Favorite Friday Foto

Here are some funny pictures of Anna ;-)

Sorry for not updating for awhile.
Anna is doing well, she receiving treatments once a week. We cancel her Iron IV drips it is been great to just go for one treatment.
Anna had her 11th birthday she got ticket to live "American Idol" concert. Boys went to visit their friends, so we had house full of girls. We did few sleepovers, one weekend she had her school friends overnight. I usually is not favor of that, because not knowing their families i didn't know what to expect. I was surprised how well everything went, they watch movies, play WII, dress ups. Second weekend she had her friends overnight, she had fun playing with them and i did take them to the movie. They all had fun!!!
Sorry i can't post pictures right now, out laptop got stolen few weeks ago from the hospital.
I will post pictures later today, as right now i am waiting for Anna to finish her treatment.
Thanks for all your prayers and support.

Look what i got in mail.

bggift
Originally uploaded by lululchik

My friend Lyd send me a present in the mail all the from Michigan.

HI everyone, it is been a wile since i updated.
Most exiting news is that her treatments are down to once a week. They stop Iron IV infusions and down to one medication for her blood pressure.
Anna is going to school 4 day's a week and every Wed. she gets her treatment. On last visit to the hospital someone stole our laptop ;-( We try ed to find it, but no luck. We will have to replace it, because Anna is using that for her school during her treatments.
Anna turn 11 yesterday, she had great day. It started with skipping her school, go to IHOP for breakfast. After everyone got home from school we went to see a movie and pizza. She got for her birthday tickets to "American Idol concert"
Last weekend we had first HOT weeklend and we got to go to our Oregon beach BRRRR it was cold there, but everyone had so much fun

Last few weeks on Facebook I met parents who has kids with Atypical HUS. It is been great to contact other parents who has kids with Atypical HUS kids. Some parents have little kids, some are older, some are lost their kidney function, some had small % left. This disease is so different and there no one alike. There is new medication available it called Soliris, it is been tried on three people. I got to talk to one mom on the phone and that was awesome to hear who understands what this disease does to our kids and be able to find more information for my self.
Anna is doing great still on her plasmapheresis, i really hopping that our doctor will let Anna skip her treatment on her Birthday. Did i told u her birthday is coming up this month and she will be 11yr. old. Someone came up with idea to send Anna pictures wishing her Birthday and we will put them on Anna's door, so she knows how many people praying for her healing. So if you would like to send it one please e-mail me at lululchik@gmail.com

Favorite Foto RUN

Anna can't run, so she pretending run with Misha.




Misha got to participate in Awesome 3000.
Here he made it to Finish.

We had great and busy weekend.
First we had family time with Starlight foundation. Every month they try to plan some fun stuff for family's with terminal ill kids. This time we went to Portland children theater,




We had Carrissa and her sister Shyanne to stay with us overnight.



Girls had a blast, this was Carrissa's first time to stay with us and she did great. Some of you know she was born with Spina Befida and had over 50 surgeries. On Sunday we took all the kids to my friends house and had Birthday Party for her twins they just turn 11.











Yesterday we had our trip to DCH for her treatments. It went well she had a little low blood pressure and her labs just still go down and up. It seems we can't get them just stay up. She met ballerinas there.

Anna is doing well.
She still get her treatments twice a week and they went up on her iron IV dose. They not even thinking to lower her plasma treatment even her blood levels staying up.
She did hurt her back last week, but it getting better. Anna's Birthday is coming up on May22, I would like to do something special for her. Anyone have any ideas?
I want to thank everyone who donates plasma. Anna gets 6-7 bags for each treatment, that is 6-7 people each time.
Thanks for your prayers and support

A few weeks ago we talked with our Dr. about weaning Anna off from Iron treatments. They went down to once a week, we got blood and iron results today. Her blood level is staying good, but her Iron went down. This got everyone surprised. So we are back to Iron treatments twice a week. Please continue to pray for her Iron level to go up and for Gods healing.
Thanks,
The Finley Family

Teens age 13-18: Enter the Rayne Tour Series' "Live Like a Rock Star" Sweepstakes today! Grand Prize: $850 night on the town, including dinner for 6 and limo service. First 200 entrants get a free copy of Always Watching.
Go here to enter.

ALWAYS WATCHING – Rayne Tour Series book #1

This daughter of a rock star has it all—until murder crashes her world.

During a concert, sixteen-year-old Shaley O'Connor stumbles upon the body of a friend backstage. Is Tom Hutchens' death connected to her?

Frightening messages arrive. Paparazzi stalk Shaley. Her private nightmare is displayed for all to see. Where is God at times like this?

As the clock runs out, Shaley must find Tom's killer—before he strikes again...

Seatbelt Suspense® for young adults.

Watch the trailer
Read prologue and first chapter
Join The Rayne Tour Series fan club.

We had great weekend, there was some ups and down. I think everyone have those times. Anna is been having setbacks, when she wanted to just do her favorite sport Gymnastics. So on Saturday she decided to go and play on trumpline it was OK until her back started to hurt. Wee know she just pull her muscle, but we still had to take her to ER to make sure her line still in place and it is.
She still goes to the hospital twice a week for her treatment. Last month when we did iron test her Iron went up from 4 to 9, and today it was 8 rrrrrr. It looks like we will have to get more iron in to her.

Hi, everyone we had busy week last week. Last Monday after Anna's treatment clamp on her like broke, so they had to replace her line. On Thursday she met with designers at NIKE and pick out some things for her shoes.



Did anyone ever see this speed limit?


On Friday she had her surgery, they decided to put totally different line and Anna really likes this one. It much softer and it doesn't hurt her.








Our Easter went pretty well we visited with my sister in law and kids had lots of fun.
Here are my worries:
Her labs are stable, but there is a little number that makes me worry and doctor thinks it is OK right now. As a mom i am worry about it, because with Anna it is in a matter of day's, everything can crash and she can gets admitted. We just take day at a time to see what will bring next visit.

I do give more updates on my Facebook, you can join prayer

group for Anna

I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published a new issue today, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

The magazine includes a lot of great content from bloggers you’ll appreciate, as well as great features, photos and other content. The magazine is owned and published by a family who have seven kids, three adopted and one who has Leukemia (www.riggsfamilyblog.com). The magazine gives away a bunch of ads to charities and ministries. Besides great articles on interesting people, there is a lot about family, adoption, personal finance, spiritual life, humor… all sorts of “life” topics.

Again, the subscription is FREE, and I know you’ll enjoy the magazine, so take a minute to check it out and sign up to get future issues. www.seriouslifemagazine.com

Well this we didn't even expected. Anna's line is not usable at this moment. One of her clamps on her line is broken, so it has to be replaced. We waiting for phone call from doctors to let us know when surgery will take place. Anna's next treatment is on Friday, so i think they will try to get it done on same day before the treatment. They did wanted to do on Thursday, but Anna has to go to NIKE and she doesn't want to miss it, so her doctors are ok with it.

Sorry for not blogging this week, i need it a little brake. Everyone here got overwhelm with things going on.
Anna has some good day's some bad and is not heath is her emotional side. She is very tired with everything she has to do and go to the hospital. On Friday she had totally emotional breakdown at the hospital. She was walking to school room and we saw one of her favorite doctors and she start crying saying to her that she just wants to sleep and not deal with it. Rest of the day was not her day, her line still didn't work properly and it took long time to finish her treatment. Then we didn't got her Iron or epogen because it was too late, so she should get that that on Monday.
Anna working on her tee shirt at school


Anna is tryed to eat lunch


They took her lunch away so many times, to get her line to work

Some good thing she had her concert and she did it great and she had to go to the carnival at he school. She had so much fun there and she won large Pizza for our dinner.
This coming week on Monday they will be sending genetic testing, we are very exited that this is finally will be happening. On Thursday Anna will be starting working with NIKE designer to make her shoe.

This is 6 kids who will be designing shoes for NIKE.