Day four of therapy

Here is how we began our day...

Lila throwing a fit on the floor at 7:30 a.m.

Lila now has not napped in 6 days, and is really a total mess.  She went back into bed two times this morning to regroup and see if we could start the day over again, getting up on the right side of the bed this time.  Didn't totally work, but here we are at therapy.  Przemek said that she is the weakest today, as compared to the past three days.  She is falling over a lot, and can not seem to catch her balance.  Bummer.  So, I went to the store to get a remedy for restlessness, a sleep aid that I hope will allow her to relax and nap today.  Because she is so restless, she is also waking up between 5:30 and 6:00 a.m...seems like the less sleep she gets, the less the duration is of her sleep (if that makes sense :-)  WOW!  Double whammy for her!  Hope this remedy helps her :-)

The first 30 minutes of therapy went well, as she is really gaining more control of her balance.  Watch and see :-)

As for the rest of the morning, not so good.  The only good thing that happened following this video, was that after therapy I decided that Lila could eat her lunch in the stroller while we went for a walk along the lakefront.  It allowed me to get some exercise, and her to relax a bit before heading back to the hotel for a nap.  She is in bed right now, so the verdict is still out as to whether she'll get some rest or not :-)

Thankfully, Lake Pontchartrain is only 5 minutes from her therapy, so we can plan to do that every afternoon...yay for me! :-)  Next time I will bring my camera, as the architecture along the lake is pretty amazing...different from anything I've seen before.  The homes have captured me with floor to ceiling doors all along the fronts of these homes, bordered by floor to ceiling shutters all in bold colors.  I will take some photos over the next day or so :-)

Until next time, have a great day!

Better Day :-)

Got sleep last night :-)  Yay!!!!  Lila didn't get as much sleep as I did, and is very fatigued, but my mood is better and can deal with her lack of sleep in a more controlled manner :-)  whew.

As for therapy, even though she is exhausted, I can see improvements even after three days.  Przemek (pronounced "Shemek") is her therapist and is extra hard on her, which makes her get a little out of each visit, even in the state of exhaustion.  She gets frustrated with him, but inevitably does what he needs her to do.

One of the best quotes I received yesterday, in my frustration and lack of sleep, was from Uncle Ron.  It goes like so:
"A quiet mind through joy or pain is like a grandfather clock that keeps on ticking in a thunderstorm".  We are all going through our own thunderstorms but we must keep on ticking.  Stay strong and keep a quiet mind. 


This has helped me more than he could ever know....THANK YOU UNCLE RON!

So, hoping for a nap, but has been a good morning thus far :-)

Day two of therapy

How am I?  Frustrated...uugghhh.  I hate feeling like this towards Lila, but she is refusing to nap.  This may not mean much to other parents with 5 year old children, but with Lila this leads to a little girl whose muscle tone declines by the minute, her lack of control of everything from walking to eating increases, and her whining seems to take up every word that comes out of her mouth!  Uugghhh.  When she doesn't nap, she also does not focus well, or focus at all, and is not giving any effort towards her therapy, for which we came across the country.  Oh, so frustrating!  So, I need to turn my attitude around somehow, even thought she is consistently talking back and not listening at all.  What to do?!?!?!

Anyway, we have completed day two of therapy, and the therapist is very good.  He pushes her, which isn't going well with the lack of sleep, however is good for her to have to work as hard as she possibly can at that moment.  Here is a little tid bit:

I will post more as the weeks progress.  Once I can catch up on sleep, maybe I can turn this frustration around :-)

HAPPY NEW YEAR!

Goodbye 2011, welcome 2012!

As I write from our hotel room in Louisiana, I can't believe the year is already over.  In 2011, I had acquired a new full-time job...fund raising, as well as Lila acquiring new physical skills....walking with sticks, and Nora acquiring new words..."Lila, why are you crying about it?", and Matt acquiring his contractor's license in CA.  Wow, what a year!

Here is a photo of Lila early 2011.....she couldn't even balance enough to move away from the couch...

Here is a video of Lila today (so sorry it's sideways - one of these days I'll learn)....January 1st, 2012....

...the day before beginning her second round of intensive physical therapy.  We will be here in Louisiana for the next three weeks, doing therapy every morning for three hours a day.  Unfortunately, the program in LA did not have any openings until February 1st, in which case our insurance physical therapy visits would have already been used up.  This means that the insurance would cover absolutely nothing, just as they did last September.  Not an option, which is why we find ourselves currently outside of New Orleans in Louisiana.  Lila and I are staying at a Residence Inn again, so if there is anyone out there who has some points that they would like to donate, drop me an email and I will put you in the right direction (mariak_2198@yahoo.com).  We currently have 7 nights of our 21 nights taken care of :-)  THANKS in advance :-)

Nevertheless, so much to be thankful, and so many people to thank in 2011...the list is endless.  Please know that our thanks and deepest gratitudes go out to you all, as we begin this new year in our journey to help Lila be more independent, and reach her highest level of success in life.  Our family has just extended across the Country, as you all are now part of that endeavor :-)

One last thing...I have been waiting to figure final numbers from our fundraising in 2011, but have not gotten all of the info in my hands as of yet.  What I can say is that we have definitely raised $44,000!  Holy Cow!!!  Can't even believe it!  Thanks to some generous donations at the end of the year, we are able to attend this program.  So, following this program we should have about $8000 left to build on for Lila's next stem cell treatment.  So exciting, and so thankful!

Much love to you all, as together we begin this New Year full of promise and excitement!!!

Merry Christmas to you all!

This year has crept along, yet flown by all at the same time.  I can't believe that I am saying Happy Holidays to you all already!  Seems like we just decided to begin fundraising for Lila, her treatments, and therapies, all of which are not covered by insurance.

Lila did not take off her scarf, or drop her candy canes all morning, and this wagon was the hit of the day :-)

Our day today has been wonderful!  For the first year, Lila was full of excitement (thanks to Nora), they laughed a ton, played together more than ever, and both took naps :-)  Couldn't have been better :-)  We hope you all had as great of a day with your families and friends.

Last night while Santa stopped by Ty and Soupha's house!

Last night we went to Ty and Soupha's house (great friends of ours), and had the best time with all of the kids!  Santa decided to pop in while on route to all of the other kids houses for Christmas Eve :-)  Lila got right up onto his lap, but Nora still was unsure about this crazy guy with all of this white hair!  She kindly shook his hand...we'll take it.  I don't know if it is the ages of the girls right now, but this was the least stressful holiday to date!  We had our fair share of coffee this morning, had a relaxing night yesterday with friends, and have truly enjoyed being together during this holiday season :-)  Love it!

On our way to see Annie at the theater a few weeks ago

We want to say Happy Holidays to you all, and thank you for ALL of your support!  We could not have done it without each and every one of you!  Lila's life is truly changed FOREVER!!!!  Her processing has sped up significantly, she now has new forearm crutches that will accommodate her most recent growth spurt, while her focus on balance and coordination has grown tremendously as well :-)  This is all due to your generosity, love, and support...and I don't mean this only in the monetary sense.  The love, compassion, excitement, tears, laughter, and genuine hugs that we have received over this past year have been insurmountable, for which without we could not have kept so positive.  THANK YOU!!!!


(I am working on one final post for the year, including a financial update...you all will be blown away!!!  Stay tuned)

It's been a long month

Sorry I have been missing from the blog for so long.  Since November 1st I have been in over my head with purse making, getting ready for three fundraisers (that were all held in less than a 24 hour period), and managing to get gifts to send back to the Midwest and Northwest.  Wow!  Seems like November didn't even happen :-)

On the upside, we had three fundraisers for Lila last weekend, and raised over $1300 for her continued therapies and treatments.  We are so thankful for all of the support and love that has come her way this year.  You all have been an integral part of changing a little girls life forever!  Wait, one step back...during the month of November, it seemed as though we had "lost" Lila.  She was sleeping an unbelievable amount of hours.  After going to bed at 7:00 p.m., I would have to wake her up at 8:00 a.m. to go to school.  She wanted to eat continuously, was not able to balance no matter how hard she tried, was very spacey at therapies, and I was getting a little worried.  After mentioning this to her physical therapist, she assured me that Lila was going through a growth spurt, and kids with CP have inconsistent growth between their muscles, tendons and bones, and would be fine in no time.  Sure enough...we "got Lila back" just 2 days ago!  It is nice to have her initiating balancing independently, telling stories all day long, wanting to do fine motor activities, and singing like she has never sung before.  Whew...internally, I was a bit scared.  Thankfully, Libby knows her stuff, and made me feel a lot better :-)

Back to fundraising...thank you to Ivye for opening up her house to all of us vendors on Friday evening.  I had such a good time hanging out with the girls from church, and sharing Lila's story with our community.  Saturday morning was the sign language class organized by Patty Orr, a dear friend.  What a great idea that was!  There were about 30 people in attendance, and based on the response, they all had as much fun as we did!  We were all laughing a ton, and enjoyed changing rooms and learning different groups of signs.  At the end of the class, we all went into the auditorium and signed The "12 Days of Christmas" together, which was hilarious...Lila would always just wait there doing the sign for tree, anticipating that each verse ended in "a partridge in a pear tree"...hahaha!  A huge thank you goes out to the sign instructors, of which were all volunteers!  THANK YOU ALL!!!  At this event, we were selling 2012 signing calendars, of which we have about 40 left.  The photos below are of a few of the pages in the calendar...so cute!  If anyone is interested, they are $15 and I can get them to you ASAP.  I would be happy to send them as well :-)

Lastly, an old friend from Chicago, who also happens to live in Reno, hosts an artists fair each Christmas and it is called "Handmade Holidays".  This was located at her home in South Reno, and was such a nice, quaint event.  There were three other artists, and myself, with items on display, and all of the guests were so kind and generous.  I sold lots of purses, and was able to get the word out about Lila and her treatments, always hoping that the word will spread and I will be able to help another family who is struggling with these tough decisions as well.  Just a great afternoon all around!  Sarah also was so kind in creating a raffle basket with items from each vendor, of which all raffle ticket sales went to benefit Lila!  Thank you so much, Sarah!  So wonderful spending the afternoon with you :-)

That wraps up the past could of weeks.  Had a good Thanksgiving with Mor Mor, seemed to fly by, and looking forward to a peaceful Christmas with the girls :-)  Lila and I may be headed to Louisiana for another intensive PT program on December 31st, but still working out some of the details on that one.  The therapy would be 5 days a week, for three weeks, and the cost of accommodations is throwing me off, so hopefully tomorrow I can come up with a solution :-)

Happy Holidays to you all! I promise to give updates more frequently :-)

Lila's cold is gone!

Yay!  Lila's cold is gone, and we have our motivated, happy child back :-)  Here is a video of Lila doing some of her exercises one night last week...

She actually likes the time in the evening when we do her exercises.  She asks to do more, and is so strong!  We usually do 30-45 minutes, with lots of leg lifts, hamstring strengtheners, sit-ups, and "snake" pose (cobra in yoga).  Most of the time she directs the exercises, and tells me what is next :-)

Last night we had some good friends over for dinner, of whom she likes to call Bethany and "Josh-any".  Josh has spina bifida and is in a wheel chair.  So, after dinner Lila went up to Bethany and said, "will you play a game with me, Bethany?"  She of course was up for anything, so asked Lila which game she would like to play.  Lila picks the most difficult one for herself and Josh to play...Hide and seek!   hahaha!  It was quite funny seeing Bethany help Lila hide, and Josh try to roll around and find them!  We had lots of good laughs :-)

Last week we also had Lila's developmental kindergarten IEP review (individual education plan...every special needs kid has one).  It went amazingly well!  We have had good reviews in the past, however she had not necessarily met the bulk of her goals, nor seemed to be moving forward all that fast.  Well, this time around, the teachers and therapists all said that Lila is engaged 100% of the time, and never spaces out at school!  (This was a problem for her before the stem cell treatment, as they would have to redirect her a lot)  Not anymore!!!!  She is answering questions equally as fast, if not faster, then the kids in the class, and singing every song in line with the verses in the song (not a verse behind like before).  Lila has met 90% of the goals from her previous IEP review, and is making great strides.  She also goes into the regular kindergarten class on Monday, Wednesday and Friday of each week, for 30 minutes to an hour each time.  The kids absolutely love her, and fight over who gets to sit next to her and help her with the daily project :-)  Her favorite thing to do in her classroom is pretend like she is the teacher.  When they have free play, she grabs a book and goes to the front of the room, asking the kids to point out specifics in the book, and raise their hands...hahah!

My last Lila story for the day....Matt went into her bedroom yesterday morning, upon her waking, only to find her acting out the classroom setting, once again.  Lila was standing on her bed, leaning against the wall, while pretending to point to the blackboard on her wall.  She was directing the class to start their day like so:

On one final note, today is Nora's 2nd birthday!!!  Wow, I can't believe that it has been 2 years.  For the past two years, on her birthday I reminisce about the day Nora was born.  It was a very snowy day...the first storm of the season.  It snowed at least 6-8 inches here in Reno, which is a lot for this time of year, and was a consistent snow-fall all day long with a peaceful calm about the day.  I gave birth to Nora at home in a "pool", which made for an amazingly comfortable and quiet environment, and one to happily look back on and smile. Her 1st birthday also brought in a huge snow storm, as did today :-)  The calm and quiet of the snow always reminds me of her :-)

Love my girls :-)