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!

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 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 :-)

Mt. Dora lighthouse

Gallinule on Lake Dora


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 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 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....