Favorite Foto and update

Anna is been doing well, Our doctor is back from vacation and prescribed her antibiotic to prevent any infections. Anna will have her treatment this Wednesday we praying that her labs will stay good, so we can continue go every-other week.
We had great weekend.
1. We had family reunion:
We went to Waterloo park to see everyone. Most of the families stayed at camp site whole last week. We just went for the day on Saturday and everyone had a blast. Kids didn't want to leave. We will try go overnight next year.
Here are some pictures:








2. On Sunday we had Starlight Foundation Family Art day.
They had California Pizza Kitchen provided dinner for everyone. There was 15 families. Kids had lots of fun and they won some prizes ;-)

Urgent prayer request:

Anna's cap from one of her lines came off and we don't know how long it is been gone. There is concerning that she might get blood infection in the next few days. There is nothing we can do on our side it just to pray that it won't happen.
Thanks

Just want to let everyone know and keep Anna in your prayers

Anna will be skipping her treatments this week for the first time since January and we going every other week. Last week her labs showed that that her HCR went down a little. Usually when it goes down they give her Epogen(to help her build up her blood cells), but they didn't. I am worry about what her labs will be this week (we will get them done here local so we don't have to drive to DCH) and our doctor is on vacation until end of this week. Also her line area is giving a problems and we have to change her dressing everyday.
Yesterday at our church Anna went to ask pastor Mike to pray for one of her friends and also received prayer for her healing. Some people came up and give her very strong WORD about her going out and pray for her friends at the hospital.
Also Anna is asking to pray for her two friends who is very sick, their names Lilly (she has cancer) and BriAnna she has CF
Thanks

We got a letter today, we officially going to our trip for Anna's Make a Wish in October. Can u guess where she is going? She is been waiting for it since January when we applied. We didn't know if her dr.A will let her go, because of limits. Our dr.A is more excited to sign all her papers and let her go have fun!!.
Anna is been doing well and staying healthy with treatments. Next week we will be going on every other week and see how she will do. Now that i am been thinking about our dr.A decision i am OK with it and we all praying that she won't relapse when they will stop her treatment. If her body does get relapse then research group will be starting taking kids for study and Anna will be receiving new medication. It is very promising, there are few people that already taking it and they doing great. We been following their updates and so far they didn't need plasma treatment or any hospital stay.

We been enjoying stay out of hospital and just have normal days of summer play. Other kids been doing well, but Misha sometimes still gets jealous on Anna getting more attention then him and he decided he wants to be sick too. We had long talk with him to help him understand, that hospital is not the play u want to be. We are trying to get some times with each kid, so that way they don't felt left out.

Pray for me.... Pray for others

We participate in "Pray for Me... Pray for Others" on the Riggs Family Blog. Check out their blog to add your prayer request. Join a community of friends who care about you, and hope you will care about them.

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.