What a Week!!!

Well everyone, she is down to 2mgs of steroid a day let's all pray for the best. She had a very exciting week...she started home/hospital school and guess who her teacher is...Mrs Hansen her 1st grade teacher. Natalia was about to burst on Tuesday waiting for her to arrive and then on Wednesday...and Thursday. She is excited to be doing school work again.

Words from Natalia..."Thank you everyone for checking on me. I am doing fine. I hope to have a fun day tomorrow."

I have explained the blog to her, that she has lots of people who check on her and want to know how she is doing. She thinks you all are cool to do that. This Tuesday she and Edgar (Sophia too if they can get her out the door) are heading to UCSF for clinic and chemo. Everyone is looking forward to Thanksgiving dinner at my Mom & Dad's house. Natalia wants to take something that involves broccoli...yes she loves veggies.

Then it is hold our breaths for December 9th and her next MRI...

Stories of Light...Light the Tower for the Central Valley Make A Wish Fondation...from now until December 4th The Central Valley Make A Wish partnered with PEAK Broadcasting & EYE-Q Cares are starting their annual fundraiser. The goal is to raise $80,000 to send kids with lifethreating illnesses on their wishes. The average cost of a wish is $5000. The money would help children up and down the Central Valley. We taped our story a few weeks ago and it is being aired on the radio. Edgar will be using his awesome speaking ability by going on channel 4 Central Valley Today on December 2nd. Come out to help celebrate the campaign Thursday, December 4th at 7pm...Palm Bluffs Tower @ 685 W Alluvial Ave Fresno, Ca 93711 (parking is available at Sebastian at the NE corner of Palm & Alluvial) Santa*Hot Chocolate*Carolers*Snacks*Carriage Rides We hope to see you all there, it is not only going to be a fantastic time but it is a cause that is extremely close to our hearts. Please click on the link on the right side of the blog to learn more about campaign and how to give.

Much love to you all,
Roni

Check Up Time

Edgar and Natalia headed up to San Francisco on Thursday for her check up with Nuerosurgery and regular clinic & chemo. The shunt is doing good and she is healing well from the surgery. Everything looks good. Thank the Lord! We can see it by looking at her but it's better when the doctors agree. Dr Banerjee wants Edgar and I to discuss putting in a permanent port. Many of you have asked us whether she has one and are surprised that she doesn't when she gets as much chemo and blood draws...well come to find out Dr Banerjee has not brought it up with us before because the doctors did not believe that Natalia would be doing as well as she is right now. With the grace of God and her new chemo Natalia is kicking her prognosis in the B-U-T-T.

Today we made it to Sunday school. Both girls are in new classes and they were glowing from the excitement of being back. We have almost made it several times over the last few weeks but Natalia stops us before going out the door because she hasn't felt up to it. The desire to go was there but her little body wouldn't let her make that step out the doorway. Today we not only made it to class but after her nap we made it over to her godmother's new home. Wow! Out twice in one day...of course she was wiped out when we got home but she managed to take her shower and stay up through the new Hannah Montana episode.

We also have begun to decrease the steriod dose. 1 mg every few days until we reach 2 mgs a day. We are currently down to 4mgs a day and I don't see any side effects but...so prayers from all that she does well this time with the decrease. We made it all the way to 0mgs for 3 days the last time before she hit the wall.

Love to you all,

Roni

The Next Big Adventure

Natalia has spent the past several weeks virtually chained to her favorite spot on the couch. She did not want to move from this spot and just watched the world go on around her. While her little body trapped her in place her mind was free to travel...and so she did. She quickly grew tired of watching cartoons so she searched for something new to watch...the Travel Channel. She could not only watch one of her very favorite shows (Anthony Bourdain...No Reservations) but she could venture off to different places. She spent the week before her shunt surgery talking of nothing but Hawaii so as we see more and more improvement we are making it our goal to get there for April...it will mark the 1 year anniversary of her diagnosis. She was originally given 6mos-1yr and we are going to kick that one in the teeth by celebrating life.

I ask any of you who has been to the islands for advice. Just click on the comment note below the blog and leave your thoughts. We'd love to hear from you...that doesn't just mean about Hawaii, if you just want to say hi that's great I read them all to the girls.

Improvements...to understand how far she has come you need to realize how limited she had become. She would go from the bed to the couch and no where else. She was frightened to move even the slightest bit. Every move would make her think she was going to fall. She tremors were getting bad again and there was no hope of getting her to recognize when she had to go peepee. But even during this dark time her mind has been at its sharpest. Her body would just not cooperate. She is practicing her standing without holding on...she is up to 25 seconds, she is doing leg and arm lifts for exercise. She starting to walk with a little more confidence, so instead of having to wrap our arms around her to get her to walk she will now just hold your arm while slowly moving. She is reaching for things and stretching while sitting. She is on the road back. What we see now is miles from where she was before the shunt.

Love to you all and thank you soooo veryyyy much for your prayers,

Roni