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 :-)

Sunday, August 28, 2011

Day 25 & 26...a bit long, sorry :-)

Lila is finally feeling better!  We had such a great morning today, visiting with everyone at church.  Lila was in great spirits, and wanted to show everyone how well she can balance :-)  She got lots of attention for doing so, and everyone could not believe how much she has changed in 3 1/2 weeks!!!  (Just went to take a video of her standing, and she is too tired...darn!).  I will post a video tomorrow :-)

Yesterday was a busy day full of fundraising events that lasted from 8 am until 6 p.m.  The first fund raiser was held by a very dear friend of mine, whom is also a designer in the Reno area, Laura.  She had a great idea to hold a "Designer's Bazaar", taking donations of all interior items, and selling them for 100% towards Lila's treatments.  It took some work, but came through fabulously.  We actually still have a ton of items left, so if anyone is looking for anything in particular, let me know (i.e. bar stools, benches, side chairs with upholstered seats and backs, fabric swatches and large bolts, Mayline drafting table, night stands, curtain panels, lamps, etc.). I will post photos within a few days of items we have still in our inventory.

Not only did Laura play a huge part in this, but so did Joe, the owner of Cabinet and Lighting where the event was held.  He was so generous in donating appliances to sell, sinks, lighting and accessories, as well as supplying us with a huge tent under which we held the sale!  That was amazingly kind of him to offer us his space to help out Lila!  This amazing event raised $1143 for Lila's next stem cell treatment!!!!  Thanks to you all for your help, kindness, and generosity!  (not to forget Katie, Angela, Ruby, Sharon, Kim, and so many more)

Our second fund raiser was through Family First Chiropractic (FFC).  These are the chiropractors we use for our family, of whom all play an integral roll in our lives.  They have made a huge impact as far as preventative medicine in our household, so much that the girls have never been on antibiotics (ok, Lila just once :-).  We are so thankful for them and their natural medicine practice, and don't know what we would do without them.

Ok, enough of my babbling...FFC holds a family picnic every year for all of their patients, and have a huge raffle throughout the day.  All of the raffle funds go towards different charities/organizations in the area.  This year they asked if Lila could be one of those charities.  WOW!  Of course she can, and was!  We had a fabulous day introducing Lila to everyone and teaching about stem cells and CP.  As far as funds raised, I am not sure, but it was a fun afternoon and we enjoyed every minute.  Thank you to FFC for supporting our family to the fullest!!!
The crew at FFC
We have lots of friends who attend the picnic, and Grayson is one of them (below).  All of the kids had their faces painted, played in the bounce houses and at the park, snagged a balloon that was made from Mr. Clown, and got to hug the Wolf Pack mascot!

Grayson had the best face painting of all!

Friday, August 26, 2011

Day 24

Not much to report today.  Lila is still not feeling 100%, but her energy level is getting better.  Her bumps are coming back in the same, watching them again.  She is still coughing as though she has been smoking for 40 years, but sleeping through the night :-)

Her response time is getting better again, with more sleep, and she is eating happily again.

We had a pleasant surprise visit from Lila's 1st physical therapist this evening, and we truly enjoyed chatting with her!  She has played such a major roll in our lives, and we are so thankful for her and her talents in working with our kids :-)

Lastly, we have a busy weekend ahead with two fundraisers tomorrow, possible lake time Sunday morning, and a birthday party Sunday evening.  I will finally get back to normal on Monday, and return any emails and calls that may have been overlooked.  Thank you all for your patience and have a great weekend :-)

Thursday, August 25, 2011

Day 22 & 23

Lila is still not feeling well, as she woke up again this morning throwing multiple fits and just generally exhausted.  Her immune system has always been compromised, due to her low muscle tone and CP.  When a typical child gets sick, it may take a couple of days to start seeing him/her getting well again.  For Lila, it usually means about 7 days of not feeling well at all, and then seeing a turn for the better.  So, we are waiting :-)  Although we finally got out of the house yesterday and went to physical therapy and speech therapy.  This just about knocked her out!  She had fun, because we hadn't moved in three days, but laid down for a LONG nap in the afternoon.

She is still not eating well, due to the head congestion and lack of front teeth.  She is also still not sleeping well because of her deep cough.  Once this cough settles down, we hope she will be able to sleep and get well.

We have bumped up physical therapy for the next two weeks (2-3 days a week), in order for her to get used to doing "work" everyday.  So, we went again this morning to see Libby, and Libby said something that was very kind.  She said now that she has been starting her days with Lila, she seems to have a good spirit all day long!  Prior to having Lila in the mornings, she would find herself struggling to get through the day with a positive energy for each child, until now.  What a nice thing to say!  Lila does touch everyone she comes in contact with, in such a special way :-)  We will miss Libby while we are gone to Lila's PT program in LA!

Tuesday, August 23, 2011

Day 21...3 weeks

Today Lila's world was turned upside-down.  Let me take a step back...on Saturday afternoon I was laying Lila down for a nap.  We were being silly, and I was tickling her in her bed.  She flung her body to one side, awful quickly, and banged her front tooth on the headboard of her bed.  Well, the headboard is much harder then her tooth and it pushed her tooth back pretty far.  There was a little bleeding, and then no sleeping :-(

So, over the past few days she has woken up to a swollen lip and a crabby disposition...hard to get good sleep with an aching tooth, not to mention a deep cough and chest cold.  So, we had made an appointment to see the dentist early this morning and assess the situation.  Based on the x-ray, the dentist though her tooth would be hanging by a thread when she saw her.  The headboard incident had pushed her tooth back, while the root shot forward, and it was a recipe for disaster.  Nevertheless, her tooth was still in place (not hanging by a thread) but was hurting her quite a bit.  The dentist gave us the option of pulling it or seeing if it begins to heal.  We had a few concerns, with our upcoming departure to LA.  If it got infected while we were away, how would we deal with that?  She would miss this necessary therapy, and take time to heal.  Also, if the stem cells are still finding their way, we certainly did not want them to go to fix her aching tooth.  Lastly, is she this sick because the tooth was already a bit infected?  No one can tell, so we thought it would be best to just take the tooth out.

Lila now has a toothless grin, and we hope those "big girl teeth" come in very soon :-)
Matt had to hold her down and tickle her (consequently, this is how she hurt her tooth in the first place) to get a photo

Lila being silly and not showing me her teeth :-)

The run down for my records...not sleeping well, not eating well, exhausted, and not attending school again...uuggghhh.

Monday, August 22, 2011

Day 20

Lila hasn't been feeling well the past couple of days, and today was much worse.  She has a very deep chest cough, and is extremely congested.  I kept her home from school today to get rest, and she did not sleep, but just rested.  Gosh, I hate when I know that she needs so much sleep and she doesn't get any!  On the other hand, she ate a ton today, and drank more water than I've seen her drink in a long time.  Hopefully that flushed out some of the toxins that are in her body from this virus she has.

The stem cells....right now the stem cells should be stimulating Lila's nervous system.   As they do so, their job is to elongate the axon of the damaged cells and help to lay down new neuro pathways.  Our hope is that the stimulation will help the cerebellum to correct itself and begin to show a more normal rate of growth.

Sunday, August 21, 2011

Days 18 and 19, and a post stem cell transformation of the blog

I hope you all enjoy the new look of the blog.  We thought it would be fun to have a post stem cell blog change, as Lila is going through so many changes right now...changes we can't even see :-)

This weekend has been busy.  Yesterday we had a garage sale and raised $620 for Lila ($300 from the sale, and $320 in generous donations from our neighbors)!  We are lucky to be surrounded by such support, and had a fun day while we were at it :-)  Lila enjoyed chatting with all of the new people, and Nora had fun bringing all of the toys back into the garage.  By 9 p.m. Matt and I were in bed...exhausted!  Great day!

Today we took the girls to Lake Tahoe to spend the morning on the beach.  We had a rough start, as the girls were early risers this morning, and almost turned around to come home when we hit Truckee (25 minutes away).  Nevertheless, Dad made the decision to move forward with our plans, thankfully because the girls really enjoyed the morning.  Lila wanted to climb the rocks at the beach and jump off...

Nora and Lila enjoyed digging in the sand, while Matt filled their hole with water.

 He then said, "I'm going to let them get dirty and throw sand until they bother someone other than us."  Not two minutes later Nora came right over to him and sat on top of him!  Hilarious!
Here are more photos from the day :-)
Mommy and her girls :-)
Lila and Nora heading for the water
Have a great week!

Friday, August 19, 2011

Day 17...A financial update

Well, we have finally gotten some numbers tightened up from everything we had gone through with the hopes of using Nora's cord blood, to the current doctors that we did use, and travel expenses.  So, here's the scoop.

To date we have raised a total of....drumroll please....$32,685.49!  WOW!  I can't even believe it!  The total cost of the procedure, labwork, travel expenses, etc. was $19,327.31.  That leaves Lila's current total at $13,358.18.

The physical therapy program in LA for the entire month of September, travel expenses, accommodations, etc. will be approximately $10,850.  There are a few costs that are fluid, so I have taken a guess, but this should be right in the ballpark.  The only thing that may change is that insurance may cover a small portion of the program ($7600 is the total for the program for 4 weeks), and we won't know until the PT program is over and they try to bill insurance.

The final remaining balance looks to be $2508.18.  That is wonderful!  We will continue to fund raise for her to have a second stem cell treatment within 12-18 months, so feel free to chime in if you have any good ideas :-)  Goddard School, and their families, have done an amazing job at supporting Lila, and I know there are some floating funds out there, we are having a garage sale at our house this weekend to raise money for Lila, and on the 27th we have two fundraisers happening in the community (a Designer's Bazaar, and the Family First Chiropractic summer picnic).  In the Fall, we will be selling some calendars directed towards sign language for babies, and holding a sign language class for anyone you know that might be interested.  Next year we will hold another dodgeball tournament, as this was such a fun event!!!  One last event that may happen towards the end of the year would be a karaoke contest at a local bar ($1 to sing and $5 to make someone stop singing :-).

Thanks for all of your support!!!  I hope you all have enjoyed the positive changes we are seeing as much as we have :-)

Thursday, August 18, 2011

Day 16

As the week progresses, Lila gets more and more tired.  She is not as quick on her toes as earlier in the week, and we are going to stay home from school tomorrow afternoon.  This afternoon at school she spent much of her time staring into space.  This is what she does when she is exhausted and can't even focus, so it's not even worth it for her to be there tomorrow.  She can catch up on her sleep over the weekend and start again on Monday.

However, this morning she woke up at 6:15 saying "Daddy, can you help me please.  have to go potty".  Matt went into her room and she did need to go potty!  Usually she just hangs out, laying in her bed, while she goes potty in her diaper. We have been asking her for at least the past year to just say in the morning that she has to go potty and we will come into her room and help her.  She is capable of getting out of her bed and coming into our room, this is just something that takes some processing, and too much time where she would most likely go in her diaper by the time she took all of the steps to get to our room.  So, even though it made for an early morning, we were very proud of her.

This morning Lila and I had some quiet time together where we cut, glued, and played with stickers in her Snip It book.  For the past two years, Lila has been using a special type of scissors used for fine motor development, and has not been able to work traditional scissors.  Well, today she was successfully using traditional scissors, and the adult size!  I was so proud of her, and she was proud of herself as well.  Here is her her picture she made...
Lila cut and pasted the majority of those pieces :-)
The last words on the mysterious bumps...after having many people, and doctors, tell me that they would use steroids or hydrocortizone to get rid of the bumps, I continued to remind myself that I am not looking for a way to get rid of them, as much as I am looking for an answer to where they could be coming from.  So I thank you all for your advice, however after a long discussion with our homeopath, he helped me to understand the root of the problem.  After traumatic experiences, medications, and foreign substances in your system, the body has to purge the toxins, emotions, stresses, etc.  The easiest way to do that is through the skin.  So, after the "boils" erupted, they caused a little itching and now just look like little red healing sores.  Skin irritations aren't bad, they are just a way for the body to do it's job, and do it well :-)

Wednesday, August 17, 2011

Day 15

Great morning, tired afternoon today :-)  Lila began her day with physical therapy and speech therapy.  Her physical therapist can't believe what she is seeing!  Lila balanced for a good minute this morning, all while processing directions (i.e., "Lila, you are putting too much weight on your heels, put more weight on your toes"). Libby could not believe what she was seeing.  Lila also was asked what she wanted to use to get to speech therapy with Meghan, the walker or shopping cart.  Normally she would look off in another direction while she is thinking about it and give you one word..."shopping cart".  Well, today she said, "UUmmmm, I think I'll cart".  Wwooohooo!  Another breakthrough!  Lastly, she was holding onto the walker and was transitioning over to the shopping cart, and instead of moving one hand and then the other, she just took both hands off of the walker and grabbed onto the shopping cart, just like all of us would do!  We never thought we would see such balance and confidence for her to be able to do such a little task.  What fun to watch :-)

The bumps?....Well, the ones on her arms have gotten better today, as the oozing liquid has dried up.  The ones on her neck have gotten more red, but are not raised any longer, and are now itching.  So, we will continue to observe them, and are now putting some calendula ointment on them to relieve the itching.

Tuesday, August 16, 2011

Day 14...two weeks!

Lila is doing quite well.  She was tired today, but overall is coming along.

The bumps on her neck and arm keep getting worse.  They are perfect raised circles, with a red surround and the ones on her arms are now oozing a clear fluid.
The doctors thought at first that it might be an allergic reaction to something, but can't seem to figure out what that is.  So, they just recommended using hydrocortizone to make them go away.  We still are concerned with where they are coming from and why they keep getting worse.  One of the doctors thought that they looked like a bug bite, and would probably get better.  So, we are working on figuring this out...any ideas?

bumps on arm yesterday

bumps on her arm this evening

Other than that, Lila and Nora were giving each other kisses tonight and it was something we needed to share with you all...have a great night!

Monday, August 15, 2011

Day 13

Lila is a champ!  Her energy level is definitely better than before her stem cell treatment.  Today she went to daycare this morning, I picked her up at 12:15, and she decided she wanted to go to her regular school also (her kindergarten class).  So, she was busy from 8:30 a.m. until 3:00p.m., and then napped until 5:15 p.m.  Great day for her!  It is amazing to me that she could make it through all of those activities with full attention!

At daycare, not this morning, but on Friday morning, the owner of the school (Denise) passed her room and saw her through the window (we LOVE Denise).  Denise was so happy to see her that she went directly into the classroom, got down to Lila's level, and said, "Lila, I am so happy to see you here this morning".  Lila very quickly and gently grabbed Denise's face and replied, "I'm glad to see you too".  This is a breakthrough for Lila!  Normally she would not process fast enough to get all of those words out, and just smile at you, or maybe say Hi.  How fun for everyone!

Also, at school today (in the afternoon) she worked with Cayla, her speech therapist.  We love Cayla!  Lila has been working with her for 2 years now and gets excited to see her every week.  So, I asked Cayla how Lila did, and she said she can't believe the difference already.  She was answering questions without hesitation, had a high energy level, and was attentive to all that Cayla asked of her.  YAY for Lila!  We are so excited for her to be able to communicate better with her teachers, therapists, friends, and family :-)

Lastly, when Lila came out of her treatment we noticed a couple of spots on the back of her neck and ear lobe, like little freckles.  They were just specs at the time, but are getting larger by the day.  Hopefully the doctors will have some answers for us on this...just waiting.

Sunday, August 14, 2011

Day 11 & 12

It was a late last night before I realized that I hadn't posted, so I thought I would couple it with today's posting :-)

Nothing new really.  She does seem to have more energy over the past few days.  Didn't nap yesterday, which led her back to her bad behaviors of taking out her tired/frustration out on her sister.  Once I saw the nap come and go, as she laid in her bed chatting, I knew we were in for a long afternoon.  However, she went to bed at 7:15 without a peep!  Gotta love that.

The rash that was on her neck went away about a week after her treatment, and didn't bother her at all.

There is one thing we forgot to mention about our stay in San Diego.....
A friend of mine grew up in San Diego and her parents still live there.  Her Mom was kind enough to let us borrow some key items and not have to travel with them (i.e. a step stool, sand toys, kids books and dvd's, etc.).  Well, who knew that the step stool would change Lila's life!  We have step stools at home, but they have two steps on them.  This one was just a single step, and was perfect for Lila to get on and off the potty with total independence.  What did we do right when we got home?  Well, we now have a single step stool in each bathroom, along with grab bars on the walls, allowing her to gain a sense of independence.  We knew this was our next step, but we didn't know how soon we needed to get these items, until the trip to San Diego :-)  Thanks Barbara!!!!

That being said, she now gets on and off the potty with very little assistance, and is excited to teach her sister how to use the potty :-)

Friday, August 12, 2011

Day 10 - The facts

All we can do is document changes that we are seeing in Lila, right?  We do not know whether these changes are stem cell related, however we are excited to share them with you all!  So, below are a few changes we have seen over the past few days, and regardless of how they have happened, we are very excited to have seen these positive qualities come out in Lila :-)

1.  For the past 18 months, really most all of Nora's life, my frustration level has risen with Lila.  When Nora does something Lila doesn't like, she hits her, pushes her, screams and throws fits (Lila, that is).  This goes back to her processing not being fast enough to use her words with Nora.  That all being said, over the past two days she has been using her words with Nora, and letting me know why she is frustrated!  (i.e. Nora took my puzzle piece, Mommy...OR...Nora, give me back the stroller).  I can then redirect Nora and thank Lila for using her words!  Wow!  This has made a tremendous difference in our daily routine, and I know Lila now feels better that her words are reinforced with positive feedback.  Whew!  What a blessing!

2.  Lila always, and I mean ALWAYS, asks for help in any type of physical scenario.  Out of habit, she will ask for help, and then when I get to her she will say, "I'll do it myself".  Very frustrating for all involved :-)  Nevertheless, yesterday after dinner, her and Nora were outside going up and down the slide.  1. She began to ask for help once, but didn't finish her sentence, 2. she went down the slide by herself, which happens very rarely at our house, and 3. She went down the slide, stood up at the side of the slide, walked to the stairs, climbed up, and went down the slide again (all while "vertical"!).  Check out the video of this great achievement!

(Sorry, can't seem to get the video to work.  I will hopefully be able to post it this weekend, however have attached a photo below of the experience )

3. I was not at home this afternoon, so when I called Matt to tell him that I was on my way home, he had gotten very excited.  He couldn't wait to tell me that Lila balanced on her own for at least 20 seconds.  (Hi!!Matt, here!....She was TRULY balancing!  Up until now, her balancing has mostly consisted of standing up and which ever way she leans first....she would fall over in that direction.  This was different!  True balancing.  She stood up, swayed back and forth, knees bent, both of us looking at each other, mouths wide open, very excited for this new experience!  AWESOME!  I love you all for helping and making this happen for us!  I can't wait to see it all unfold!  Thank you all!)  Maria here exciting, huh?

4.  Lastly, Lila far exceeded our expectation that she will want to eat twice as much following her treatment...she ate 1 1/2 cans of her favorite vegetable soup, all while dipping a piece of toast in her bowl.  WOW!  She complained for a good hour that her belly hurt :-)  Just feeding those stem cells...go stem cells go!

Thursday, August 11, 2011

Day 9

Lila went to her horseback riding lesson this morning, and was exhausted afterwards.  We came home and I laid the girls down for naps, but Lila was already overtired.  I hate when that happens, because then she doesn't sleep at all.  Uugghhh.  So, I got her up after an hour of resting, gave her lunch, and then she was ornery!  Being terribly mean to her sister, not listening, and just generally acting tired, crabby, and needy.  So, she went back down for a nap and only slept for an hour.  Generally a tiring day for all.

Lila has not been as hungry today as in prior days, but we hope for a big dinner and early bedtime :-)

Matt and I get the pleasure of having dinner tonight with our wonderful friends, Terra and Gary.  They were the creative ones who jump started this blog for us :-)  Can't wait to share some quality time with them!!!!

Wednesday, August 10, 2011

Day 8

Lila used her words like a champion today, and made me so proud all day long!  We had minimal fits, which are due to the frustration she carries from not being able to process as fast as she would like in order to get her sentences out.

One example...we were in the car and she started using a loud, frustrated voice, saying "NECKLACE, NECKLACE, NECKLACE".  Like usual I said, in a very calm voice, "Lila, what about the necklace?".  She responded with, "I would like the bracelet from Sue, mommy."  Oh my goodness, was my first thought!  This all happened in a matter of a minute and a half, which used to last 20 minutes!  The "necklace"?  Well, that is her first thought when wanting this amazing bracelet, so that is always where she begins.  I knew where she was headed, but we need her to use the proper words.  This is only one example of about 5 great sentences today, with no fits :-)

Matt's cousin Sue lives in San Diego, and we had the pleasure of spending time with her and her boys while we were there last week.  Sue makes amazing hand made, semi-precious jewelry, and kindly made Lila a bracelet for her to remember San Diego, and the time she spent with her cousins :-)  Lila takes pride in wearing the bracelet every day!
Lila with her bracelet on!  She loves it so much...wears it every day!
On another note, Lila had physical therapy today, and maybe was just having a really good morning.  I say that because she listened very attentively (which is not usual because she typically wants to run the show!), balanced better than ever before, and really focused on each step she took.  Lila decided herself that she wanted to walk the entire 45 minutes, and did a great job with assistance from a baby stroller that her sister kept wanting to steal :-)

Lastly, she had enough energy to go to school following PT, and took a two hour nap when she got home.

What a great day!!!!

Tuesday, August 9, 2011

Day 7

Today is a strange day.  Lila was exhausted this morning, so she took a 2 1/2 hour nap.  She woke up at 12:30, at which point we ate a quick lunch and I took her to school for the afternoon.  When I picked her up at 3 p.m., she looked as though she could have been sleeping!  We came home, had a snack, and she is now down for nap #2.  I had read that the stem cell patient will be twice as tired, and twice as hungry for two to four weeks following the treatment, but the doctor said this wouldn't be the case....hhhmmmm.  Everyone is different, and I guess this is the case for Lila :-)
Lila also has a little rash on her lower right side at the base of her neck.  It doesn't bother her at all, but we are watching it :-)

Monday, August 8, 2011

6 days following the treatment... THE FACTS

I was given some good advice from a dear friend at church on Sunday, and that was to try to post everyday for the next 3-6 months in order to track the differences we are seeing.  He told me that you all would be interested, so I am sorry if this is too much for you :-)  Please read at your desired pace :-)

Today is 6 days from her treatment.  We arrived home two days ago, and Lila has slept a ton since.  I think part of her exhaustion came from the trip itself, and part from the procedure.  So, after a 4 1/2 hour nap on Saturday, I think we are on the upswing.

Here is the run down of what we are to expect now that the cells are making their way through Lila's body:

Lila received 8.2 million cells, made up of hematopoietic cells (cells mostly found in bone marrow) and stem cells.
Hematologic cells and stem cells have the same CD34 marker on them, so it is hard to determine which cells are actually stem cells.  Therefore, all of the cells are injected into the patient, while the 5-7% that are stem cells do their job, all of the rest turn into normal blood cells and function to improve the immune system.

With that 5-7%, we will see behavioral improvements within about 4 weeks, which is very exciting.  However, we will see the bulk of the changes within the 3-6 month time frame (physical changes, speech changes, cognitive changes, and the like).  Once we pass that period of time, we will continue to see growth and change for the first 12 to 18 months.  We can then build on those changes as best we can by doing intensive therapy programs, possible one on one tutoring sessions, and fun stuff like swimming, gymnastics, etc.  We actually are thinking of starting Lila with piano this fall, as she has a hard time with hand eye coordination.  We hope that this would help her to use her brain in a different way, strengthening the memory and coordination needed to do such an activity.

So this is post number one in my series, hope you all enjoy!

Sunday, August 7, 2011

Back from Lila's stem cell treatment

The big day has arrived!  
We spent this past week in San Diego for Lila's stem cell treatment.  We were picked up on Tuesday at 10:30 a.m. by the doctors and headed over the border.  The hospital was a private facility, where the doctors were ready for us the minute we arrived.  Within 10 minutes we were in the room, Lila was changed into hospital garb, and she was wheeled back into the surgery room.  The treatment only took 20-30 minutes and she was back in the room with us.  Lila had a hard time coming out of sedation, but after the crying stopped, her spirits were lifted and she was wired for the rest of the day.  Her body was so tired, but her mind was on full speed all day.  It took us 1 hour and 45 minutes to get back over the border and into LaJolla, while the entire time Lila was singing, laughing, and enjoying herself (Matt and I were about to fall asleep).
After the treatment...Matt trying to nap while Lila learns to tie his shoe :-)
The day was a success.  We spent the rest of the week in La Jolla, at the La Jolla Beach and Tennis Club, where a one bedroom suite was donated to us for the week.  What an amazing experience that was!  Everyone was so kind, and we were able to enjoy the beach for the week, without having to get in the car and drive somewhere every time we wanted to get to the water.
Lila playing in the sand outside of our room
The view from our patio
Matt and Lila enjoying breakfast on the patio
We were excited to have the chance to spend time with family and friends while we were in San Diego!!!
My cousin Lindsay!
Matt's cousins Sue and Kevin
Kevin, Chris, and Lila making funny faces
Barbara, Andrea's Mom, came to give us some books, dvd's, a step stool, coolers and so much more to help us on our stay :-)
By having the step stool, along with the handicap accessible bars on the bathroom walls, Lila was able to get on and off the potty herself the entire week!  What a milestone!  Looks like we will be getting a new step stool this week, along with bars on the walls of the bathrooms :-)

Thanks for all of your support...more details to come!