Lila is on Fall break!

Seems like it's been a long time since Lila began school on July 23rd.  Thankfully, we have hit Fall break time, as we all need a little change for a few weeks.  I know that this is called BREAK, however, Lila always loses a ton of information on her breaks so we are going to be busy.  The first week, beginning today, Lila will attend a week of intensive physical therapy here in town with her weekly physical therapist.  4 1/2 hours a day, Monday through Thursday.  Friday will provide a nice break, and then a fun weekend in San Francisco with Uncle Ron.

Lila and Jaden

This past weekend, to kick off break, we attended the buddy walk to support our friend Jaden!  What a fun morning, including the tumble-bus and bounce house :-)  The girls had a blast, and took really long naps that afternoon!  We always enjoy this event, and are glad to help out our friends in any way possible :-)

Lila is also going to begin hyperbaric oxygen treatments today.  Monday, Wednesday, and Friday for the next three weeks.  My next few blog posts will get more in depth with what hyperbarics can do for kids with CP.

Lila being silly after church yesterday!

The following two weeks Lila will go to Goddard school from 9-12 every morning in order to keep her academics on track.  May not seem like much of a break, but will be a nice change for Lila (and I) :-)  She needs to maintain a schedule or else she just turns into a mess, so these three weeks will be very nice.  She will be able to interact with a different group of kids, and have fun with one of her favorite teachers around!  Thank you very much to Denise for affording Lila this opportunity to come to her school in October...we are thankful for people like Denise in our lives!

Great news!

As most of you know, I have been making purses for the past 1 1/2 years in order to raise money for Lila's treatments and therapies not covered by insurance.  This has been a nice avenue of revenue for her fund raising account, however is very difficult to take it to the next level when it is just one person making the purses (me, that is).  I had become very stressed trying to build an inventory and get the word out there.  So, about two or three months ago I began working with this amazing woman from church, who has sewn for 60 years now.  She is very talented, and was willing to help me make some purses and take the load off.  Very very helpful, but I had to pay her a bit for her time.

Over the past year I have tossed around the idea of beginning an Etsy (all handmade items from artists around the world) site is in order take this one step further and hopefully raise enough money for Lila to have another stem cell treatment and multiple therapies over the upcoming years.  However, this could not be done without an inventory substantial enough to support a site like Etsy...so went on hold for a while.

A dear friend of ours has recently connected me with this amazing entrepreneur in the Reno are who owns a company called Creative Coverings.  Creative Coverings is a company that makes tablecloths for events and  high end weddings.  They have a cut and sew in house, and are looking for a way to give back to the community.  LILA, I say!  They have chosen Lila to be their "charity" and are going to make purses for us using their scraps (which are awesome), at no cost to us!  HOLY COW!  We can finally gain an inventory and make this happen!  So exciting!  This will all happen over the next few weeks, and I will post samples as soon as possible.

Hope you all are excited as I am!

Full day kindergarten

WOW!  Lila is doing soooo well!!!!  She is interacting with all of the kids, raises her hands to answer questions, and is progressing in her writing, letter recognition and letter sounds.  We are absolutely amazed at her progress and capabilities, as is her teacher.  I had a teachers conference this past Monday and she is recognizing 21 out of 48 letters, has 50% of her letter sounds down, and is recognizing 6 different site words!  I have been frustrated for three years over her lack of progress, and now she is finally ready!

Lila loves to pretend to be the teacher at home, read books to the class, ask math questions, and wakes up on Saturday mornings asking to go to school.  SO exciting to see her finally becoming interested in academics!  We are not even putting pressure on her to focus and grasp concepts, like we have tried to do in the past...Lila has come around...yay!

In the past, Lila would recognize a skill as difficult, and create a diversion immediately.  Most recently I was wanting to do a homework page with her, and she said that she wanted to do some cutting instead..."because it was easier"- her own words!  This is the Lila I have known for the past four years in school.  Hallelujah, there is a GOD!  She is excited about her letter sounds, feels proud of herself when she points out letters when we are reading a book, and traces the alphabet and her name in a matter of minutes.  Boy oh boy, we are having a great year, and just started school on July 23rd!  It can only get better :-)

There was an opportunity that was presented to us whereas Lila would be able to attend a private school, very near our house, for kindergarten only, as first graders go into the school district.  We made the appropriate calls, looked into services for Lila, etc. however this did not work out.  Nevertheless, what it did do was opened our eyes to Lila's current schedule at school.  For this, I am forever grateful!  Today I had a meeting with all of Lila's therapists, the principal, her one-on-one aide, and her resource teacher.  I put this meeting together in an effort to see how we can all work together to keep Lila in the classroom as much as possible each week.  We feel very strongly about her academics being critical this year, as we have decided to keep her back in full day, typical KG and give her the chance to catch up.  It is working, and I don't want to see her stumble because we are putting too much emphasis on therapies rather than academics.

That being said, the meeting was a huge success, and we feel as though Lila is so well supported!  We are very fortunate to be where we are in the school district, and all of this would not have become so clear to me if we would not have been presented with this private school offer.

Everything happens for a reason...I whole-heartedly believe this.  I originally thought that this offer for Lila to be in a smaller program, be closer to home, and go to the same school as her sister was the perfect scenario.  Well, since this has fallen through, something so great has come out of it.  So, the original outcome I had foreseen was not the real reason that this offer was presented to us.  Funny how things work sometimes :-)  If we are lucky, Lila will be able to attend the private school while she is on her breaks, in order for her to stay on track and keep her momentum going.  This would truly be the best of both worlds :-)

Thank you God for putting people, offers, and hurdles in our tracks...just to get to an amazing outcome, no matter which way this all would have worked out!

Lots of good news....

Oh wow, I shouldn't have waited so long to write, so expect a bunch of blog posts over the next few weeks :-)

Matt and Nora on the left, Mom and Nora on the right

Where do I start....Ok, I will start with last weekend....Labor Day weekend we headed to San Francisco to see Matt's Uncle Ron.  Packed up the girls first thing Saturday morning and started our 4 hour drive.  This seems to be our max distance, as Nora gets carsick after a couple of hours.  I always forget about this until we start driving, so am never prepared.  Poor kid, she just wanted to get there and "rest on Uncle Ron's shoulder" :-)

The girls making the sea lion noises!

We had a fun weekend, but the girls weren't able to get out much.  Matt and I helped Uncle Ron hang all of Barbara's 'old world maps' in his new apartment, which was fun for me and frustrating for Matt (typical when we do house projects together...hahaha.  He usually tells me to just draw it up for him, and he will build it without further discussion. :-)  Anyway, this project took some prep time on Saturday, hanging half of them before dinner, and then laying out, measuring and hanging the rest before we headed out on Sunday afternoon.  Nevertheless, Sunday morning the girls were able to get to the merry-go-round, see the sea lions, and watch a magic show at Fisherman's Wharf.  Lucky for us, Uncle Ron lives 2 blocks from the Wharf, so it is a ton of fun for the girls to go to the city with us.

It was a bit chilly, as summers are in San Francisco, so Nora wore pants for the first time since May (she is a bit obsessed with dresses right now).  Lila is not picky, but is definitely expressing her opinion more often when it comes to what she wears.  Very cool, as we like it when she expresses her opinion about MOST things :-)

Nora on the merry-go-round

Uncle Ron recognized a big difference in Lila since we last saw him...6 - 8 weeks ago!  We have seen a change in her speech clarity, her thoroughness in getting her entire thought out (be it a bit slow), and expressing herself in her stories she tells...all of these skills have really been coming along since we started school in July.  She was sooooo tired, and he still saw a big change!  I love to hear these observations from others, because it is hard to see on a day to day basis.  Lila just keeps making huge strides each week, and we are so proud of her!

Enamored by the sea lions

Lastly, as we expected the girls didn't sleep well at all, which is why we usually only spend 1 1/2 days visiting Uncle Ron.  We have most recently stayed in Barbara's apartment which is soooo quiet, and they both have separate sleeping areas.  Unfortunately, the girls are just not comfortable sleeping elsewhere, and don't sleep in the car on the way home either!  After waking up at 5 a.m. on Sunday, Nora napped for an hour after lunch, and Lila not at all.  We left for SF around 4:30 in the afternoon and arrived home at 8:15....no sleep at all!  WHat!  Is this normal?  I never will understand it!  They were both absolutely exhausted, and still managed to sing every song under the sun on the way home, and entertain each other.  Thankfully, once they hit their pillows, they were out!

View of Coit Tower from Uncle Ron's apartment!

Fun weekend, and so great to see the girls bonding more and more with Uncle Ron!  They love him (oh, Nora asks for him weekly and always wonders what he is doing:-), and we are so thankful to have him in our lives!!!!

Working hard at therapy

We seem to be getting used to Lila's new schedule, after three and a half weeks of being in school now.  She gets a nap on Wednesdays, which helps with her focus and strength Thursdays and Fridays.  However, Lila still does physical therapy on Tuesday and Wednesday mornings, and this is what she is working on....

First week of full day school

Lila's first day of school - 6 yrs old

Last week was Lila's first full week of full day Kindergarten...a long week to say the least.  Up to last week, she was napping every day for 1 1/2 to 2 hours, primarily because she works at least 5 times harder than the average person to do normal things like walk, or stand up, or throw a ball, or just get to the bathroom.  So she is absolutely exhausted every day, and functions so much better when she gets that rest.

That being said, Lila was only able to nap on Wednesday, making for a long week :-)  Nora has been paying the price for all of the negative energy that Lila has after school each day, but she seems to always go back for more :-)

School is really going well, as over the last 7 days there have been 4 birthdays, a gingerbread man hunt (with cookies at the end), and lots of treats..seemingly each day.  This is what she thinks school is about at this point, at least this year.

Nora enjoying Popsicle time with Lila, a rare moment since school began

Today she was exhausted because we started our morning at 7:15 a.m. when we headed to physical therapy, followed by speech therapy, and then to school by 10 a.m.  Lots of walking at school...library, lunch, gingerbread man hunt...WHEW!  Makes me tired just thinking about it :-)  So, we get home around 4:15 p.m., make dinner and head straight to bed.  Bed by 6:30!  Makes for a nice productive night for Matt and I :-)

Some great comments from the teacher have come over the past week.  Mrs. Gladding is so amazed at what Lila can do on all levels.  Her stamina in walking such far distances all throughout the day, using the bathroom by herself (for the most part), cutting and gluing independently, and her social skills with the other kids.  So cool!  We are so proud of her and hope that she excels in her education as this year progresses :-)

New found confidence

The girls are happy to be back together again!!!

Having been back for a week, I have a lot to share!

Lila and I are back in our routine, and have finally caught up on sleep.  Last Sunday was our first day back and Lila surprised us left and right!  To begin the day, she initiated helping set the table for breakfast, which she had never done before.  She would get plates for her and Nora, crawl into the dining room with them and put them on the table.  Then proceeded to head back into the kitchen to get her and Nora cups, crawled towards the dining room and stopped at the fridge.  Matt and I were just in awe, so didn't stop her momentum and just watched her make the next move.  What was that next move?  She stood up at the fridge and filled their cups with water!!!  We then had to assist her in getting the cups to the table, but this was an amazing new independent step for her.  So fun to see her initiate this all on her own!  The next step is to get her walking with one cane, allowing her to hold her cup and walk to the table all at the same time :-)  Can't wait!

It was quite windy that afternoon, so she needed to brace herself :-)

The next afternoon Lila, Nora, Matt and I met friends at the park.  Matt opened the trunk and realized that I had not brought Lila's walker (intentionally), only her canes.  Lila's canes are still difficult for her, so she likes to use her walker when we go to places like the park because it is significantly easier.  So, in order to minimize the fits, Matt felt it necessary to bribe her with gum...hahaa....Lila got a piece of gum, and if we caught her complaining about her canes, or not using them, her gum would get taken away.  Needless to say, she used her canes to walk EVERYWHERE at the park without a peep.  She was so proud of herself, and were proud as well :-)

At the park, she also was climbing like a champ!  She climbed this "ladder" with ZERO assistance!

Lila has also been pushing anything and everything around the house to be able to walk without our help.  One of those things is her folding chair from her little table in the kitchen, another "walker" is her bigwheel on the back patio.  So great that she is getting creative in her methods for being upright and mobile :-)

As for Nora....she is helping Lila with her independence as well.  We are potty training Nora and today she told me she had to go potty.  Lila said, "Let's go Nora, I'll help you in the bathroom".  Such a great big sister!  She helped Nora take her undies down, and then wiped her...hahaha.  This was another proud moment for Lila.  Normally she just beats her sister up, so maybe now she will help her instead of hurting her :-)

Lastly, Lila's speech has increased in vocabulary, as well as clarity.  Yes, just in the past four weeks!  This is great to see because Lila initiates conversations, asks inquisitive questions, and has become proficient at bossing her sister around :-)  Even at church this morning, many commented on how much stronger she looks, as well as how clear her sentences are!  Another great moment for us all!

So many have asked if this was a good therapy session in LA, and I would have to say that it has helped her more than we can imagine!  Thank you Polfit!