miss her terribly, but will all be better off for it, I am sure.  Luckily, Matt's Mom will be coming out to Reno to help with Nora, while Matt is working on a construction deadline.

On another note, I have learned that it is important to roll with the punches, and am working on trying not to put so much pressure on myself to accomplish it all.  I am thrown for a loop, because I am still trying to find an attorney to represent us with this man whom has stolen $7600 of Lila's money, which seems to take up way too much time these days.  Hopefully we can get this moving forward, and I can enjoy Christmas with the family.  Matt will be back to celebrate with us in two weeks!!!

Happy Holidays, Merry Christmas, Happy Kwanza, Happy Hanukah, and so many more!!!  Love you all :-)