Friday, January 6, 2017

The amazing people that fill our world today

We, as a family, always find ourselves running into people that just exude LOVE in our direction.  Oh, what I didn't mention is that this is all because of Lila!  She has such an amazing energy, she is an old soul, and people just flock to her.  Here are three stories from our journey in FL that will warm your hearts, although I will begin with a video of her walking into Kohls with me today :-)

Lila also walked out our garage and driveway, onto the street, up this slope to the stop sign, made a right and went to the walk that leads us to our front door.  Nothing was too tough for this kid today!

Ok, onto our three heart warming stories :-)

This is Orlando.  Orlando works at a store in the strip mall where the therapy office is.  Since the first day we began therapy in October, we have seen Orlando every morning on his way to work.  From the first day we met him, he has stopped and spent a few minutes cheering Lila on and boosting her confidence that she can do this.  He is now saying that he can't believe how far she has come in the past couple of months.  He is shocked, and always has a smile on his face when he sees Lila!

Lila and Orlando

This is Ed.  Ed owns the strip mall where the therapy office is located.  One morning, the week before Christmas, Ed was checking out the happenings near the PT office and he cheerfully said hello to me.  Not having seen him before, I greeted him as well, and kept on walking into the office.  When I came back out, Lila was walking with her PT, and chatting with Ed, all at the same time.  Ed is a member of Shriners in Orlando, FL and fell in love with Lila.  He gave her all of the confidence in the world that she can do this and will conquer this skill with a smile on her face.  He then asked her what she wants for Christmas and she said, "a baby bottle and three diapers for her baby".  Upon opening his wallet, he looked at me and asked if he could give her some money to buy those things.  I said that this was not necessary, and he was insistent, wanting her to have a great Christmas.  So, Lila is now $20 richer and can't wait to put it in her piggy bank when she gets home....that Stinker, she already has a baby bottle and 3 diapers at home!!!
Lila and Ed

Lastly, Tuesday this week we were taking our time going into the grocery store when a man in his 70's passed by and we both said good morning to each other.  I could tell that he looked a little more intently at Lila, but didn't think anything of it because that happens often.  3 minutes later he comes back and asks me if she is sick.  I proceed to tell him that she is not sick, she has cerebral palsy and is learning to walk independently.  He takes his glasses off, puts his gentle hands on Lila's head, and begins to pray to Jesus to heal her and take care of her for her lifetime.  He said more than that, but I was crying, so I don't remember exactly what his prayer for her was...hahah :-)  There was something very special about this man, and I can't put my finger on it, but this energy that surrounded him was angelic.

Lila is so blessed to attract the most amazingly kind individuals into her world.  I hope this is a pattern for life, because if she can surround herself with good people, she will go far and be supported in making an impact :-)  Love her and am lucky to be her Mom!

Wednesday, January 4, 2017

HAPPY NEW YEAR!...and so much more

Happiest of New Years to you all out there in "blogland"!

We had a wonderful Holiday in SW Florida with my Aunt, Uncle, and cousins.  I am so grateful for the time we have been able to share with them since arriving in September.  They are wonderful people, have a wonderful family, and have embraced us with open arms, more than you could imagine (I guess I should mention that I have been in touch with them over the years, but had not seen them since 2000). Truly, this Holiday will go down in the books as one of the best :-)
Christmas dinner on the beach, watching the sunset

Christmas sunset

Lila, Nora, and their cousin Gracie.  So fun!

Lila and my cousin Chip relaxing :-)

Super fun series of games on Xmas Eve...great day!

My dear Aunt and Uncle left their tree
undecorated so that our girls could
decorate a tree when they arrived.  So

Lila and my cousin Chip dancing in front of his decorated house.  She can get anyone to do anything!

Prior to the Holiday, the PT office showered the girls with gifts, and spoiled them like crazy!  From mermaid tail blankets, to headband making kits, to stencils and notebooks, shopkins figures and dolls, and princess jewelry boxes.  This office has embraced our girls as though they were their own, and it is amazing the love the girls feel.  This has turned out to be a very special place for us all :-)
Nora's favorite person ever!  Cecil, the office mgr :-)
She asked me if she could stay in Florida so Cecil
could be her Mom...hahah!  That tells you how it has been going over here :-)
comfy mermaid tail blanket
mermaid tail blanket

Matt and Nora returned to Verdi on New Years Eve, leaving Lila and I behind for the final 6 weeks.  We miss having Nora with us, nevertheless, it is very quiet, calm, and Lila and I get our exercises and walking done every day with no interruptions :-)  She has gotten so much stronger, more patient, and more excited about walking since arriving 4 months ago.  We have had some ups and downs, but the overall theme is that this skill has definitely branded itself in her brain as a new neurological pattern.  That was our goal in coming to FL, and now she can just walk and talk as though she doesn't have to think about each step.  This "walking thing" is becoming normal for her skill set.

Three touching stories, and a walking video, coming up in the next post!

Matt and I are so very thankful for all of your unyielding support, which continues to shower us with love, even as the years go by.  We count our blessings every day, and are glad to be able to share this journey with you all!!!

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 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!

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 great to see her!!!

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

Tuesday, December 6, 2016

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'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 :-)

Thursday, November 3, 2016

Little angels

Before leaving Nevada, I had a couple of the women, whom I love and trust, tell me to look out for those Angels that would come my way on this journey to FL.  Everyone we have crossed paths with, except that nasty landlord, has been just wonderful.  However, a few people really stand out on our journey thus far.

Fist of all, when Matt was still with us early on, we popped into this hospice thrift store in Mt. Dora, FL.  The most wonderful women embraced us, and one offered to babysit at anytime throughout our stay :-)  We had just me these ladies!  This happened again at the pool, here in our Villa area.  April, and her husband Doug, were hanging at the pool one day, and they just took to our kids immediately.  They are grandparents themselves, and reached out with the same offer.  I must look flustered often...hahaha!!!

Two other angels that have come our way, are Dick and Sandy, our lovely neighbors here in Apopka, whom are from Detroit.  Where we are staying, is not exactly convenient, nor is it accessible.  The parking lot is a 4-5 minute walk from our unit, so I lock the girls in each morning, go get the car, pull into this more convenient 20 minute pull out, go back to the unit, get the girls packed and out the door, and we make our way to the car, and off to therapy we go.  For groceries, I have a wagon to load at the 20 minute pull out, and take them as close to the unit as I can get, then take all of the bags out of the wagon, and go down two sets of 3 stairs to the unit.

I only explain all of that because this gift will make so much more sense...Dick became friendly with our family, and would take Nora on golf cart rides in the evening, with he and his dog, Abby.  Everyone has a golf cart here, and that is how they get around more conveniently.  After a week of knowing Dick, he said shockingly, "You don't have a golf cart?", and I said that we were just renting and it was not something that was provided.  He recommended that I go to the golf club and ask if I could rent one for the duration of our stay.  Instead, he decided to do this for me.  Well, the guy running the golf club said that we would need to pay $150 per month for the cart, and Dick got upset
with him.  So, he came back the next day and relayed that news to me.  I told him it was no big deal, we were fairing well, and I was just glad to be somewhere safe and clean, with nice neighbors.  He said that wasn't good enough...he would be back tomorrow.  Sure enough, Dick came back the next day with the news that he got us a golf cart!  A friend of Sandy and Dick is not coming down to her unit until later this year, and she is letting us use her cart until then.  Amazing!  This has really changed our daily lives...everything from getting out of the door for therapy, going to the pool, to getting groceries.  I would struggle to get Lila to the car, and I am so very grateful for Dick and Sandy.  Sandy also brought me dinner the other night, and they are working on finding us a unit from December through February, as we are in need of a consistent space.  Above and beyond!

One other Angel I will make note of is Uncle Ron.  All I will say is that he has taken away the stress of me having to move the girls multiple times during our stay.  This means so very much to me, that there aren't even words to describe it.

Lastly, but it really shouldn't be last, is Sylwia...Lila's therapist.  She has changed our lives, mostly Lila's!  Here are two from Lila walking into Whole Foods today, independently, no assistive devices, and the other at Trader Joes.  She insisted on walking herself into Whole Foods from the car, and then did the same at Trader Joes.  At TJ's, she proceeded to get a kids cart and roll around the store so steady and strong!  Check it out!  Happy day :-)

Monday, October 31, 2016

4 more months to go

Lila has just completed her first 4 week session of intensive physical therapy.  I always forget about the pattern during these 4 weeks.  The first two and a half weeks are always very tough for Lila.  Her body is exhausted and she doesn't want to go on.  The towards the beginning of the third week, Lila turns it around...everytime!  Sure enough, the middle of week three showed huge changes for Lila.

The first two weeks Lila was very wobbly in her gait, and her stamina was low.  She would take 150 to 180 steps per day, and complain the entire 1 1/2 hours that those steps took.  Middle of week three led to 200 steps, 225 steps, and 300 steps.  We were so amazed!  Then came week four...265 steps, 375 steps, 450 steps, 589 steps, and 610 steps on Friday!!!!  She may lose her balance a couple of times during the walking session, but has learned how to catch herself before she falls now :-)  AAnnndddd, 610 steps only took her 40 minutes!

I have to also say that Lila has been having a TON of trouble sleeping here.  For those of you that know Lila, this may come as no surprise.  However, it usually takes a couple of weeks for her to settle in, and we have been here since September 24th...much longer than a couple of weeks.  Sometimes therapy does this to her body, as all of the new circulation to the brain causes her brain to run on overdrive, and her body to be next to non functional.  Well, it has never been this bad before.  She hasn't napped but 3 times in 3 weeks, and is having a huge amount of trouble getting comfortable in bed at night, every night.  She will be yawning uncontrollably at dinner at 5pm, so right after dinner we will start the bedtime routine.  Lila will be in bed by 6:45 or 7:00, and will still be calling me at 9:30 pm to come in her room because she can't get comfortable.  I am trying everything at this point, and am hoping for this pattern to break very very soon.  The bags under her eyes are almost bruised, as they are so dark and purple black from lack of sleep, and at home she is falling like crazy because her body is not getting the recovery time it needs.  In this state, I have no idea how she took 610 steps, but she did!

I am thankful for so much, and extra thankful that we are not coming home after this 4 weeks session, like we would normally be doing.  We will continue to stay here and put in the hard work, so that upon our return, Lila will be a dramatically different "walker" :-)

Thank you all for all of your unbelievable support!