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 :-)



Sunday, March 2, 2014

"Fun"draisers coming up!

Lots happening over here...
First off, the preparation for the dodgeball tournament is in full force.  We have finalized a date and location:

SAVE THE DATE!!!!!
Saturday April 26th
9:00 - 1:00 pm
Northern Nevada Juniors Volleyball
1575 Linda Way
Sparks, NV  89431
More info to come, however be sure to get your teams together, costumes together, and balls together!




SAVE THE DATE!!!!!
Saturday May 10th

Secondly, our dearest friend and supporter is rallying for a Mothers Day Weekend fundraiser in honor of Lila.  Save this date as well, and bring your girlfriends, mothers, aunts, and sisters for a fun afternoon of Bunco and lunch!  More detailed info to come.



Thursday, February 13, 2014

fun filled February

It has been great to be back home from therapy, and we have had fun together since our return.  Last Friday the girls and I made Valentine's Day cookies to give out to their friends at church on Sunday, and made a special heart note to give to their Daddy when he got home from work.  He was so excited and felt so loved (as a lot of times when he comes home, the girls are crabby and have just woken up from naps).  Wish I had taken a picture of that, but slipped my mind.  Nora wrote, "Happy Day to you Daddy!".  So great!


Then on Saturday, Matt took the girls to the Children's Museum while I worked all day.  They played for a few hours at the children's museum, and a couple of Nora's friends were there too!  Lila and Nora love the children's museum, and always make time for climbing in the clouds, as well as painting on the glass wall :-)

This weekend we have swimming lessons on Saturday morning, which they are always looking forward to, a birthday party on Saturday afternoon, and church on Sunday.  Full weekend of fun and excitement once again.  Matt and I have decided not to go out for Valentine's day, but stay in and watch a new movie with the girls.  We will enjoy a family Valentine's Day, and maybe he and I will grab dinner together on Saturday night.  We just really love spending time with the girls, and it doesn't seem to happen enough, so we best cherish it while we can :-)

More big news of February...Lila lost her first tooth!!!!  I am sure most of you have thought that she lost her
two front teeth a long time ago, but that did not happen by itself.  We had to have both of those removed.  One because she kept losing her balance while crawling, chipping the tooth further and further down until the nerve was hit.  The other because her and I were playing in her bed and she jerked her head, hitting the headboard and basically knocking the tooth out (the dentist just did the final pull).  So, this tooth that fell out was from the natural progression of any little girls maturing little mouth :-)  So much fun!  She was terrified at what would happen, how it would feel, and where it would go.  So, the first night we realized that it was loose, she said to me, "Mommy...", I said, "Yes Lila"...., she responded,"So, when my abdomen falls out...".  I was laughing so hard at that point that she could not even finish her sentence.  Really have no idea where she was headed, but it was so cute that she was thinking about the loose tooth in such an abstract way :-)

Hope you all have had a wonderful February as well!!!!

Thursday, January 16, 2014

Last day of therapy

Lila has done great this week at therapy!  When we arrived three weeks ago, Lila had taken three (or so) independent steps at home and therapy in Reno.  Since working hard for three weeks, she is taking 7 consistent steps, and now we have the tools to work with her at home every week in her pursuit of walking independently.  She is very motivated and excited to have acquired these new skills.

One issue with her not taking more steps is that her balance isn't quite there in terms of walking independently all of the time.  This is something that is learned behavior for her, and likely will take more time.  As her brain matures, these skills will make more sense to her.  We also hope that her next stem cell treatment will help heal those "damaged neurons" that are in the way of her motivation :-)



Anyway, she has enjoyed her time here in LA.  The Polish team at
Polfit calls her "Lalonia", beautiful little doll, because she keeps them smiling and laughing all day long.  Lila loves the team here, and they take to her more and more each time we come.

Three week therapy

Lila began a 3-week intensive therapy program on December 30th, and will end this coming Friday.  It has been amazing and eventful all in the past two weeks.

Matt and Nora were here in LA with us for the first week.  This provides for a lot of juggling with the two kids, and a lot less sleep for Lila.  Although, this was the first trip that they actually slept in the same space and did not bother each other like in the past.  I would say it was quite successful overall, but Lila has been much more relaxed since Nora went home.  I don't possess as much energy as Nora, of which Lila feels like she has to keep up with :-)

Prior to therapy, Lila had taken three or four independent steps.  This was not very consistent, but sure made her motivated and excited.  Since we came to LA,  Lila has taken 6-8 independent steps!  She was extremely happy with herself and ready to do more work on Friday last week.  Nevertheless, it turns out her therapist gave her a pretzel very near the end of her first session, and we nearly ended up in the ER.  Just when I think she is in a safe environment, and everyone knows about her severe allergies, I am reminded about how close I need to watch her every move.
This is very difficult for me because there has been much judgement passed in my direction with how closely I have to watch my kids.  Even if I stress the severity of her allergies, this means different things to different people.  Some don't believe me that she will end up in the ER from just eating a pretzel, or a piece of cheese...well rewind to Friday.  I wasn't right next to her during this therapy session, and the therapist apparently thought it was no big deal.  One pretzel for Lila means anaphylactic shock.  So, we promptly left therapy, headed to Urgent Care (or I like to call it, "not so urgent care" which didn't have an epipen anywhere!!!), and then were on our way to the ER with very labored breathing, hives all over her face, swollen itchy eyes, and tons of sneezing, when Lila vomited up the "poison" all over the parking lot.  There was still a bit of swelling, but her breathing went back to normal so fast.  Her and I stopped, waited for a few minutes to see how she was doing, and decided to go back to the hotel room and take a bath.  She felt much better, and we took a homeopathic remedy once returning, which took the rest of the swelling down, what was left of the rash and altered her breathing within minutes.  It was crazy!  After a long nap, she was finally back to herself.  That all being said, there was no therapy on Friday :-(

I hope there are other parents out there that are educating their families and support systems about allergies, and helping people to understand how to care for our kids.  I am sorry to go on these rants, but it seems that the most hurtful and judgmental comments have come from the people that should understand the most.  If anyone has any ideas for educating our families and support systems, please share :-)

So, we are back to therapy this week, and Lila has recovered from her episode last week.  She is ready to go and very happy to be here!