hello!! well lately we have been getting my mom and sister camille worked up to be donors. we are hoping if all goes well that i could hava a transplant in the summer!!!! im in school again!!! and right now taking the csaps and waiting for spring break!!! also we are getting my make a wish ready for hopefyll disney world this summer!! but tommorrow is my birthday yeah!! and saturday is my dads birthday and for teh st, patties parade we r riding in the make a wish limmo!!!! also last weekend my tube got clogged and i had to take many laxatives!!!! gross!!!! my sisters and i celebrated my birthday on satuirday and went shopping to buffaloe exchange then we saw alice in wonderland!!!! it was great!!!! have a good week and happy st patricks day!!!!

hello!!!!! well right now we are just waiting and praying for my antibodies to come down. last time we heard, they csme back the same. i am back in school full time and it is very hard! mostly tiring and just draining!!! the other night when i hooked myself up on dialysis blood just flowed through, usually it is clear fluid but instead it was dark red blood!!! i was hyperventilating and had an anxiety attack. once we got a hold of the nurse at the hospital, wee figured out it was ok and we fixed teh problem!!! however it was extremely scary for a few minutes there!! this weekend hopefully my brother tyler will be coming home for pres day weekend!!! today i was homesick from school bc i have come down with a cold and my throat and nose are just going crazy!!!!! thanks for all teh support and prayers!!!!! we love and accept and appreciate everything and anything god has for us!!!

Waiting, waiting. . .

Yesterday, Karina, Frank and I went to Children's hosp. for our monthly "clinics". Karina had vials of blood drawn to check her "antibody count". We were told we would need to wait about a week or more before we could learn the results of that test. So we are on "hold" until we learn the results. Many, many wonderful friends united in a special fast and prayer day for Karina. When we walked into the hosp. , it felt like we weren't alone. I could feel all of you dear friends with us. It was almost like you were holding our hands with us. This is a remarkable experience for us to feel so much support from so many. We do have Good news! Karina's dietician, Rose, told us that Karina's diet is fabulous as all of her levels (magnesium, sodium albumine etc) are perfect. karina told me she thinks this might be another miracle - as she doesn't really monitor her diet that closely. (I think it is a miracle that she is blessed this way and doesn't have to worry constantly about everything she eats all the time~!)
So, thank you to all of you for your sweet tender hearts as you have prayed for karina's levels to come down - we will let you know as soon as we know. . . sincerely, n~

2010 Here we come

Karina asked if I (Nanette-her mom) would be willing to update her blog now. I realize that for you it is more appealing to read her own words about this ordeal, but . . . :)

Last month, more extensive tests were run to check her blood and organs in preparation for getting on the "transplant list". We were excited to get started and get "listed". However, an alarmingly high antibody level came through the tests. This level should be at a 10% in order to receive a transplant, Karina's was at 90%. As we were told this news on the phone, I began to whimper-cry quietly. The Transplant nurse said the staff at Children's Hospital are "perplexed" over this elevated level. They haven't seen something like this in pediatrics. We discussed this might have happened because of the 2 units of blood that Karina received the first night in the hospital when she was checked in. We realize this was necessary to save her life, but, what tough consequences for those 2 units. Or perhaps, her antibody levels were already high and might have caused her kidneys to shut down in the first place? No one really knows, except for God -- He knows what is going on.

This Sunday, January 17th - three congregations in our community here in our Littletown will be uniting in a fast and prayer to God for three things; that IF GOD IS WILLING, 1) Karina's antibody levels might come down or we can find a way to bring them down somehow,

2) Karina can be strengthened through this time emotionally and spiritually and physically, and 3) We can accept whatever God desires of Karina and our family at this critical point - whatever it might be.

If anyone would like to join us in special prayer for Karina this Sunday, we would welcome you. We know many of you are already praying daily for our darling girl and we can't express how much this means to us. We love you and thank you for helping to lift us right now.

Hello everyone!!! sorry its been so long since ive blogged! but dialysis is going well!! and to be quite honest im starting to really feel how gross it is having kidney failure, just always feeling weak and tired, but im doing better i think!!! last monday we went to the hospital and i have to give myself shots again 1x a week because my red blood cell count dropped a little bit! also i was evaluated for a transplant and met my surgeon and team. also we started disscussing optional donors and we talked about what the surgery entails and the recovery and all that. Also i am so grateful to the family who has been doing 12 days of christmas for me, a great something to look forward to each day! thanks so much!!! also Camille came home from her mission this week and it has been so fun to see her and feel her spirit around!!! Merry Christmas everyone!!

well today i went to the hospital for clinic, which is when we visit with my social worker, head neuphrologist, my nurse, my dietician and we get updated on my levels and medications. also i had my labs done again and found out i dont have to give myself anymore shots!!!!!! yeah!!!! also that we get to cut down on one of my medications also most of my levels are finally stabilizing to what they will be with me on dialysis and still with kidney failure. also next month we are finally gonna start talking about getting a transplant and donors and tests and things!!!! a good good day!!! yeah ! also for halloween i went to a surprise party and was superwoman then on saturday my sister and we dressed up in my grandmothers clothes and beautiful hats that she made!!! thanks everyone again for all that you do !!!!!! love love!

hello everyone! last week i started going to my bible class more regularly. my blood pressure went up a little bit but it shouldnt be a big problem unless it doesnt go down again. also me grandma and my sister and i are making hats for a hat contest. last saturday my friends from school surprised me and we went to dinner and went shopping!!! then we went to one of my church dances. then my mom brought all my dialysis equipment to my friends house and i hooked up there and my mom slept over there with me! hah! my friends were able to see me and understand what went on during my dialysis. it was so good to see all my friends again! i probably wont be blogging that often until more news from doctors get back and after i go to my clinic which is when i visit with my docs and they tell me whats going on with my body then i will update everyone again!