Sunday, July 17, 2011

Marriott Points anyone?????...and a gardening lesson from Lila

Lila, Nora, and I (and Matt for a bit too) are headed to LA for the month of September for Lila to participate in a four week intensive physical therapy program at Polfit.  Due to Lila's allergies, the length of our stay, and the amount of sleep Lila is going to need, we are needing to stay in accommodations that have a kitchen and separate bedroom.  What this means is that we are looking into a Residence Inn, or the like, and have found that it will cost about $4000 for the entire month.  Therefore, we are reaching out for help in order to assist us in our $4000 stay in LA for the month of September, by donating Marriott points for our stay.  If you, or anyone you know, has Marriott points that they would not mind parting with, I believe we can use the non-profit to help them write it off on this years taxes (the Residence Inn charges 35,000 points per night).  Please put the word out there, and if anyone has any questions about Lila or cerebral palsy, please drop me a note.

Secondly, Lila made Matt and I smile larger than life yesterday when she said, "Mommy, look at my plant".  I couldn't quite understand her, and for the past few years we have been trying to teach her that when we can't understand you we need more words.  So, she rephrased it and said, "look at my flower".  We got it!  Yay!  Then continued by using the sign for "plant", which she must have just learned at school :-)

The next morning she was doing it again, and we asked her what plants need to grow.  Here is what she said:

What a great morning it was!  At the end of the school year in June, her class was learning about plants and how they grow.'s all in there....she can retain information with that growing brain of hers.  Now, let's speed up her processing and she will surpass her peers in no-time :-)

Have a great week!

Wednesday, July 13, 2011

The Scoop

After much disappointment, we have bounced back and reconnected with the original doctors we were working with back in December of 2010.   You may remember that we had switched gears because this other group of doctors thought they might be able to help us use Nora's stem cells.  Well, here we are back at square one using donated umbilical cord stem cells that are heavily tested for any diseases, defects, etc. immediately when the baby is born.  The mother, donor, also goes through a battery of infectious disease testing to ensure that everyone is safe and healthy in the long run.  This hospital is a few minutes away from the one we had originally chosen, so we will be headed down to San Diego on August 1st, having her treatment in Tijuana on the 2nd, and returning to Reno on the 6th.

We are finally getting excited again at the possibilities for Lila and her future. Lately, I have been a bit discouraged because it is becoming more and more apparent of the things that Lila is not even trying to do anymore.  This tends to happen when we spend time with a group of typical kids that move at five times her pace.  One example that I have shared with a few people is that her friends will be playing outside with her in the sandbox, run inside to get a Popsicle, run back out, go into get some water, and run back out to play. All of this happens while Lila just sits there an waits/processes.  She thinks about how the patio is too hot for her to get out and crawl inside, and there is nothing to hold onto in order to get inside before the kids actually come back out, so she just waits.  This is a bummer, and I know is nothing we can control, other than giving her encouragement to do what her friends just did and maneuver accordingly to get there.  However, it still bums me out.

That all being said, we pray that the stem cells will give her the processing speed that she needs to move a little more quickly, and the excitement/motivation to be a bit more independent in her actions.  Please help us pray and allow for Lila to be safe during this treatment and beyond!

Monday, July 4, 2011

What a weekend!

Last week a friend was asking about Lila and her possible future treatments, so I was giving her the lowdown...continual disappointments, can not use Nora's stem cells due to Mexican government, spent between $3000 and $5000 of the money we raised to have the treatment fall through...blah, blah, blah...

She then asked what we were doing for fun, and I laughed, realizing that we are doing nothing for fun these days and we ought to get back to living.  So, on Thursday I had a client meeting at Squaw Valley (in Tahoe) and  decided to bring my running clothes with me in case the meeting ended early...AND IT DID!

One of my favorite hikes is at Squaw, Shirley Lake, so I decided to hit the trail-head.  Knowing I only had about 45 minutes, I was bound to enjoy it, but I didn't know what I was in for!  We had so much snow this past winter, that the run-off has provided for the most amazing waterfalls I have ever seen in the Sierras.  What a pleasant surprise :-)  I had the biggest smile on my face, and even though it was a short hike, I felt like I was hiking for hours.

It was sad to be out there alone, as I wanted to share it with Matt, so a couple of our friends offered to babysit on Sunday afternoon so that we could go on the hike together.  Wow, I forgot how nice it was to have some time to ourselves and get back to the basics.  What an awesome few days...hope you all enjoy the photos...

After having such a wonderful afternoon yesterday, we began the day today at Boca Reservoir swimming and building sand castles with the girls.  They had so much fun that Nora ended up falling asleep in the car on the way home!  This may not seem like a big deal to all of you out there, however this has NEVER happened before with our kids.  Breakthrough!!!!!  See, what a great weekend we have had...wwoooohhhooooo!
Oh, one more thing...we have officially scheduled Lila's treatment for August 2nd...another breakthrough :-)  We are now working with a team of doctors that we had originally begun with, who use only donated cord blood cells from blood banks in Mexico.  They match the gender and the blood type, which is exactly what we need for her to see positive results.  We are ecstatic at this news, and have full confidence in this team of doctors.  More detailed information to come in future posts :-)

Happy 4th to you all!

Friday, July 1, 2011

Brief update...

Originally we had planned to use donated umbilical cord stem cells for Lila's treatment, until we had heard of this doctor who was willing to help us use Nora's stem cells (Regenerative Medicine Institute).  Well, since that has officially fallen through, we are in talks with the doctors we had originally began working with last December (Nova Cells).  We are currently discussing costs, as their treatment is $8000 more than we originally planned for, however hope to have the treatment the first week of August.  We also still intend to head to LA for the intensive PT program for the month of September.

We'll keep you all posted, as we are still a bit in limbo....