Sunday, December 25, 2011

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 all will be blown away!!!  Stay tuned)

Thursday, December 8, 2011

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 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 :-)

Sunday, November 20, 2011

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 :-)

Thursday, November 10, 2011

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....

Wednesday, November 2, 2011


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 :-)

Saturday, October 29, 2011

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 :-)

Saturday, October 15, 2011

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 :-)

Monday, October 10, 2011

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

Friday, October 7, 2011

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!

Monday, October 3, 2011

Day 59 and 60 - two months following the stem cell treatment!

We are home!  We are home!  We are home!!!!  Wow!  What a great feeling.  All four of us are so happy to be home, and Lila was happier today than we have seen her in a very very long time (maybe even a year or so!).  She is walking everywhere with her sticks...into daycare and back to her room, across the street to see the neighbors, and even walking around the kitchen and entry area holding one hand against the wall, and the other on her baby stroller!  Her balance has really taken a turn for the better!  She has never been able to walk around our central wall downstairs, without a ton of assistance.  Now she walks around it with EASE!

Lila had so much fun with Bartek...they were very silly together!
We are so thankful for our team at Polfit, of whom are quite confident that Lila will walk on her own one day!  That is a heavy statement, and each one of them had said it at separate times :-)  This gives us joy, even if it doesn't happen in the near future.

Bartek (photo on the left) participated in two different therapies during each day with Lila.  He would mess with her a lot, and she would giggle continuously :-)

Arthur, on the other hand, was Lila's boyfriend.  She would ask if she could start working with Arthur in the morning, and not Bartek or Anna!  She would get very starry-eyed when Arthur came around...hahah!  Love ya Arthur :-)

Then there was Ania.  I loved Ania!  She was very hard on Lila, which made Lila not want to work with her each morning, but once she got started she loved her.  In the car on the way to therapy, she would say, "No Ania!  No Ania!", and I would reply with the fact that I do not make that decision, and she will have to tell Ania.  Yep, that didn't go over...she would just smile when she saw Ania....stinker!

Arthur, Ralph, and Bridget
Ralph...Ralph didn't work a ton with Lila, but gave us tons of great advice and support!  He taught us about the importance of her form in walking, as well as strategies for working at home.  We are very thankful for him as well....congrats again, Ralph, to you and your wife on your new baby girl!

Lastly, Bridget....oh, I am so thankful for Bridget!  She is an amazing Mom of a 13 year old with CP, and is a very hard working volunteer at Polfit.  Her and I had some very long, in depth conversations about stem cells, therapies, CP, etc.  Bridget just got back from taking her son to China for a stem cell program.  I was so pleased that she came back our last week of therapy, as it was great getting the chance to finally meet her and share in our joy for our children.  She is truly an amazing inspiration and someone whom I hope to remain in contact with for a long time :-)

I have another great photo of the group all together, including Anna, but am having trouble locating my camera.  Still unpacking, so will put that up once I locate it :-)

Thank you team!  We'll definitely see you again :-)

Day 58...last day of therapy!

Wow, what a month it has been!  To recap:
1.  We started intensive PT four weeks ago and all Lila would say is, "no, no, no".
2.  Lila would not walk for them at all, let alone in the walker.
3.  She would not put the therasuit on until week three.
4.  She would not do exercises in the universal cage unit until week four.
5.  She needed to run the show in each exercise.

Now Lila is:
1.  Saying , "let me do it myself, and yes, yes, yes"
2.  Lila is walking independently with sticks!
3.  She asks to put the suit on, and walks all over the office with her sticks, all while smiling and laughing.
4.  She LOVES doing exercises in the cage, and is lifting 2.5 lbs per leg with each session of exercises.  With both legs strapped together in a brace (giving her more leverage), she can lift 7 lbs total!
5.  Lila still runs the show, of course, but with enthusiasm and excitement for what she can now do!

What an amazing journey it has been for her.  We are so blessed to have such supportive friends and family, that of which donated generously in order for Lila to have this opportunity!  There are no words to express our thanks!  We are thankful to our cores!

Thursday, September 29, 2011

Day 56 & 57

Lila has one more day of therapy before we head home.  She is a bit hesitant to do anything without the therasuit on, or spider hooked-up, but we are trying to give her the confidence that she can do it independently :-)  This will take some time, but she took two steps today towards Arthur.  That was a big deal for her!

We are excited to get home, but will miss the friends that we have met here through the program.  The Mom's have been great, as well as the staff here at Polfit.  The therapists have become our "friends" (as Lila calls them), so much that she asks to play with them on Sundays as well :-)  They are so supportive of her, always giving her positive feedback all while making her work very hard.  I have no doubt that this program will change Lila's life, and that we will return for a second round of therapy within the next 6 months.

One more thing...she is sleeping so much better during the night, and is taking naps again (whew).  We now have happy, energized Lila back!  No more black eyes everyday!

Tuesday, September 27, 2011

Day 55

We are almost at the 2 month point following Lila's stem cell exciting!  The doctors say that we will see the largest improvements/changes between the 4 and 6 month time frame.  Her processing is still enhanced, as she answers questions and responds to requests much more quickly, and her speech is more clear as well.  Very exciting already :-)
Lila walking independently (with sticks)
More good news...Lila is catching up on sleep...yay!  She slept 12 hours last night, and took a little nap yesterday.  She is more alert today at therapy and enjoying herself!  See the video below:

Lastly, just got through with a long conversation involving Lila's lead therapist and the doctor here on staff.  They are so impressed with the changes they've seen, that I wanted to share.  She can now stand independently, with high top shoes and weights on her ankles, for 48 seconds.  This was the longest she did today, but has been wanting to balance on her own quite often.  She also walked 30 feet today, with her sticks and no assistance!  Anna was behind her in case she lost her balance, but she did not intervene more than once or twice.  She also said that Lila is correcting herself when she loses her balance, which she has never been able to do before!  She will either move her stick to catch herself (while off balance...WOW), or correct herself using her core muscles.  This is all quite amazing for her...we are so thankful for this program!!!

Monday, September 26, 2011

Day 52, 53, and 54

We had a great weekend with Grandma.  She arrived on Friday evening, and on Saturday morning we went to the Long Beach Aquarium to see "lots of fishes"...according to Nora.  The girls touched the sting rays and jelly fish, but decided to just watch the sharks :-)
Lila and Nora checking out the stingrays...hesitant to touch them

Our first look at the cool fish that make up the Long Beach Aquarium!
On Saturday night, after the aquarium, Matt and I went on a date with Dee Dee and Rod to Knotts Berry Farms.  Wow, this is something we would never do, but had a great time!  The roller coasters were such a great way to just let go and laugh a little bit.  It was also "Knotts SCARY Farms", a special event at this time of year, so there were creepy clowns walking all over the place scaring people left and right, including Matt!  He was so afraid of getting spooked, that he would egg them on and make it worse.  Yes, we "jumped" a few times throughout our evening...thanks Matt :-)

Here we are, Monday morning, and Lila is beginning her last week of therapy.  She is doing amazingly well today!  The first session of the morning she was walking with her sticks, with little to no assistance.  We have learned that she has great balance when she takes little steps, which is what we focused on today.  It was when she turned her head to the side, or took too big of steps that she lost her balance.  She is doing so well!

The second part of therapy was the spider, where she jumps on the trampoline, runs on the treadmill, and does the stair stepper machine.  She did great today!  She was hooked up with the bungees that are thinner, meaning less resistance for her, meaning that she has to use her muscles a ton more to keep herself upright and in control.  Probably why she kept asking to jump, but once the time came, decided not to jump at all.  Lila was so tired after the first hour of the spider, as she had to work a lot harder today.  Love those Polish therapists!

The last part of her day is usually quite whiny and not very productive.  She fights with Bartek as to whether to do her exercises on the mat or on the table (the table is where we want her).  So, today I told her that someone else had to use the mat, and I hid it in one of the offices...terrible Mom, I know.  Nevertheless, she had so much fun on the table, and worked very hard at her exercises with no complaining at all :-)  See, takes some manipulation, but is well worth the little fibs :-)

Lila on the table doing leg exercises with resistance from the bungees and weights

Friday, September 23, 2011

Day 49, 50, 51...End of week three

Lila is totally exhausted.  She is still not sleeping well, and has been terribly whiny today at therapy.  Hopefully, we will rest this weekend and get back into it next week.

On another note, I got an email from a friend yesterday who was sharing a story about the support she has seen for stem cells in the states, and has not seen for stem cells in the states.  This is something that I don't talk about with everyone, because it involves politics and I have different beliefs than many.  So, as to not impose on other people's beliefs, I try not to be too open as to my feelings about the government, FDA, and pharmaceutical they are linked...who actually runs who....and how they impact the future of medicine in our Country (all from my perspective, of course :-).

Nevertheless, I am spilling the beans about my feelings, and this below story solidifies it all!!!  This friend of mine just came back from a stem cell treatment in China, and is very passionate about the changes she has seen in her daughter, and the benefits of stem cells.....

"just wanted to share with everyone something really really impt. i have a very close family which we are friends with, who i won't same names. recently they had a family reunion they went to and saw one of their brothers who happens to be a billionaire who owns many pharmaceutical companies. they were discussing ava's situation and stemcells in china. the brother said to the other, i am against stemcells in the u.s. and the one said, why? he answered by explaining that he would be losing money in his companies which are even out of the country and that he doesn't mind them being in china but not here!! can you believe it. someone discussing ava's situation saying this??!!! of course our friend didn't agree with his brother. one is christian and one is not."
I knew it all along!  I have always said that there are NO pharmaceuticals involved in true stem cell treatments, and that the pharma corporations would have to find a way to make drugs that are mandatory for the stem cell therapies before it is accepted in the US.  Why?  Because the pharmaceutical companies run our government and our world of medicine here in the States!  They are the largest group of lobbyists that keep our government running, so have more power than they deserve when dealing with the health of our Country. They are not concerned with health, just making money on our poor health!  UUGGHHH!  I could go on and on, but will spare you my frustrations!  They are the reason that we have to leave our own Country in order to get these advanced treatments for our children!

Tuesday, September 20, 2011

DAY 48.....Polish T.V. debut!

As warned by her therapists....Lila is VERY tired this week.  Today she woke up at 5 a.m. (2 hrs. earlier than normal, so that doesn't help).   However, she did much better than I had anticipated AND she made her Polish t.v. debut!  A camera man from a Polish t.v. station came to Polfit today to do a story on what a great impact Polfit is making in people's lives.  She was not very thrilled until Lucas (the cameraman) told her he would show her the pictures.  She then smiled, went about her workout on the treadmill and took a break to watch herself on camera.

She is completing her tasks today, just much slower and with less enthusiasm.

Monday, September 19, 2011

Days 45, 46, 47...3rd week of PT program

Lila is exhausted!  She is not sleeping well, and is being a real pill today for the therapists.  They say that the third week is always the toughest for the kids, but the fourth week she should get another burst of energy.  Hopefully she can get some good rest this afternoon and evening, and be right back in the swing of things tomorrow.

Lila is also getting a cold/cough, which is another typical reaction for her body when she does not get enough rest.  We will have high hopes for good sleep today, and a quick recovery from this cold and cough.

More to come tomorrow.....

Friday, September 16, 2011

DAY 44....End of week 2 of a GREAT program!

     Today, Lila walked 150 feet with her walking sticks!  Arthur and Bartek said she seemed more tired and needed a little more assistance on her walk today.  It was  a big week for her and she is definitely ready for a break this weekend!  Ralph told me to expect a rough week next week....most kids seem to bonk in week 3 and have a second wind in week 4.  We shall see what happens!

    I wanted to show you all pictures of each of Lila's 3 daily sessions of her new routine, so you have a better visual for what she is doing:

Lila working her core!
Having fun strengthening those legs!
Session 1:     90 minutes

         Lila begins her day with the therasuit.  Core and leg strengthening exercises.
After exercises, she has been walking with her sticks with the suit on.

 Session 2:      90 minutes

   The spider room.  Lila connected to several different bungee cords from all angles giving her control of her legs.  She bounces on the trampoline for 45 min. (strengthening many muscles in her entire body).  Then walks in all directions on the tread mill.  

                                                         Session 3:       90 minutes

                                               Sorry....My camera is full and I could not add photos.  Just picture Lila on a  mat massaging her legs with Bartek(watching Annie, singing "tomorrow") for 45 minutes.  And 45 minutes of more exercises with leg braces and weights on her ankles.  Today was a struggle to finish, but she made it and still gets a piece of gum!  She works hard and is a trooper!

Have a WONDERFUL weekend!

Thursday, September 15, 2011

Day 44....Another day, another 120 feet!

Day 44..... Lila began her day as usual, with the therasuit.  She enjoyed her exercises and then took her newly routined walk with her walking sticks.  This time the goal was to find the trampoline on the other side of the room.  Her walk was quicker getting to the other side.....however, she couldn't see the trampoline!  So, Arthur and Bartek asked if she wanted to keep looking for it.  Her answer was a very enthusiastic: "YEA!".  So, she basically ended up walking 120 feet! (the entire perimeter of the 40x20 room)

I spoke in greater depth with Ralph (the lead therapist) about Lila's potential and he told me about a boy (Justin) who has the same cerebral palsy diagnosis as Lila, and began treatments with polfit 7 years ago at age 5.  ( He had no balance and less strength and muscle control than Lila).

Please watch this video of his progression, begin the video at 7:30.  His name is Justin. ENJOY!

All of the stories we hear, families and kids we meet continue to give us great hope for Lila's "better quality of life quest!"

Wednesday, September 14, 2011

DAY 43.......Do not take the simple things for granted.

Day 43: Lila amazes me!

     Lila continues to have a great time, while I continue to be amazed and so proud of her.  Her days now consist of an hour and a half of core and leg strengthening exercises,  a 15 min. break, an hour and a half of the spider with trampoline and treadmill,  a 15 min. break, an hour and a half of leg massage and more leg strengthening exercises. The first session is while wearing the "therasuit".  The "therasuit" is basically designed to strengthen and re-train muscles to their proper function.
     Because Lila whines and asks for help every time we are in the room, we must limit our time in her therapy sessions.  Today was the first time I have just "sat back" and observed her for a good length of time.  Usually I will let her know I am there and encourage her along the way, but mostly be out of their range.  Today I was stealth,  I was a ninja.  I hid behind walls and stuffed animals.  While I was being super covert, Lila cranked out her exercises while smiling/laughing and  doing her leg raises and push ups.  The first session was almost to an end and her therapists decided to see how well Lila walks with her "sticks" (crutches).
      I remained stealth to see how Lila would handle her situation.  While hiding behind a wall I watched Bartek and Arthur ask Lila if she wanted to use her sticks.  At first she was apprehensive,  then took the challenge (They are great at motivating her).  They set a goal for her to walk across the entire room, which is about 40 feet.  This task took her about 5 minutes with minimal assistance and maximum encouragement.   In those 5 minutes, I realized just how hard this little 5 year old works to do such a rudimentary task.  A task most of us take for granted.  That walk took me 6 seconds to do.  It took Lila 5 minutes, two coaches giving verbal cues and encouragement and some serious perseverance.  When she made it to the other side of that room, she was so proud of herself.  She had been given a goal, she met that goal, she "high fived" and most importantly, she learned that she CAN do that all by herself!  I am so proud of her!

After the celebration and while Bartek and Arthur were removing the therasuit, I asked Ralph (One of Polfits senior therapists) if he thought it was a reasonable goal to have her walk independently with crutches.  He said "Most definitely! And then with one crutch and then by herself."  He said that they all see such potential and strength in her that with hard work "she will do just fine."

Have a great day....enjoy your walk! : )  


Tuesday, September 13, 2011

Day 42.....The fun continues!

DAY 42: She LOVES it! (Matt as "Guest Blogger" continues for the week).  Lila walked into Polfit today yelling "Good Morning!" giggling, smiling and high-fiving everyone as she walked in.   She absolutely LOVES it here!  I am so thankful that she is having so much fun.  We truly are blessed with her (and Nora) as our daughter(s).  She has taught us so much and we will all continue to learn and grow.  Thanks to you all, for your financial support in making this therapy happen!  I think it (along with the stem cell treatment) is really going to benefit her quality of life so much!

Have a GREAT day!

Monday, September 12, 2011

DAY 41....Lila wakes up excited to play with her new friends!!

GOOD MORNING!  Matt here!  Filling in as "Guest Blogger" for the week as Maria is back home working.

First off, we had a pretty nice weekend!  Lila and Nora met one of their cousins (Bonita 17 mos.) who lives in Pasadena.  We swam in Bonita's pool and Bonita was very happy to share her great toys with the girls!  Mor-Mor (Grandma) is here helping for the week, so she had some time to play and enjoy the girls as well!

Monday morning...Lila was happy and ready to go play with Bartek, Ana, Arthur and Ralph.  Lila has been very apprehensive about leaving the hotel and going to therapy.  Today was different!  She was happy and ready to go!  In fact, she was so excited that before we pulled into the parking lot, she was saying "massage my leg".  I couldn't figure out what she was saying at first, and then she said "Bartek, massage my leg" (Bartek is also the massage therapist). We laughed and I was happy that she is feeling more comfortable with her new routine.

      The therapists began the morning with the therasuit, which up until now, has been a sore subject.  She is a whining!  And, proceeded to lay on the table and do her strengthening exercises while talking and smiling! Lila played a short game of hide and seek with Bartek and Arthur and moved onto the Spider where she continued strength training by jumping and walking on the tread mill. (LOVES the treadmill).  She is AWESOME!  Thanks to Bartek, Ana, Arthur and Ralph for encouraging, supporting and making her feel comfortable!

Lila and Arthur preparing to jump using the "Spider"!

Saturday, September 10, 2011

Day 38-Lila's first week of therapy has come to an end

Lila did great this week!  The first couple of days were rough; yesterday was rough getting there in the morning, but great once we arrived.  Today, even better!  She told me the routine while we were driving there in the car, "I will work with Miss Anya, then play with Arthur, and get massage from Bartek.  Mommy you will work?".  So, she is finally getting into the routine...yay!

A large part of this therapy is using the therasuit.  This suit helps the kids to feel what is it like to have the proper alignment and use her muscles in the right way to walk with more structure and balance.  That being said, she was afraid of the suit all week, until today.  She did a great job this morning and let them put the suit on her while she waited patiently...with no crying!  Another hurdle jumped :-)

Check out how it works!

Not only does she have the suit on, but she has 1 1/2 lb. weights on her ankles!  What a champ :-)

Anya, the head PT, can't believe Lila's strength.  She feels that Lila is pretty amazing for low tone, however she does not know how to use the strength that she has.  So, part of this program is teaching her how to use this strength for better balance, control, and coordination.

Day 39 and 40

We just wanted to thank all of those from home who have done such an amazing job of gifting the girls wonderful items for their long stay here in LA.  Danni Zavadil hand made a book for Lila called "Lila's Church Family", with photos of multiple people from church.  Lila and Nora look at it everyday and talk about all of the photos.  So much fun, and a way to stay connected even though we are gone for a bit :-)  We love and miss you all!!!!

Our friends and family at the Goddard School held a coin war in each room, and raised a good sum of money for Lila!  Not only did they do that, but they filled these adorable backpacks for the girls with fun coloring books, crayons, toothbrushes, sippies, etc.  These have been such a hit!  We bring Lila's backpack to her therapies everyday with all of her snacks for the morning :-)  Thank you to all of the Goddard staff!!!!  We love you!

Thursday, September 8, 2011

Day 37- Lila has waited her whole life for this feeling :-)

One of Lila's favorite things is jumping, nevertheless when your body is as uncontrolled as hers, it is difficult to jump for a period of time.  Not today!  Lila was hooked up to the spider and having a blast!

(so sorry again about this being'd think I would have learned after yesterday :-)  Maybe tomorrow...)

Lila ends the day with a massage and a few strengthening exercises on the floor...

Wednesday, September 7, 2011

Day 36

Lila's second day of physical therapy went much smoother than the first.  I had to be out of the room much of the time, but could sneak in at the end and take a photo or two.

She actually did things today that I never thought she could or would do!  Even after three hours of therapy, she did another hour of strengthening exercises.  Wow!

So, what I learned from today is that sometimes as parents, we put expectations on our children that they are fully capable of exceeding.  We may not think that they can, but they do so in each and every instance.  Just when I thought that Lila was not capable of handling more than 3 hours of therapy at a time, she went for 4 hours today.  Moral of the story is...stop influencing our children with our own fears, and let them be all they can be!!!

Look at this!
I am so sorry that it is sideways.  It is late, and I cannot seem to figure out how to rotate the video prior to importing it into the blog.  Sorry...hope you all don't have sore necks after this one :-)

Tuesday, September 6, 2011

Day 35...first day of intensive physical therapy

For those of you who donated Marriott points to our stay in LA...we cannot thank you enough!!!!  We have a very comfortable space to live in for the next 30 days, with breakfast and happy hour snacks for Matt, and a full kitchen for the rest of our meals.  Amazing!  Thank you from the bottom of our hearts!

As for the first day of therapy...uuugghhh!  Lila cried nearly the entire time, except for when she wasn't doing therapy.  HHmmmm, not exactly a good first day.  A little about CP...people with cerebral palsy are only comfortable in their own spaces, places, and routines.  When breaking those routines, living spaces, and therapists, their worlds are rocked.  It will most likely take the first week before she is comfortable enough to get something out of this program.  Thank goodness it is four weeks long :-)  So, keep praying for a better day tomorrow.

Lila on the Spider saying, "I'm all done"

Lila on the Spider still saying, "I'm all done"
The one great thing is that the therapists are so excited because Lila already has absolutely amazing skills and strength.  They saw her doing things that they would have never thought she could do (i.e. stand up against the wall using one had to get up and one hand to balance on the wall).  There are three different therapists that she will be working with each day, and each of them said that they were excited for her, and the potential that she has :-)

Monday, September 5, 2011

Day 31, 32, 33, and 34 :-)

There is much to tell...

Matt came to LA on Friday (hung out with Deeds and Rod) with a car load of stuff for the month, and the girls and I arrived Saturday morning via plane.  Exhausted girls = nap time.  Lila was afraid to sleep in the new room, so we had to have a calm talk to help her understand that this is where she will be for a while.  Now that we are three days in (and five conversations in), she is finally not afraid any longer (just as of this evening).  So, sleep hasn't gone well these first three days, but hopefully will get better.

Matt was kind enough to give me a little free time with our friend Dee Dee (who lives 15 minutes from where we are staying) on Sunday morning.  We went hunting for sea glass on the beach, which was so therapeutic, relaxing, and exciting.
Dee Dee excited about all of the sea glass we were finding!
What a great morning it was, and we ended up with some amazing pieces!  Dee Dee actually made me a necklace out of an olive piece of glass I had found on our search :-)  Check it out, and all of her new pieces!  They are truly amazing, and hand picked :-)

Dee Dee hung out with all of us at the beach this morning, and was playing around with her camera.  She is getting more serious about photography and wanted to do come practicing on the girls.  Check out the photos:
Nora was resting, as we had a cold front come to the beach and visit us
After the beach, we went back to Dee Dee's to clean up and have a little lunch.  Well, after I got the girls cleaned up, Matt had given Nora some cheese to eat.  She was walking around with it and handed Lila a piece.  Most of you may not know, but Lila is SEVERELY allergic to dairy...and I mean severe!  So, we decide to skip lunch and just get back to the hotel, as she began rubbing her eyes and nose with vigor.  By the time we arrived, Lila's eyes were so swollen, that she could barely see, there was a rash that had begun on her chest, moved up to her shoulder, then neck, and up to her chin.  I was expecting her to throw up, but her breathing was not impacted, which is usually the first sign of throw up for her.
May be hard to see, but her eyes were a mess, and her rash was spreading on her upper chest area
Nevertheless, I got her in the bath, and she instantly stuck her face in the water...her eyes were hurting so badly.  I gave her a homeopathic remedy for allergic reactions, and after about 10 minutes, the rash had subsided, and she was feeling a bit better.  Toast is Lila's comfort food, so she had a piece or two, and then laid down for a nap, and her demeanor was great after sleeping a bit.  Here eyes are still very swollen, and maybe a bit bruised from 30 minutes of rubbing, but she is on the up-and-up.  UUGGHHH!  What else could happen with this little bugger?

Tomorrow we meet her new therapists and begin the program at Polfit.  Matt and I are so excited, as I know are most of you.  She has been making progress since the treatment, and we can't wait to see even more!  Five days a week, three hours a day, for four weeks...can't go wrong :-)
More details to come about the program....

Thursday, September 1, 2011

Day 30

Lila and I had some time to spend together this morning while Nora was napping.  She decided that she wanted to do a painting, so it is just that we did :-)
We also did about 20 minutes of physical therapy this morning, trying to strengthen her upper side leg muscles (very technical, I know).  We had lots of laughs, and it is fun to see Lila that way.  It doesn't seem to happen very often.

I was also working with puffy paints a week or two ago, and Lila and Nora wanted to do the same.  This is how we started our Sunday morning, while Dad sat and drank his coffee on the couch in the front room (this paints a picture that I think has never happened before :-).  Maybe we are getting over the "hump" :-)

Oh yes, and more good news...after all allocations have been set within the school district, there in fact is a morning developmental KG program.  We will be switching to her new school mid-October, and she will be going for the morning tomorrow to see how she does.  I think it will be fabulous for her to be in a morning program where she can actually go to school everyday...yay!  However, we will miss everyone at her current school, as we have had fun getting to know everyone over the past two years.  Maybe we will end up back in their care as Lila gets older :-)  Nevertheless, for now we are very excited to have her attend this morning program and really excel at her KG skills!

Lastly, Lila starts her intensive PT program next Tuesday.  We are truly looking forward to the changes she will see, and her confidence growing over the next month.  Keep an eye on the blog for changes :-)

Wednesday, August 31, 2011

Day 29

Lila had a great day today.  All morning we had physical therapy and speech therapy, came home for lunch, and headed to kindergarten this afternoon.  Now she is down for a nap, and has been asleep for almost two hours :-)...Ok, now it is evening, and she was a MESS after her nap!  Late naps are never good, but I had high hopes :-)
However, she drank a ton of water today, and ate more than she has in a long time :-)   Go stem cells, go!

As we got deeper into Lila's stem cell journey, Matt was struggling with what to pray for, and we have felt some criticism (some silent, some not) along the way  A friend of mine, of whom I've been connected through stem cell treatments, had the exact conversation with a member at her church, and wrote the note below.  I thought it was a nice note to share with you all.  It explains the way we, as parents of a child with a disability, will do everything we can to help them, and so much more.  All of which to be thankful for :-)

1 As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. 4 As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. 5 While I am in the world, I am the light of the world.”

6 After saying this, he spit on the ground, made some mud with the saliva, and put it on the man’s eyes. 7 “Go,” he told him, “wash in the Pool of Siloam” (this word means “Sent”). So the man went and washed, and came home seeing.

Tuesday, August 30, 2011

Day 27 & 28

I wrote this email to the parents at Lila and Nora's daycare, as they have had a "coin war" to raise money for Lila.  I assume that most of them do not know Lila's story, so I thought I would send out a thank you and a little info about Lila.  After writing it, I thought some of you might be interested in reading it as well, so I have attached it below.

For those of you that do not know Lila's background, I will give a little brief below (sorry if it's a bit long :-):
Lila is 5 1/2 years old and has cerebral palsy (CP).  Her CP is quite mild, but definitely needs attention.  In her first year of life, she looked like a typical child, however was not meeting milestones appropriately, and had failure to thrive and stunted growth.  Her growth issues were centered around her allergies and not getting the nutrition she needed early on in life, which we began to correct at 10 months.  We started her on a gluten free/dairy free diet at 10 months, and she gained 1 pound a month for 10 months straight!  We were hoping that in changing her diet, we would see some of these developmental delays straighten themselves out as well, which was not the case.

By the age of 3, Lila had 2 MRI's, 2 Eeg's, a nerve conduction test, testing for every syndrome out there, as well as genetic testing down to the chromosome micro-array.  Lila sailed through each and every test with normal results, which left us dumbfounded; she was a mystery to all doctors involved.  

At the age of 4 1/2, we had our yearly neurology appointment.  Traditionally, we leave these appointments with no new information, and make an appointment for the following year just to have someone checking on her from a neurologic base point.   Well, this past year I talked to the doctor about a stem cell treatment for Lila, with the possibility of using her sister's cord blood.  This prompted him to take a deeper look into Lila's file and see if he missed anything...sure enough, he did!  On her 2nd MRI, which was done when she was 2 1/2 years old, showed that her cerebellum was smaller than normal.  We spent the two years following that MRI searching and searching for the reasoning behind Lila's delays, and what we could do to help her.  UUgghhh.  This was bitter sweet because we were angry at the oversight, but so glad to have that information and know for a fact now that she does have cerebral palsy.  We were now able to move forward in helping her to grow and develop.
(thought the info below might be helpful before I go on...)

What is cerebral palsy?

Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three.[4][5] Resulting limits in movement and posture cause activity limitation and are often accompanied by disturbances of sensation, depth perception and other sight-based perceptual problems, communication ability, and sometimes even cognition.

What is the cerebellum?
The cerebellum (Latin for little brain) is a region of the brain that plays an important role in motor control. It is also involved in some cognitive functions such asattention and language, and probably in some emotional functions such as regulating fear and pleasure responses.  Its movement-related functions are the most clearly understood, however. The cerebellum does not initiate movement, but it contributes to coordination, precision, and accurate timing. It receives input from sensory systems and from other parts of the brain and spinal cord, and integrates these inputs to fine tune motor activity.  Because of this fine-tuning function,damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibriumposture, and motor learning.

Our next step was to become connected with many parents across the Country who have participated in intensive physical therapy programs, as well as stem cell treatments.  This allowed us to make an educated decision for Lila, now that we actually knew where her core issues were coming from.  

All of the above being said, we began fund-raising for Lila's treatments this past January and have been overwhelmed with the generosity and love out there for Lila.  By March 1st, we had raised $10,000, and by mid-April we had raised $20,000.  This allowed us to have a stem cell treatment for her at the beginning of August.  We are already seeing changes in her cognitive processing, as well as her balance and control.  We have continued fund raising throughout this year, which has now allowed us to give Lila the opportunity to attend an intensive physical therapy program in LA.  We leave this Friday and will be gone for the entire month of September (Matt and I will be back intermittently)!  As the year progresses, we will have a few more fundraisers in order to raise money for her next stem cell treatment...another $20,000 (within the next 12-18 months).  

We can not thank you all enough for sharing in the joy of Lila and everything you will have helped her to accomplish, just by getting your families involved :-)