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!