Pray for me.... Pray for others

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I hope everyone had awesome 4th July!!!
We had wonderful time with our friends and following day trip to American Idol concert.
Anna is been doing well with weekly treatments and will be going to every other week starting July 15. Doctors also reduce her blood pressure medications ;-).
Our plan for now is to finish her treatments sometimes in the fall. Doctors hope that when we will stop she won't go in to relapse for awhile maybe year or two, even when last time they tried to stop it came back with in 3-4 weeks. If she will go in relapse, then our hope that research will be available and she be able to get new medication. If she relapses again with in 3-4 weeks, then we have to start all over with treatments and hopefully, that her kidney will stay healthy. With genetic testing we will wait until study is available.
Thanks for continue praying and supporting our family.
It is been a year since Anna is on treatments, hospital stays and weekly trips. We spend our anniversary in her hospital room last year.
Thanks
I also want to ask u to pray for Carrissa 8yr. she was born with Spina Befida She is been having blisters on her legs and doctors thinking it might be her organs are shutting down. It is hard for her mom as they trying to find doctor who can tell them what is going on with her.
Thanks

McLinkey Photo Blog Hop

THis is our favorite photo this week. Anna got tickets to American Idol Tour first concert. Just a ladies went to see it, we had a blast ;-)

HI everyone,
Thanks for stop by our blog.
My name is Sveta and i came from Russia and been here for, o my my it is been 16yr. I never went to school here to learn how to write in english, so if u see my mistakes, don't count them ;-)
I have a wonderful family my husband Harlan and my 4 wonderful kids Louisa, Enoch, Anna, Enoch. My side of the family they all still in Russia and probably won't come to stay here, because they like were they are.
Lots of time i write update about out daughter Anna and our life around her crazy schedule.
We hope u will stop by our blog again!!!
Have a wonderful summer day!!!!

Hi everyone.
We had been busy with summer.

In our town movie theaters playing free movies and i love taking kids there, even they already seen them, but they love it.



Anna is been doing very well with her treatments and she is a little upsad about not allowing her to swim. She is trying every time other kids in the pool bugging me about it, in hope i will let her go in "sorry girl, that won't work'. i can understand her it is not fair to her, but there is what we have to do.
Last wed. on 24th we had Starlight Family night out. Kids had so much fun decorating canvas, for one company. They will be making bags for Starlight foundation.






Today we had Special Olympics. Anna and Louisa got to sing National Anthem and did some other volunteering. My group did very well and i am very prod of them.

We had our trip to Portland yesterday, for Anna't treatments. It went very well, Anna's labs are staying up for last 2 week. They stopped her epogen(blood buster)and she will be off until her labs will start go down. It is so exiting to have less medications and i hope it would be stay that way, so she won't need it.
Our plans for now is her treatment once a week with no changes. Sometimes i want to ask our Dr. if we can go to every other week, but we just wait a little more before we go that direction. There is also new medication will be available very soon and we hopping to get Anna in to the study for it. It is very promising and Anna will have more normal life like any other kids.

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

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