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 :-)

Not much new here

Lila has had a cold (on and off) for the past couple of weeks, and it always seems to knock her down more than the average kid.  She has been going to be early, and we have not been getting much extra strengthening time in, due to her exhaustion.  So, she seems to be a little less motivated...for just about anything :-)  When she gets tired like this, the frequency of her involuntary movements increase, and her focus just gets lost in the haze.  So, we are looking forward to "getting Lila back" soon :-)

Hope you all are having a good November!

Will write more later....

October

We have had a fun October!  The girls have been dressing up much of the month, which has been very interesting, and hilarious.

Here are some photos of the months activities...

Mid-October we went to the pumpkin patch and  had a blast in the bounce houses.

Lila had the day off of school, so her and I went to the new Children's Museum with one of her friends.  The museum is absolutely amazing, however Lila was very overwhelmed and we lasted about an hour :-)

Lila and Hailey playing in the water trough

Girls being silly silly carving pumpkins

Halloween with Tigger and the pumpkin

Bounce house at the harvest fest today.  Lila climbed up the "stairs" by herself with ease, and went down the other side (the slide) while laughing and having a blast.  She must have done it fifteen times :-)

It's been a while....

We continue to see progress in Lila, as we try our best to do some physical therapy every day, even if it is only 15-30 minutes.  She doesn't work as hard at home as she did at the therapy program, however we are happy to get anything out of her after a long day of school and outside therapies.

Before August, we used to put Lila in the stroller when we needed to get anywhere fast, and when we had some time go get from one place to another, we would have her use her walker.  Well, now we use her walker when we need to get somewhere fast, and use her sticks when we have time on our hands!  This is an amazing difference from a few months ago.  She has a sense of independence and excitement about getting from one place to another using her sticks...check it out!

We keep taking videos, and they are too long to put on the blog.  So here is a short one that seemed to have worked.  Once Matt put up the tent, the girls played in it for a bit before nap time.  Lila grabbed her sticks, stood up by herself, stepped over the tent (area at the door where it zips), walked over to the patio, stepped up on the patio, and walked all of the way to the back door!  She is making it around so well, even with obstacles :-)

Lila's Progress

Another week has gone by, and the people that surround Lila on a weekly basis are continually amazed.  This past week we went to Lila's school to visit, and she wanted to stay for afternoon class.  So that she did, and walked with her sticks everywhere!  Her teachers, therapists, and the principal could not believe the changes in her.  It is exciting when other people see it, although you couldn't miss it I suppose :-)

Attending school was a good thing, of course, however Lila was so tired that afternoon that she came home and slept from 3:30 until 6:15 (we had to wake her up for dinner).  This was also a good thing because she got to go to school, as well as get the rest that she needs each day, however this mess up in Lila's schedule set her back two days!  The next morning she had physical therapy and speech therapy, and all they could get out of her was "NO!".  She was so tired that she couldn't even focus.  Then along comes Thursday, and she was a little better, but was in timeout most of the day for acting up, not listening, and beating up Nora!  Uugghhh!

All of that being said, on Monday we start a morning kindergarten program...thank goodness!!!!  She can now attend everyday without taking two days to recover.  We can not wait!  Lila has been asking to go to school this past week, as she is ready to learn and be with the other kids :-)  Nevertheless, since our return from LA, she has been going to Goddard School on Mondays and Fridays.  They have centers in the mornings where they learn their letters, numbers, do yoga, and learn Spanish!  It is a phenomenal program, for which we are very thankful...not to mention the loving and supportive teachers!  So, during Spanish yesterday the kids were all going around in a circle introducing themselves...
Me llamo es....and then they would say if they were....Mal or Bien (good or bad)....
Lila usually sits back and doesn't interact too much for lack of confidence that she is not going to use the right words...NOT THIS TIME :-)  When they got to Lila, she said in a very loud voice, "Me llamo Lila", and then gave the class a thumbs up and said, "Bien!".  The teachers were so surprised and happy!  This made all of us smile, as her confidence has sky rocketed with her peers, and it shows :-)

The amazing people we have met on this journey

Our Polfit crew!

This is the entire team from left to right (Dustin-a friend, Bartek, Ralph, Lila, Ania, Arthur, and myself)

We would not be where we are today without them.  I can not recommend their program enough, as it has changed our lives forever.  The energy and spirit that they all have for our children is amazing!  There is some Polish food coming for you all very soon !!!!!

Friends we met at Polfit (from southern Illinois :-)...

Amy, Lila, Maisie, and Dustin

Maisie has CP, and was doing awesome in the program.  She was walking with sticks, using the therasuit (and assistance), but with such great strength, keeping her head up and taking such perfect steps.  See, kids can do anything if you give them the chance :-)

This last meeting was such a coincidence.  At the hotel, the front desk staff was amazing, helpful, kind, and always brought a bright light to our day.  One person in particular, Nancy Ann, really connected with us as a family.  NancyAnn is an amazing 41 year old with CP.  She started asking me questions, of which I never mind answering, and then told me of her story, and I couldn't believe it!  If you were to see Nancy Ann for yourself, you would never know that she has CP!  From the time she was 5 years old to 19 years old, she attended a therapy program in Southern California.  When she arrived in the program, she could not walk independently, and 35 years ago they didn't have walkers or sticks for little one's.  So, she had her work cut out for her.  Nevertheless, beat the odds and is absolutely amazing, and an inspiration to us as a family.  Thank you Nancy Ann for all of your support and love!

Lila, Nancy Ann, Nora, and myself

We've been home from LA for almost a week now....

Again, it is so good to be home and not living like "this" any longer :-)

The car was packed!

We have had an interesting week.  A few things we have noticed....

1.  Lila's demeanor is changing, FOR SURE!  She is happier throughout each day, laughing and singing a lot more!

2.  Her processing has sped up significantly, which has led to less fits and a ton more words.  Sometimes her stories go on forever, but we are happy to listen to them :-)  The descriptive words she is using just blows my mind!  When she woke up from her nap yesterday she said, "Maybe after I go to the new school we can pack up the car and go on an airplane?".  I laughed, and replied, "where would you like to go", then she said, "Mexico"!   hahaha!  I didn't even know that she understood that we were going to Mexico for her stem cell treatment.  It's all in that little head of hers, and now she has the ability to get it out...yay!

3.  Her sleeping patterns are back on track, thank goodness, which has led to the energy level increase and patience level change.

4.  Lila began her weekly PT this week, and her physical therapist was very very pleased.  First off, she walked everywhere with sticks, including from the car all of the way back to the PT room.  Her strength has increased significantly, as has her motor control.  The way her therapist described this change is like this:
Lila never had the ability to process any sensory input that comes from her muscles to her brain.  Not now!  Now she has the ability to process when she is losing her balance and correct it herself.  Two months ago, Lila could have never done this.  By the time the lack of balance would have processed, she would have already fallen.  The great thing about this change, is that it is DIRECTLY related to the cerebellum!  This is the area of the brain that we need the stem cells to do their best work, and it is happening!  Chills :-)

5.  Yesterday was the first day that we tried to resume Lila's PT strengthening exercises.  I was horribly unsuccessful in the morning, with a total of 20 minutes until she had enough.  Then Matt came home and rallied in the evening, and she had a blast with him.  Yay!  He got her to do 45 minutes to an hour of strengthening exercises, but only because he told her that he would act like Bartek (one of her therapists at Polfit).  It was so funny to hear him try to do a Polish accent, and physical therapy moves with Lila.  Hilarious!  Bartek, if you are reading this, I will try to take a video next time so you can see this mess (hahaha).
That being said, she has gotten a few bike rides in this week, and we have added weight to the back :-)

6.  Lila was at school today, and her teachers were so surprised at how attentive she was during Spanish, as well as circle time with letters and numbers.  Much more interactive... answering questions with more speed than before, and singing in line with the song, and not a verse behind.  So great.

7.  Since we've been home, the girls keep calling this "our new home".  They must have thought we moved, because they still are talking about the hotel, swimming pool, and the fact that the hotel was our home.  Funny, as I am having a hard time convincing them that this really is our home and we will be staying here for a while.

7.  Lastly, the girls have been having fun this week with their new found cowboy boots (thanks Britt :-), and Halloween costumes.  I worked all day Wednesday, while Matt stayed with the girls, and I came home to this :-)  Gotta love him!

Nora loves to dress up, and is always wearing shoes, anyones shoes!