Fun and Fundraisers!

This morning we wanted to show Bella a little more fun that usual so we hung her swing on the tree outside and let her experience the feeling of flying! She is used to going out wheneverpossible and experiencing everything the world has to offer. Unfortunately, her conditon makes that difficult now so her fun is now restricted to cool places with outlets for her equipment and comfortable resting places. Good thing for her...Mama and Papa are extremely creative and nothing limits us from getting her toys and tools that will make a once boring place into a jungle fun haven. We decided to hang the tree swing that FSMA.org sent us and see if Bella liked it. Needless to say...SHE WAS AMAZED AND FOUND IT EXTREMELY RELAXING! LOL

Her first reaction was shock. She wasn't sure what was going on. She kinda looked around trying to figure out what the heck her parents had her doing now. Then she finally got the hint that it was fun time and she immediately relaxed. It looked like she was so comfortable and relieved to be ouside that she sat back and lounged in her little swing as it swayed front to back in the morning breeze of Corona under the most shady and calming tree around :)

We also got word the we have a big package waiting to be picked up and Im thinking it the wagon that FSMA.org has sent us. If it is, then this afternoon we will load her and her suction machine up in it and take her for a little stroll around the neighborhood. Ill definetly bring Rocko and Tucker too because they love walks just as much as Bella does. I might have to Mickey-Mouse an umbrella to it if it doesnt already have one so that the sun doesn't bother her but that wont be to hard.

Tonight we are going to make it a family movie night because Bella can't get enough of Disney movies. Im thinking Happy Feet but we'll see. My girl had quite the workout yesterday because of her two physical therapy appointments so today I wanted to make it as relaxing yet eventful as possible. So far, I think Im succeeding :)

Her "Minnie-Button" is still a little infected so the doctor ordered us a new prescription that we will pick up today. Hopefully this works because from what I hear, treating a g-tube infection is so hard because its mostly always moist :( For now, I have gauze and tape around it keeping it dry, im disinfecting it with a 1/1 solution of hydrogen peroxide and water every time she's finished eating, and making sure she doesn't hit it when she moves her arms around.

Her red marks on her forehead are still there but since we have begun using Neosporin it looks like its been helping not only the healing but the mask from sticking to her skin and irritating it. Here;s how it looks now. Not as bad as before. Geesh, she's so beautiful!!

I keep praying she stays strong and does not get sick because we are but months away from the stem-cell therapy clinical trial!!! I pray that my Bella Mia is a candidate and benefits from the treatment! Even if the stem-cell therapy doesnt fix EVERYTHING, I will be happy if she just beats this disease, survives, and is able to independant enough to move around in a wheelchair. I mean, OF COURSE i would love for her to be completely cured and chances are she just might be but ill be happy with any improvement!

• Don't forget that the car wash hosted my Jessica Perez is this Sunday, August 23, 2009 at Mr.Petes in Downey

Date: Sunday August 23, 2009 from 9am-3pm

Location: Mr. Pete's 12050 Woodruff Ave, Downey

• And also the fundraiser at Astro Burgers hosted by Katie Andrianos is on Monday August 24, 2009

Start Date: Monday August 24, 2009 at 7 am

End Date: Tuesday August 25, 2009 at 3am

Location: ASTRO BURGERS 7475 Santa Monica Blvd, West Hollywood

If you cannot make it to any event and still want to donate email, text, or call me and I will gladly add your donation to the others.

Proceeds will go towards:

• Ordering Bella her Pulse Oximetery that the insurance did not provide
• Catching up on our car payments
• The FSMA.org website that helps fund clinical trials aiming to cure or find a treatment for SMA

Together, we can make a diffence and save lives!! PLEASE COME OUT AND SHOW YOUR SUPPORT!

forever fighting,

Bren