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!!!!

Friday, March 4, 2016

Dodgeball 2016!!!!

















2016 Dodgeball...the best event yet!!!
Congrats to Men in Tutu's!!  First place!

This was our 5th year raising funds for Lila's treatments and therapies, and the support and love felt
this year was above and beyond!  It is amazing what can happen when you give back, as our funds raised have doubled two years in a row.  This years final total is $15,766, of which will be divided evenly between Lila, Lennah and Scarlett.

Some of you came out with outstanding costumes!  Some of you came out with your beer drinking arms in order!  Some of you came out with strong, supportive hugs!  Some of you came out with awesome posters and masks...typical athletic supporters!  Some of you came out to lend a hand for the day!  Some of you offered your business services!  Some of you came for lunch and some good laughs!

Any which way you look at it, the event would not have been a success without each and every one of you.  From the bottom of our hearts, I scream from the mountain tops....
THANK YOU ALL!!!!!


This journey with Lila has completely changed our perspective on life.  I know this sounds cliche, but the small stuff really truly does not matter.  Lila has taught us to appreciate each and every little milestone, enjoy spending time together as a family, not to worry about the amount of money we have (or don't have), to look at experiences/therapies/medical treatments as opportunities for growth, and smile at the small stuff.  She gets up and faces everyday with a smile, as her joints hurt, neck and shoulders hurt, she can't get her words out fast enough and exhibits such patience.  Lila walks with her quad canes and falls often...she just gets right back up and keeps moving along.  Lila has the best peers ever...they wait for her to get a full sentence out, encourage her to answer questions, and teach her that she is capable of doing exactly what they can do.  In her eyes, her life is great and she is no different than anyone else.  Her life is full of laughter, singing, performing, dancing, reading, swinging, biking, and playing with her friends, just like any other kid.

I would like to encourage you all to spend as much time with your kids as possible, appreciate your friendships, value everyone for who they are and not for what you think they should be, and when you fall...get back up and keep on going!




Sunday, February 7, 2016

video

Lil'a new adventure for the winter season :-)  She was flying down the hill with Matt yesterday, and didn't want to leave.  "Can I go up the lift one more time?" was her phrase for the afternoon.

Hope you all are enjoying winter as much as Lila is!

Friday, January 15, 2016

Welcome 2016!

We are excited at the thought of a new year, with new possibilities ahead.  In order to make those possibilities happen, we are hosting our 5th annual dodgeball tournament!  Lots of fun ahead...

If you are interested in playing, participating, donating, or volunteering please let us know.  If you are looking to sign up a team or donate, there is a button at the bottom of this page that says "donate"...this is where you pay to sign your team up for the tournament.

An update on Lila.....

Lila is now 9 1/2 years old.  She is in 3rd grade with her typical peers, and has really matured a lot this year.  She is walking with quad canes all over the school, grocery store (unless she is pushing the cart all over the store), house and church.  She uses her walker at places like the airport, hiking, park, and longer distances on the school grounds, and her cerebral palsy does not slow her down :-)

Lila continues to amaze us as she reads her chapter books, corrects her sister when she hears her get stuck on a word, knows who the president of the United States is, talks about the United States and going to "Yew Nork", and sings songs about the 7 continents and inferring information in a book.  She is just a sponge for information right now :-)  Such a fun time!  She is also very proud of herself as she learns more about multiplication, and corrects her peers when they are having trouble reading. She is an amazing kid, who deserves love, happiness, and acceptance from everyone...as she gives this to everyone she encounters.
Lila LOVES music!  She loves to dance and sing more than anything else in this world.  She loves to wear dresses and look pretty, and craves play dates with her friends.  Lila's friends are so good to her and really feel like she can do everything they can.

This year brings a whole new realm of therapies for Lila.  We are starting scalp acupuncture once a week, and are going to intensive physical therapy in Florida in March/April for 3 weeks, neither of which are covered by insurance.  We are going to FL to see this specific therapist who really focuses on strength and walking.  He has gotten Lila so far in the past, and we look forward to the progress she will make this time around.  Although this trip is exciting, it is going to cost about $9000 total.  The dodgeball tournament is our main fundraiser each year, so we look forward to being able to lighten some of that financial burden.

The best part of this trip is that we will get to see my Uncle, Aunt and cousins, whom have never met Matt and the girls.  We will do this a couple of days before we start our three weeks of therapy, and are very excited for this connection :-)

This year is not all about treatments for Lila, but fun as well.  Next week we begin skiing every Saturday morning for 8-10 weeks at this local program called Sky Tavern.  It is a non-profit and is made up of all volunteers and parent support.  Nora is counting down the days before she can ski, and Lila is quite apprehensive.  This will be amazing for Lila's core strength, as she will be on a bi-ski with an instructor behind her guiding the ski.  Matt trained last weekend to be part of the special needs volunteer program, and decided to take the bi-ski up the lift and try to guide it down the hill.  Thank goodness nobody was in the sled because he said it was like an episode of "Jackass"!  I wish I could have seen it :-)  He ran the sled into the ski lift pole, and fell more than he has in many years!  By the end of the sessions, he will be a pro I am sure, and will be so happy to be able to ski with his little girl (who most dr.'s thought wouldn't even walk or talk)!  We are so blessed!

Happy New Year!

Thursday, May 14, 2015

2014...Where did you go?

I know it has been a really long time since I have written, and I apologize for that.  2014 presented us with lots of stresses, challenges, and changes that needed processing.  Here is a recap...

1.  I had three design jobs that had taken over my free time, and more.  This led to me dropping the ball on Mom duties and parenting challenges.  We realized that this was not a good thing, and that I should really take jobs sparingly for a while.  These jobs were complete at the end of May, at which point I promptly had to begin packing to move by the end of July.  Our landlord sold our house, so we didn't have a choice.  We had a very hard time finding a home in our neighborhood, where we love to be, so were discouraged and stressed for a couple of months.  6 days before we had to move, we found a place a few houses away from where we were living :-)  Whew...thank goodness that worked out, although we had a month between when we moved out and could move into our new place.

Thank goodness a dear friend from church opened her home to us, and gave us a safe place to land for that month.  She has helped us more than she will ever know.  The kids love her, and loved exploring a new neighborhood :-)

In September we moved into our new rental.  Love it!

2.  For the past year, Lila and I have been going to a local woman to do energy medicine work on us both...Jin Shin Jyutsu.  It is amazing!!!!  I have found my new love, and passion.  In May, I was able to take a 5 day course on Jin Shin, and have been engrossed in it ever since.  The teacher from the 5 day course lives in Boulder, so we went for a week visit over the October break.  Lila had Jin Shin twice a day for 6 days.  Amazing changes :-)  Eventually, I would love to practice Jin Shin here in Reno, but have some schooling to complete before this is possible.  Beginning classes in the Fall, and so excited for this new adventure!


3.  Matt went on an amazing fishing trip with his Mom to Alaska!  They caught a lot of fresh fish, saw a ton of whales, and brought home some good eats :-)

4.   Matt began interviewing for this position at University of Wisconsin in their facilities department, which meant that we only partially moved into our new home.  After rounds of phone interviews, and a face to face interview, he ended up taking the job and quitting his position here in Truckee as of December 19th, scheduled to start in Madison on January 12th.
Goodbye Matt!  (oh, and Hello Matt again :-)

5.  Since July, we had been speaking frequently with doctors to schedule Lila's next stem cell treatment.  These were deep, involved conversations, with a lot of stress surrounding this big decision for Lila's health and future.  It was supposed to happen the beginning of December, but got pushed back until March 2015.

6.  In October, Matt gave me a weekend to go up to Truckee to my favorite art retreat...Create Explore Discover.  This is my favorite weekend of the year, as it allows me the opportunity to relax, be creative in a supportive environment, and take some time for myself :-)

6.  For the Holidays, we went on a road trip to the coast of California from December 21st to Januray 2nd.  This was amazing!  We took our travel trailer and went from Pismo Beach to Big Sur to Monterey to Costanoa to Belmont to SF.  Ending this amazing adventure visiting with our favorite Uncle...Uncle Ron!






















5.  On the first day of our road trip we received a call from Lila's stem cell doctors that she can have her treatment on January 8th!  Holy Moly!  So, we discussed the timing in relation to when Matt had to leave to begin his new job in Madison, as well as the timing with school break, and ultimately decided to do it.  I immediately went online to book flights and accommodations.  What a whirlwind!  I then realized that we would get home from our road trip and have to turn around two days later to get on our flight to San Diego.  WOW!  So, we rallied and Lila had her stem cell treatment on January 8th.




6.  Following a stem cell treatment, it is recommended that the patient do intensive physical therapy to feed those cells the oxygen they need to grow and develop.  We were already scheduled to do therapy here in April, and had some amazing friends switch around with me to get us in during the month of February.  We did this, so that we could move in March.

7.  As for the move...Matt began his job on January 12th at U of W.  A few things happened within the first four to six weeks of the position that ultimately led us to where we are today.  First of all, the Governor took away all habilitative care from University insurance, as well as medicaid, meaning that Lila would not get any of her therapies and services that she needs to move forward.  The Governor also announced $300 million in budget cuts to the University this year alone, limiting Matt's potential for pay increases and advancement.  Secondly, the cost of living is far greater than here in Reno.  Last year the cost of housing in Madison was around $170 to $190,000 for a modest ranch home...today these same homes are $240 - $260,000.  The cost of housing and groceries has significantly risen since our research began, limiting us as to how we were going to move forward and set down roots.  Lastly, after an HR meeting four weeks following the beginning of Matt's employment, it turns out that he had miscalculated his monthly net income, which made his income unlivable for a family of four with a disability and special diet needs.  This was an honest error, which catapulted us into this adventure, and I believe that Matt needed to go and see if this was where we belonged as a family...making this a good mistake in all reality.  We couldn't live on his income, couldn't buy a house, let alone afford to live monthly after the ridiculously high rents (58% of his monthly income), and Lila would not have gotten what she needed to progress and become an independent adult.  As the rug got pulled out from underneath us week after week, we realized that this was not the place for our family.  I am sincerely sad that we will not be closer to my family and dear friends that I grew up with and went to college with, nevertheless there are always long summer visits to be had in the future :-)  The door is ALWAYS open here in Verdi for you all to come visit whenever you like!  Tahoe is calling you all :-)

8.  Matt and I truly are at peace with this very large decision we have made to remain here in NV.  We hope to buy a house, or even some land and build, to be able to set down roots and enjoy the amazing mountain surroundings we find ourselves in every day :-)

9.  Lastly, I have a creative burst that I cannot seem to satisfy, so have decided attend a vendor show (Reno Mini Maker Faire) on May 30th.  Been painting, glueing, sewing, and crafting for the past couple of months.  So fun!  Hope to see you all there :-)