Please pray!!!
Anna' will be having minor surgery to replace her line. She is very worrying about everything has to be done before we can go home tomorrow, so she will be asking her dr. if she can stay till Monday. This loves her Dr. Al-Uzri and she will be on this weekend and next week.
The whole story was , she just got her stitches today to protect from loosing her line and service DR. kept telling me that this line does not need stitches it will hold very tight with out it. I kept telling them if you don't she loose it and who is right? ME!!! I am glad that we will have back our Dr. Al-Uzri :-)
It will be long day if they will try to get everything done tomorrow.
1. Her level is to low to do surgery, we hoping that her levels will go up over night. If that won't happen then she will need to get unit of .
2. Get her surgery done.
3. get her treatment done.
Friday, January 30, 2009
Thursday, January 29, 2009
Anna's pictures
We still in the hospital.
Anna's labs went down again, but this time her white blood cells went down too, so there was some infection involve in it. She is on strong antibiotics and we learn that she can't even get a little sick it get her back to her relapse.
The other night we were in ER we learn that if you have child with rare sickness don't go to local hospital, better if you can go straight to children one. What happen, that they didn't know her case so they pretty much dehydrated her. Also they wouldn't listen to me, she was need it blood pressure meds, they didn't give it to her. I asked them to call out Dr they didn't call until 5AM we got there at 7pm the night before. Then after they call they wanted to keep us till her labs are ready and give her meds and then send us to our DR at Dornbecher an Hour away, so i decided to just leave ER and go to our DR. I asked some friends to drive us there and we got admitted.
So here we are in our little room with our nurses waiting to go home. The residency Dr, keeps telling me that we will be here just one night, but we this will be our second night rrrrr.. Sometimes i don't understand why they can just ell us we don't know when you will be going. I got to talk to our regular DR and she told me that she will not let us go home until Friday for sure, maybe we will be home for the weekend. Also we got meet new DR Hematologist (Blood specialist) he will try to search and see if there anything we can do to prevent her from relapses. When Anna will be on FFP only once a week they want to do blood test for antibodies, if she does have them then it will be easy to treat her. I guess there is a regular Atypical HUS and there is also that cause by antibodies'. This is very interesting thing we learn today.
I tryed to post pictures, but it won't let me, so i will post them after we get home.
Have a great day!!
Anna's labs went down again, but this time her white blood cells went down too, so there was some infection involve in it. She is on strong antibiotics and we learn that she can't even get a little sick it get her back to her relapse.
The other night we were in ER we learn that if you have child with rare sickness don't go to local hospital, better if you can go straight to children one. What happen, that they didn't know her case so they pretty much dehydrated her. Also they wouldn't listen to me, she was need it blood pressure meds, they didn't give it to her. I asked them to call out Dr they didn't call until 5AM we got there at 7pm the night before. Then after they call they wanted to keep us till her labs are ready and give her meds and then send us to our DR at Dornbecher an Hour away, so i decided to just leave ER and go to our DR. I asked some friends to drive us there and we got admitted.
So here we are in our little room with our nurses waiting to go home. The residency Dr, keeps telling me that we will be here just one night, but we this will be our second night rrrrr.. Sometimes i don't understand why they can just ell us we don't know when you will be going. I got to talk to our regular DR and she told me that she will not let us go home until Friday for sure, maybe we will be home for the weekend. Also we got meet new DR Hematologist (Blood specialist) he will try to search and see if there anything we can do to prevent her from relapses. When Anna will be on FFP only once a week they want to do blood test for antibodies, if she does have them then it will be easy to treat her. I guess there is a regular Atypical HUS and there is also that cause by antibodies'. This is very interesting thing we learn today.
I tryed to post pictures, but it won't let me, so i will post them after we get home.
Have a great day!!
Tuesday, January 27, 2009
Anna is back in the hospital.
This time she just been sick we don't really know if that just a flu or something else. Because she was running fever last night she had to be check for line infections. We spend all night last night in Salem Hospital ER, they didn't know her case and instead calling drat Doernbecher, they did what they think she needs. They end up dehydrated her, so she is very dry and receiving fluids right now.
Tomorrow we will know if she can go home or she will have to receive antibiotics for infections.
Please keep her in prayers.
Thanks
Sveta
This time she just been sick we don't really know if that just a flu or something else. Because she was running fever last night she had to be check for line infections. We spend all night last night in Salem Hospital ER, they didn't know her case and instead calling drat Doernbecher, they did what they think she needs. They end up dehydrated her, so she is very dry and receiving fluids right now.
Tomorrow we will know if she can go home or she will have to receive antibiotics for infections.
Please keep her in prayers.
Thanks
Sveta
Anna is back in the hospital.
This time she just been sick we don't really know if that just a flu or something else. Because she was running fever last night she had to be check for line infections. We spend all night last night in Salem Hospital ER, they didn't know her case and instead calling drat Doernbecher, they did what they think she needs. They end up dehydrated her, so she is very dry and receiving fluids right now.
Tomorrow we will know if she can go home or she will have to receive antibiotics for infections.
Please keep her in prayers.
Thanks
Sveta
This time she just been sick we don't really know if that just a flu or something else. Because she was running fever last night she had to be check for line infections. We spend all night last night in Salem Hospital ER, they didn't know her case and instead calling drat Doernbecher, they did what they think she needs. They end up dehydrated her, so she is very dry and receiving fluids right now.
Tomorrow we will know if she can go home or she will have to receive antibiotics for infections.
Please keep her in prayers.
Thanks
Sveta
Monday, January 26, 2009
First i want to thanks everyone for your prayers, her labs are getting better very slowly.
In last few days Anna been very tired and not her self very low energy. Even right now we are home she is just very tired. We still going every other day this and next week, after that we can see if we can start 2 time a week. Our Dr. wants to be very carefully about how often Anna will do treatment, because we don't want her kidneys to fail. We are very grateful that she never need it dialysis and we hopping to keep this way.
Please continue to pray for her. If you can spread the word out to the other groups that would be great, we need more prayers for her healing.
Thanks
In last few days Anna been very tired and not her self very low energy. Even right now we are home she is just very tired. We still going every other day this and next week, after that we can see if we can start 2 time a week. Our Dr. wants to be very carefully about how often Anna will do treatment, because we don't want her kidneys to fail. We are very grateful that she never need it dialysis and we hopping to keep this way.
Please continue to pray for her. If you can spread the word out to the other groups that would be great, we need more prayers for her healing.
Thanks
Saturday, January 24, 2009
Favorite Foto Friday
Today is FFF--NEW.
I put just few pictures, as Anna does not like her look right now, her face is getting better as we lowering her steroids med.
Anna and Shayne
Anna and Caitlin
I love this one, Anna was getting her treatment and she decided her sister needs make over.
Louisa letting her sister to do anything......
Our dr. found out that research for Atypical HUS been put on the side, so we there will be nothing available for her
Here are some better news that she might be able to do gymnastics. Dr. talking about putting new line in it called "Fistula" where they connecting two veins and they become one big vain available for her treatments.
She will be poked every time she will needs the treatment, but Anna is very exited, not about the surgery but about getting back to her favorite sport. Please pray for the right decision.
I put just few pictures, as Anna does not like her look right now, her face is getting better as we lowering her steroids med.
Anna and Shayne
Anna and Caitlin
I love this one, Anna was getting her treatment and she decided her sister needs make over.
Louisa letting her sister to do anything......
Our dr. found out that research for Atypical HUS been put on the side, so we there will be nothing available for her
Here are some better news that she might be able to do gymnastics. Dr. talking about putting new line in it called "Fistula" where they connecting two veins and they become one big vain available for her treatments.
She will be poked every time she will needs the treatment, but Anna is very exited, not about the surgery but about getting back to her favorite sport. Please pray for the right decision.
Thursday, January 22, 2009
Anna is doing ok, we still going 3 times a week and will be going for another 2-3 weeks. They want her to be in full remission before we can move in to two times a week. Her labs are more confusing right now. We don't know at this point where they going and we want to see them getting better, but one numbers will get better another once will go in wrong direction. Here is example her platelets on Monday were 399 and today they are down to 254 this is big drop in 48 hours. We started to take her off steroids that should take week or so before she will be totally off. Right now she is very puffy, if you will check her blog there is her new picture. Today she had treatment with out using it them and she didn't got any reaction to it. She is coming down with something, we not really sure if it is cold or line infection. If she will start running fever she might will be in the hospital for a week.
I am not working at this point and i can't go back until Anna will get better. She is been only 1 or 2 days a week at school, other times she trying to attend school at the hospital during her treatments.
If anyone would like to come with us to her treatments, you are always welcome.
Here are some prayer request and our needs:
1. Anna's health stay fever free.
2. Get full remission
3. We need help with gas ( maybe gas cards)
4. Our dishwasher is giving up, the top shelf keeps falling (kids been braking dishes) we would like to replace it or fix it if anyone know how.
5. We have one house bill we have left to catch up ($475)
6. Anna doesn't like way she looks and everyone who see her keep asking if she is on steroids, she is hopping to loose it very soon.
Thanks for your prayers
Have a great day!!
I am not working at this point and i can't go back until Anna will get better. She is been only 1 or 2 days a week at school, other times she trying to attend school at the hospital during her treatments.
If anyone would like to come with us to her treatments, you are always welcome.
Here are some prayer request and our needs:
1. Anna's health stay fever free.
2. Get full remission
3. We need help with gas ( maybe gas cards)
4. Our dishwasher is giving up, the top shelf keeps falling (kids been braking dishes) we would like to replace it or fix it if anyone know how.
5. We have one house bill we have left to catch up ($475)
6. Anna doesn't like way she looks and everyone who see her keep asking if she is on steroids, she is hopping to loose it very soon.
Thanks for your prayers
Have a great day!!
Tuesday, January 20, 2009
Anna
Originally uploaded by lululchik
Our weekend went well. It was nice to have whole weekend off, we didn't had to go back on Saturday for treatment. We did some fun stuff with the kids, Anna got to go see her friends competing at gymnastics. It did kinda got her miss all those events, now she keeping asking if she can just go and play there at least. I told her we have to talk to the our doctor to see if there anything she can do.
Yesterday treatment went well, her labs still pretty much the same we hopping we can go to twice a week next week.
Today i got an e-mail from our Dr. saying that we can try to take her off the steroids, but if she will have problems with treatment, then we will have to put her back on it, Anna was very existed that at least we can try!!!! This means we can cut down on her blood pressured meds.
Saturday, January 17, 2009
We went to Doernbecher yesterday for her treatment, it went well, but she is getting a little irritated during her treatments, it seem better if no one talks or do anything with her during that time. They did got Internet running for her, so she can get some distraction going on, that seems helped a little.
Anna's blood levels went down a little, so she is not in danger of getting blood clod, but her kidney labs are still going up a little. We will go back on Monday and then they will decide when is her next treatment.
Anna's blood levels went down a little, so she is not in danger of getting blood clod, but her kidney labs are still going up a little. We will go back on Monday and then they will decide when is her next treatment.
Thursday, January 15, 2009
Yesterday we went to Doernbecher hospital with Anna for her treatment. The labs results are getting us more confusing of what her body needs. Her blood levels are going up, but with it also other stuff going up too. We used to watch her platelets until last relapse, then we learn that we have to look at her kidneys numbers first. If her kidneys numbers up, then she needs more treatments a week. There is always big BUT her platelets are getting too high and that can cause major complications like blood cloth.
She is having another treatment tomorrow and we hopping she won't need another one on Saturday and maybe do only twice next week.
She is having another treatment tomorrow and we hopping she won't need another one on Saturday and maybe do only twice next week.
Tuesday, January 13, 2009
Our trip on Monday went very well. Last week Anna had some problems with her labs, then our Dr. decided to switch some medications and that helped with some results that we got today. We found out that two different medications that she took at once are not working for her, so they did some adjustment. She still on steroids witch it makes her a little puffy, but she can't take other medication to get get her extra fluids out, her kidneys don't like it, so we have to just wait until she can stop taking steroids. It seems one thing leads in to the other and that is not an option for her body. Even for her fever, she can take only Tylenol and then go to ER, so they can make sure that nothing effecting.
Anna's labs are better, even her kidneys numbers went down. Our Dr. thinks that she is stable right now as long as we continue her treatment with out stopping. For this week is still the same plan every other day, then if her labs won't go in wrong direction, then we will be able to do twice a week for awhile and then to once a week.
Also today Anna finally went back to school since winter brake, she was exited to see her friends and her teachers.
Tomorrow we are going to the hospital for her treatment and also it is a BINGO day, i think she more excited to play then get her treatment done :-)
I don't know if you remember last December "Starlight foundation" had great night out for families with the special kids like Anna.
"Just received this notice, so I hope you will join me in forwarding this once-in-a lifetime opportunity which benefits Starlight. (Ends 1/15!)
Besides . . .the photo (and it is included in the YouTube video) is of our very own Carrissa and Starry!
Help us spread the word by sharing this video!
http://www.youtube.com/watch?v=K0umI-hSF4w
Starlight
Helping seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities.
Their mailing address is:
Starlight Childrenʼs Foundation
5757 Wilshire Boulevard, Suite M100
Los Angeles , CA 90036-5810
Our telephone:
310.479.1212
Visit us on the web:
http://www.starlight.org/
Copyright (C) 2009 Starlight - All rights reserved."
Anna's labs are better, even her kidneys numbers went down. Our Dr. thinks that she is stable right now as long as we continue her treatment with out stopping. For this week is still the same plan every other day, then if her labs won't go in wrong direction, then we will be able to do twice a week for awhile and then to once a week.
Also today Anna finally went back to school since winter brake, she was exited to see her friends and her teachers.
Tomorrow we are going to the hospital for her treatment and also it is a BINGO day, i think she more excited to play then get her treatment done :-)
I don't know if you remember last December "Starlight foundation" had great night out for families with the special kids like Anna.
"Just received this notice, so I hope you will join me in forwarding this once-in-a lifetime opportunity which benefits Starlight. (Ends 1/15!)
Besides . . .the photo (and it is included in the YouTube video) is of our very own Carrissa and Starry!
Help us spread the word by sharing this video!
http://www.youtube.com/watch?v=K0umI-hSF4w
Starlight
Helping seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities.
Their mailing address is:
Starlight Childrenʼs Foundation
5757 Wilshire Boulevard, Suite M100
Los Angeles , CA 90036-5810
Our telephone:
310.479.1212
Visit us on the web:
http://www.starlight.org/
Copyright (C) 2009 Starlight - All rights reserved."
Sunday, January 11, 2009
I just want to let you know our plan for this week.
This week Anna will be getting her treatments every other day and we hopping that she will be better so we can move on for 2 times a week.
We would like you to keep her in your prayers, so it will go very smooth with out any problem. On last treatment she was fell asleep that was not normal for her it did got everyone concern about it, she was very tired and not feeling well for the rest of that day.
Thanks
This week Anna will be getting her treatments every other day and we hopping that she will be better so we can move on for 2 times a week.
We would like you to keep her in your prayers, so it will go very smooth with out any problem. On last treatment she was fell asleep that was not normal for her it did got everyone concern about it, she was very tired and not feeling well for the rest of that day.
Thanks
We would like you to pray for little Abby
She was adopted from Guatemala. At three years old, she was diagnosed with a high-risk, aggressive form of Leukemia. Certain genetic complications have put her chance of surviving the treatment at about 20%.
I am praying for her and her family. Would you pray for them too?
You can find more about Abby here, on her family blog: http://www.riggsfamilyblog.com
She was adopted from Guatemala. At three years old, she was diagnosed with a high-risk, aggressive form of Leukemia. Certain genetic complications have put her chance of surviving the treatment at about 20%.
I am praying for her and her family. Would you pray for them too?
You can find more about Abby here, on her family blog: http://www.riggsfamilyblog.com
Friday, January 9, 2009
We went for Anna's treatment, that went with out any problems. Dr. didn't liked her lab results on her kidneys. Last Wednesday numbers went down, but today they were up again. Now we have to go back tomorrow and do every other day and hopping that her kidneys will get better. If they won't then we know we have to keep them at that level and not get any higher. But God can get those little numbers down and totally bring healing to her body.
Also today at the hospital the had team visitor, Anna was so excited to see them it was "Blazers" team
Also today at the hospital the had team visitor, Anna was so excited to see them it was "Blazers" team
FFF--COLD
This week favorite photo Friday is cold. We love snow, even here we don't get much of it, but when we get we just stay outside. Kids usually don't have school during that time, I know it sound crazy.
Please continue to pray for Anna, she will be getting treatment today.
If you would like to see more FFF photos go to http://kissthefrog4me.blogspot.com/
Have a great day and stay worm!!!
Please continue to pray for Anna, she will be getting treatment today.
If you would like to see more FFF photos go to http://kissthefrog4me.blogspot.com/
Have a great day and stay worm!!!
Thursday, January 8, 2009
On last visit at the hospital Anna's blood and kidney's level are getting better, so we didn't had to stay there. We got to meet our other old friends there. She also had very good conversation with her Dr.A. I am glad that we did it Anna is better now about getting her treatments done and having hope that this will eventually be over.
Anna attended school there and they had science project:
She visited with Carrissa and Jared
Tomorrow we going back for her treatment.
Anna attended school there and they had science project:
She visited with Carrissa and Jared
Tomorrow we going back for her treatment.
Wednesday, January 7, 2009
Today is Russian Christmas!!!
Before we will be on our way to the hospital, we want to wish you all a Russian "Merry Christmas"
Pleas keep Anna is your prayers. We hopping for better day for her:-)
Tuesday, January 6, 2009
We are back home and we keeping Anna from school for this week. Her blood levels went up and they are going where we want them to go, but her kidneys are going in wrong direction. We have to go back tomorrow and if her kidneys are not better, then she will have to stay there for at least 3 days.
On Sunday night Anna didn't want to go to bed, all she did was crying and asking me question about her condition and when this will all over. My answer was we trusting in God for her full healing, but she didn't wanted to hear that. Also Yesterday morning she didn't wanted to go for her treatment, all she wanted just stay in her bed and do nothing. I finally convince her that we want her to be well and if won't get her treatment it will get worse. I took her to Doernbecher early, so she can attend school there and play with friend that she made in her last week stay. She like that and she found out that her new friend will be going home today.
Her treatment went well i did talk to her Dr. explaining how Anna is been this days, that she is tired of all this going on. She told me that his relapse is worst one that she had so far and we need to make sure she won't relapse again. We every one it is BIG steps back and it is harder to get out of it. Anna is now on 5 different medication, when before she was only on one. We also will be trying get her genetic testing done, right now we waiting for insurance approval. I love out Dr she will have time tomorrow to sit down with Anna and me and just talk and answer Anna's Q. We looking for this conversation, usually when Dr. comes there always some extra people, so Anna didn't wanted to ask her anything. Anna is excited for this time, but we also hopping that she won't need to stay for another 3 days.
On Sunday night Anna didn't want to go to bed, all she did was crying and asking me question about her condition and when this will all over. My answer was we trusting in God for her full healing, but she didn't wanted to hear that. Also Yesterday morning she didn't wanted to go for her treatment, all she wanted just stay in her bed and do nothing. I finally convince her that we want her to be well and if won't get her treatment it will get worse. I took her to Doernbecher early, so she can attend school there and play with friend that she made in her last week stay. She like that and she found out that her new friend will be going home today.
Her treatment went well i did talk to her Dr. explaining how Anna is been this days, that she is tired of all this going on. She told me that his relapse is worst one that she had so far and we need to make sure she won't relapse again. We every one it is BIG steps back and it is harder to get out of it. Anna is now on 5 different medication, when before she was only on one. We also will be trying get her genetic testing done, right now we waiting for insurance approval. I love out Dr she will have time tomorrow to sit down with Anna and me and just talk and answer Anna's Q. We looking for this conversation, usually when Dr. comes there always some extra people, so Anna didn't wanted to ask her anything. Anna is excited for this time, but we also hopping that she won't need to stay for another 3 days.
Sunday, January 4, 2009
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