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 :-)