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 videos...one 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 :-) video
video


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.

video
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" :-)

video
Thank you all for all of your unbelievable support!

Sunday, October 23, 2016

Settling in...

The past two weeks have been much better than the first two :-)

I was blessed to have a visit from my Aunt, who lives in Port Charlotte, FL.  She came up for the week and was a tremendous help!  The task of therapy, school, and life here in FL is more difficult than I expected.  Most of my wise confidants made notice of that prior to our departure, and I continued to think I could handle it all...hahah!  They were right :-)

So, these past two weeks highlights....photos are not in any specific order....

Visit from Auntie Irene
 Went for a nice nature walk with Auntie Irene!  Nora and I have been learning about waterbirds the past two weeks, so we took the binoculars, and our nature journals, and hit the lake.  Had a very nice time, and saw lots of vultures, egrets, and gallinules.  Fun morning on Friday...all of the other days last week I tried my best to focus on Nora's schooling, and my aunt took Lila to therapy.  Amazing what you can accomplish when you don't have to drive an hour before school can begin :-)
Nature walk through Mt. Dora
Nature walk


Nature Walk
 We have been swimming a few days a week, which seems to help Lila's muscles.  So, if she does a good job with Sylwia, we head to the pool after her 3 hours of therapy.  This week is her last week of her first month session of therapy.  With commands, and close attention from myself or Sylwia, she walks very very well.  She is not necessarily applying this to walking around the house, to the car, or at the store as of yet.  I am hoping for that shift in her brain where she realizes that this is possible.  This will be the gateway to her true independence!  Prayers please :-)  I have a video of her walking, but it seems to be too large for the blog.  I will get another shorter one this week.

That being said, she just took 225 independent steps yesterday, outside, at our villa.  She lost her balance after 140, and then again 45 more later, but caught herself and kept on going.  This, for her, is amazing!  At therapy on Friday, she took 154 independent steps before losing her balance, and then 20 perfect steps backwards, and to each side.  Beautiful progress :-)

Swimming!
Mt. Dora lighthouse



Gallinule on Lake Dora

Egret

Sunset from back lanai


lunch and play at park













 Last weekend we went on a pontoon boat ride on lake Dora, into the canals and connecting river.  This, too, went along with the birds we were learning about and the nature in the area.  What a great morning it was for us, and sure helped the girls and I de-stress from the beginnings of our FL adventure.
boat ride on Lake Dora
 We went to the library and decorated pumpkins, and also enjoyed the petting zoo.  Very nice Saturday to enjoy the Fall season :-)
petting zoo at pumpkin decorating

Dora canal

alligator island

Anhinga on the canal

pumpkin decorating at library

enjoying the Dora canal birds and wildlife


Good morning central FL

Nora driving the boat with Captain Bob

driving the boat!

Ibises...saw one catch a frog and stab it before eating...yuck!

Lila sings songs to all on the boat ride!

Saturday, October 8, 2016

Two weeks of trials....

Our first two weeks here in Florida have been nothing but stressful.  The kids excitement had built over two weeks time, as the car was shipped, the bags were packed and we were ready to embark on this 5 month journey South.

We board the plane, and take off from Reno at 6 am, landing in Vegas at 7:00 am due to a mechanical issue.  As all attendants had to reroute 200 passengers, we were not able to get out of Vegas until 4 pm, landing us in Dallas around 10:00 pm.  It was midnight before our heads hit the pillows, and thankfully the girls rolled with the punches of the day fairly well.  We woke in the morning, headed to the airport, only to end up with delays at take off due to a storm in the area.  We finally arrived in Tampa at 3 pm the next day...whew.  My hope was that this was the only issue we may face during this transition.

Not true!  We spent a few days with my Aunt and Uncle in Southwest FL, which was very nice, and then headed north to central FL...an hour north of Orlando.  I was very excited to get settled in the house we rented for 5 months, in a town called Tavares.  This home was only 10 minutes from therapy, which was perfect for homeschooling Nora.

We arrived, opened the door, and saw geckos scattering for cover.  Ok, a gecko got in...no big deal, right?  We keep moving forward...checking out the house with the kids.  Before too long, we find a gecko skeleton in a back room, dead roaches next to that same bed, and gecko feces scattered throughout the home.  Very disheartening and disgusting.  After an hour, we let the landlord know that there was an issue that needed to be handled here.  I then took a shower that evening, and after 5 minutes of being in the shower, I got out and picked up my clothes off of the rug, and a gecko ran out of my clothes.  UUgghhh.

We asked the landlord to come meet with us at the house within the next day or so, and he never responded to meeting with us.  He said he would have an exterminator come over, nevertheless, exterminators do not get rid of geckos...repairing all access points on your home does.  I now have learned that he doesn't even believe me that there is a problem with the home, and is accusing me of making this entire story up!  If he would ever meet with me or take my phone calls, maybe he would not judge my character as such.

We then spent two full days looking at places to stay and found a new place to reside.  That home was just not safe for Lila who falls all day long, and puts her hands/face in gecko feces.  The risk of her getting sick during this therapy session is high, and we don't need to expose her to salmonella from gecko feces in the meantime.  So, we finally found a place to stay, even though we had not heard from the landlord yet.  We thought, "There is no way someone wouldn't understand this and not give us our money back (rent for 5 months)".  Well, there is a way...we have moved and he is now refusing to give us this large sum of money back, which came out of Lila's fundraising account to make this trip happen.  UUgghhh, I can't even believe this is happening, as we even told him to keep a months rent and cleaning fee (we only stayed for 2 nights).  So, now I am having to take this further and we have a friend, whom is a real estate attorney, involved.  Sadly, I think this is going to have to be taken all of the way through until the end.  The amount of money he is holding totals an entire month of therapy for Lila!  I am sickened by all of this, and have never in my life been in such a horrible position.

After all of these happenings, we find out that we have to brace ourselves for a hurricane!  We are in Apopka, which was just on the outside of the hurricane's eye.  I had heard something about it early in the week, but just took it lightly.  Then Nora and I went into the store on Wednesday to get her a night light, and people were frantically asking for propane lanterns, and water.  At that point I thought, "Well, maybe we better get on board and follow their lead".  So, water and flashlight it was.  We went to Target for the lights, and the entire flashlight/lantern aisle was nearly empty, along with the water/bread/soup aisles.  Seems as thought this was more serious than I thought...haha!  After spending two days preparing for the storm, it hit with high winds and on and off rain.  We got lucky with the severity, just didn't have power for much of the day, and crabby, hot kids.  We have survived the storm, and I hope I can survive the storm of this landlord as well.

Anyway, the place we have found is a two bedroom condo, and is 25 minutes from therapy.  This travel time is making it difficult for me to school Nora, so I am going to try something different this week...the coffee shop :-)

Ok, I am exhausted of these happenings, and will write more later.  Any advice is appreciated....
mariak_2198@yahoo.com.

Cheers,
Maria

Tuesday, August 30, 2016

The BIG Journey Ahead

Our family has had some tough decisions to make, since returning from Florida in April.  It went like this....
Lila, "Mommy, I want to stay here and live with Sylwia!" (Lila's physical therapist in FL)
Sylwia, "Oh, you do Lila?  Ok, you can stay here for 6 months and when your mommy returns, I will not only have you walking independently, I will have you running!"
Me...Silence...mouth dropped to the ground.

So, I spent the next three days asking a million questions about the validity of that statement.  Sylwia continues by telling me she has no doubt that Lila is capable of this, but just needs to want to work hard for it.  If she gives it her all, there will be great success.

We return home from therapy, and Matt and I enter into these very lengthy, difficult discussions about the possibility of going to FL for a length of time, how to make it happen financially, would we all go or split up the family for a short time?  Lots of hard conversations to have, but where we ended up was with one question...Will we
regret not giving Lila this chance when she is 15 and not walking independently still?  Yes, of course we would regret it!  So, the planning began.  The plan fell through a couple of times, due to circumstances of which we could not control.  We didn't know this was actually going to happen until mid-August, at which time I began telling their school and staff that we will be on a new adventure this school year.

To make a long story short, the girls and I are leaving for Florida on September 24th, and returning on February 25th.  Matt will be staying in Reno to continue working and supporting us while we are away.  He will come to visit at Christmas, but as much as he would like to, it is just too costly for him to come every month to see his girls.

After months of researching homeschooling curriculums, I have begun homeschooling both of the girls, as of August 15th.  We have had mostly great days, but a few days that have been quite a struggle.  We will work out the kinks as time goes on :-)  Since working so much with Lila, I have a deep belief that she has dyslexia, and we will now have to figure out the best way to teach a complex brain like hers.  We learned a lot last year from the neuropsychologist, as well as the brain injury specialist from school, thank goodness.  Still lots to learn :-)

As for Nora, she is doing amazing learning at home, but may come back with Matt after Christmas and go back to Verdi.  This is still a bit up in the air, and I leave it out there for a decision to be made once we get a feel for the Florida routine.  Lots to learn, and lots to navigate.  For now, she misses her friends a bit, but loves having Tuesday poetry teatime, Thrilling thursdays, and science Sundays (oh, and doing math out on the swing set!) :-)

Here's to the next adventure, as life is never dull over here!

Thursday, April 7, 2016

Nearing the end

Here we are, the day before Lila's last day of therapy in Florida.  It has been a long stay, but a very productive one!

To take a step back, Lila has issues with balance, coordination, muscle tone, long term/short term memory, and exhaustion/daily endurance.  All of these things combined make it difficult for her to remember the steps to walking, balance long enough to pull the info out of her brain, and then take the step forward (or in Sylwia's case...maybe backwards :-)).  These three weeks have proven to beat these odds for Lila!  Here is a video from the first day or two (therasuit on)....
video


She is taking an average of 45 steps consistently, and the first 20 are always a breeze.  After 20 steps, she starts to lose her balance and focus, and struggles a bit more.   I guess 4 1/2 hours of physical therapy a day, a 2-3 hour nap following each session, and the little bit of homework we could squeeze in each day, are enough to make anybody a bit wobbly from time to time :-)  All of these steps are without the suit on.  Once she put the therasuit on (which made her tired without even moving), she made a record of 75 steps!  The suit gives her extra support, but also retrains the brain to understand how her physical body should function and feel with movement.  Below is a video from earlier this week, week three (no therasuit).  Amazing the difference!

video
When I say that Lila is taking steps "independently", this may mean different things to different people.  For Lila, this means that Sylwia is on a rolling stool in front of her, with a belt around her waist for the sense of security Lila needs, although the belt is doing absolutely nothing to support her.  When others think of independent walking, they may think of walking just like you and I.  As for this, she is taking very slow/small steps, and about 17-20 at one time.  This, for Lila, is great!  We intend to keep up with the program at home, independent walking 30 minutes a day, and doing strengthening exercises all together as a family.

The amount of steps Lila is taking may not seem like a lot for some, but this means a lot for her.  We now have the tools to move forward and continue to teach her the next steps towards walking independently.  Actually, Lila loves Sylwia so much that she asked if she could stay and live with her here in FL.  Sylwia said, "You want to live with me?  Ok, if your Mom goes home and comes back in 6 months, she will come back to you not only walking independently, but running!".  This positive thinking and motivation gets us so excited, and now has us talking about what we need to do for Lila's future and independence.  Our biggest struggle right now is, and will continue to be, the balance between these life changing therapies and academics.  I am really having a hard time right now being able to foresee how to balance this all, as they are both of equal importance.  Nevertheless, what I do know is that we cannot get wrapped up in the stresses of school when we return, and have Lila lose all that she has gained.  I suppose the right answer will come to me, as we work out a weekly schedule.  Any thoughts here would be welcomed with open arms :-)

Lastly, it is a must that we do this intensive physical therapy 3 times a year, and this trip alone cost us over $12,000, which makes traveling to Sylwia very difficult.  If any of you out there have any thoughts as to how we could make this more cost effective, I would love to hear them.  Creativity in affording Lila the treatments she needs is something at which I have become quite proficient.

Thanks for following her journey...we love you all!

Friday, March 25, 2016

Florida!

Grace, Nora and Lila
Since the dodgeball tournament, we have been busy.  On March 17th we flew to Port Charlotte, FL to hang out with my Aunt and Uncle.  The girls had never met them, and they welcomed us with open arms :-)  The girls got to swim, Matt and I got the chance to kayak up the canals, and their view from their yard is amazing!  Thank you Auntie Irene and Uncle Chuck for having us!
view from yard


pool time!




















Lila began intensive physical therapy on Monday this week. She is exhausted, but has been giving it her all, as usual :-)  Sylwia keeps her laughing and smiling all day long. She has been walking independently for 2 hours a day, and then strengthening her muscles the other two hours a day.  I have a video, but it is too large to transfer from my phone.  I will try to get another this afternoon.









The girls love our condo we are staying at...pool, park, and pond with turtles and a gator in it!  Lots of friends to swim with at the pool and play at the park with :-)



I haven't been to Florida since I was a teenager.  Here a few things I have noticed:
1.  There are some pretty cool birds here.
2.  People drive like the world is ending, hence the fact that we have seen a ton of car accidents.
3.  There are alligators in every pond you come to.
4.  A lot of people like Florida, especially the snowbirds.
5.  There are people here from:
New Jersey, New York, Pennsylvania, Connecticut, Massachusetts, Illinois, Ohio, Ontario Canada, and Colorado.  At least this is whom we have run into thus far.  Crazy!
6.  People!  People!  People!  Everywhere...
7.  Just like in CA around Disney, it is quite dirty and rough.  Nevertheless, we were able to venture out yesterday and did see some pretty nice areas of Orlando/Kissimmee.
8.  Outlet malls are everywhere!  People are shopping as if they have never seen a store before!  
9.  There are some pretty sunsets here :-)

10.  Last but not least...it is very humid here!  Oh, and we had an amazing thunderstorm last night...so great :-)

As for our weekend, we are coloring easter Eggs, heading to Clearwater to meet Winter the dolphin and have a bit of beach time, attending a local Easter Egg Hunt, and resting.  Happy Easter to you all!!!!