Kayelee's hospital stay

7-15-10

Another update... Well we didn't end up getting to go home. The surgery got pushed back until today because of an emergency surgery on a NICU baby. Her surgery to get the line out is scheduled at 1 today. During the surgery they are going to put an IV in and she will have to have one more dose of antibiotics before we go home after the line is out and then she can take the rest orally. So hopefully today after the surgery and antibiotics we can go home. Her and I were able to go home on pass last night and I was so excited to see my kids. Kyle kept asking me when I would leave the room where I was going. I think he was worried as to when I would have to leave again, so I ended up staying home and sleeping with he kids last night and Joe stayed with Kayelee. It was fun to stay home with my kids. We all had a slumber party in my room. Oh how I miss my kids, I really hope today is the day. Jenny and Aaron left yesterday; they were amazing and wonderful and helped so so much. The kids had so much fun being with them and they just took care of everything. Jessica took my kids in the afternoon after they had to leave until Joe got home from work and she sent them home with a really yummy dinner. Thanks Jess so much! Today the kids are with Jenna and then my sister in law Amanda is going to come hang out with them in the afternoon until the surgery is over and hopefully we are home. Thanks again everyone for all your help!!! I just wanted to share a story I came across in the Ensign it was actually from one of President Monson's talks from conference. The story was me I know Heavenly Father knew I would need it. I truly wish I could personally thank the father for sharing his experience it lifted me at a time when I really needed it so much. If you'd like you can read it below: Over the years I have heard and read testimonies too numerous to count, shared with me by individuals who testify of the reality of the Resurrection and who have received, in their hours of greatest need, the peace and comfort promised by the Savior.I will mention just part of one such account. Two weeks ago I received a touching letter from a father of seven who wrote about his family and, in particular, his son Jason, who had become ill when 11 years of age. Over the next few years, Jason’s illness recurred several times. This father told of Jason’s positive attitude and sunny disposition, despite his health challenges. Jason received the Aaronic Priesthood at age 12 and “always willingly magnified his responsibilities with excellence, whether he felt well or not.” He received his Eagle Scout Award when he was 14 years old.Last summer, not long after Jason’s 15th birthday, he was once again admitted to the hospital. On one of his visits to see Jason, his father found him with his eyes closed. Not knowing whether Jason was asleep or awake, he began talking softly to him. “Jason,” he said, “I know you have been through a lot in your short life and that your current condition is difficult. Even though you have a giant battle ahead, I don’t ever want you to lose your faith in Jesus Christ.” He said he was startled as Jason immediately opened his eyes and said, “Never!” in a clear, resolute voice. Jason then closed his eyes and said no more. His father wrote: “In this simple declaration, Jason expressed one of the most powerful, pure testimonies of Jesus Christ that I have ever heard. . . . As his declaration of ‘Never!’ became imprinted on my soul that day, my heart filled with joy that my Heavenly Father had blessed me to be the father of such a tremendous and noble boy. . . . [It] was the last time I heard him declare his testimony of Christ.”Although his family was expecting this to be just another routine hospitalization, Jason passed away less than two weeks later. An older brother and sister were serving missions at the time. Another brother, Kyle, had just received his mission call. In fact, the call had come earlier than expected, and on August 5, just a week before Jason’s passing, the family gathered in his hospital room so that Kyle’s mission call could be opened there and shared with the entire family.In his letter to me, this father included a photograph of Jason in his hospital bed, with his big brother Kyle standing beside the bed, holding his mission call. This caption was written beneath the photograph: “Called to serve their missions together—on both sides of the veil.”Jason’s brother and sister already serving missions sent beautiful, comforting letters home to be shared at Jason’s funeral. His sister, serving in the Argentina Buenos Aires West Mission, as part of her letter, wrote: “I know that Jesus Christ lives, and because He lives, all of us, including our beloved Jason, will live again too. . . . We can take comfort in the sure knowledge we have that we have been sealed together as an eternal family. . . . If we do our very best to obey and do better in this life, we will see [him again].” She continued: “[A] scripture that I have long loved now takes on new significance and importance at this time. . . . [From] Revelation chapter 21, verse 4: ‘And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.’ ”My beloved brothers and sisters, in our hour of deepest sorrow, we can receive profound peace from the words of the angel that first Easter morning: “He is not here: for he is risen.”17 I just want to add like Jason's Dad, my heart is filled with JOY that my Heavenly Father has blessed me to be the mother of such a tremendous and noble girl (I feel the same way about my other 4 children)... What a blessing it is to be a parent, one of the greatest gifts I have ever received. These children truly are NOBLE and GREAT. I too with Jason want to Echo my testimony NEVER!!!

7-14-10

Kayelee did round 7 of pheresis today. We had a bit of a scare today. Before they hooked her up today to the pheresis machine they were getting everything ready on her central line on the port they put a 3 way stop for easier access to the blood to test her calcium when they are doing pheresis, anyway some how the nurse forgot to shut it right and so Kayelee was bleeding everywhere I was on the opposite side of the bed so I didn't see the blood, the nurse noticed a pool of blood under Kayelee and instantly clamped it off but it had already bled a lot. I was pretty worried as she needs all the blood she can get right now and her hemoglobin was up today so I really didn't want that to mess with her labs. Because of the loss they tested her hemoglobin after the treatment and her hemoglobin did drop a bit. I think it will be ok just really frustrating its scary because when someone makes a mistake here it is a big deal but everyone makes mistakes. It was just a hard situation I think everything will be ok. We will see what her levels are in the morning. The culture grew again from yesterday so they said today was the last round; they are taking that central line out tomorrow. As soon as the line comes out we can go home and she can take the antibiotics orally. WE are just waiting to hear from the doctor when the surgeon can take the line out. Kayelee is so excited to get the line out and go home. I am so excited as well. Jenny and Aaron and their family came to help us out on Sunday. It has been so wonderful having them here they have been so much help. They watched the kids all day yesterday and today. I was planning on going home Monday on pass to be with my kids but some of them got sick so Jenny and Aaron were so good to stay with them and watch sick kids. I didn't go home because I really didn't want Kayelee to get sick so we could get out of this hospital as soon as possible. They really have been so much help and we love them so so much. Jenny brought Ellie yesterday and Aubree and Kambree today to the hospital and we have all just had a blast. It has been so much fun for Kayelee and all of our kids having cousins here. We love Jenny and Aaron so much and have been so grateful for their help I know it was a big sacrifice for them to drop work and everything to come help us. We love our family so so much. We really have had to draw from their strength in this situation and we have been strengthened because of the strength they have. I can't wait to go home tomorrow... I haven't seen my baby since Saturday and I just don't leave my kids like that very often and I am so EXCITED to see them, I miss them so much! I can't wait to see my hubby too I haven't seen him since Sunday either, I just can't wait. Here is just a thought... I have been thinking about the story in the Bible of the women with the blood issue. She was healed but it took tremendous faith. She acted, had she just stayed in her home and continued to pay doctor's she would have never been healed but because she knew the Lord could heal her with only one touch of his gown she exercised that faith and went out into the street to find him. I think we all have to do that as well we can have faith but we also have to act in order for things to happen. We, all of us, in everything we do have to be willing to go out into the street and find him. That isn't just for physical healing either I think it very much applies to spiritual healing as well. I love you guys and am sorry you have to hear from us so often. Hopefully it will be less soon:) Have a wonderful night!

7-10-10, 7-11-10

7/10/10
today we got to go home for a good part of the day it was so fun. We had a BBQ and the kids played in the water and swam and it was so so fun. Good memories. All she needed today was antibiotics so it was a low key day. WE like it like that!! This is a little graphic but a day or two ago Kayelee went to the bathroom and after she was done she looked at her urine and said "mom it looks like normal pee. They (as in the nurses) will be so excited when they see it". It was cute but sad that she was so excited about urine without blood in it. Her blood pressure has been a little high so they have put her on some medicine to lower it. When the kidneys don't work right it sometimes causes high blood pressure I also think the increase of fluids from pheresis has something to do with it as well. 7/11/10 Today she had round six of pheresis. She did great no reactions yahoo! Yesterday Elizabeth Bues and her husband stopped by to see us. It was so fun visiting with them. She is Lana Nielson's sister in law her hubby is Lana's brother. She was the stranger that came and visited us shortly after Kayelee was in the hospital the first time. Lana sent her with flowers and gifts from Basin City 2nd ward. She is not a stranger now:) It was so fun to see her again, A sweet little angel. Joe has had the kids all week I have been home here and there when they will let us go on pass but not much. Kapri and Kambree had a sleepover with us one night and then Kyle had one with us the next night but for the most part he has had the kids all week and worked Tuesday-Friday at home. He has been so amazing and wonderful and I am so grateful for him he really is the best daddy ever. I love him so much. Yesterday when I was leaving I was so sad to leave the kids again it was breaking my heart, I know why I am a stay at home mom because I can't leave my kids. I am sad to be away from them so much and can't wait till we are home again. Our favorite things to do at the hospital are ride the elevator, Kayelee loves playing in the play room, and we love visiting the 8th floor to see all the brand new babies. Kayelee is convinced we need a boy baby next time (I wonder why:) We took pennies down to the lobby and made wishes in the fountain. I bet you know what mine was. Once again the latest and greatest is... (Sorry for all the other fluff) they found another bug in her line, it may just be a contaminant but it may be a start of a new infection. If the line keeps giving them problems I think they will stop pheresis early and then take the line out and be done. At this point I would love to just finish and do it right and then go without a line and just see what happens. Her platelets are still low but better than they have been they were 27,000 today the lab calls everyday with critical values to let the doc.'s know, a nurse who hadn't had us came in and said her platelets are low and I said what were they, they were 25,000 which was better than the day before. I said oh that is good, it’s all relative. The rest of her labs are looking better the hemoglobin is still low but coming up and her kidney function is a lot better. She is covered in bruises but hopefully with the platelets getting a little better some of the bruising will go away. Well see what happens with the line... I'll let you know. 7-5-10, 7-7-10, 7-9-10

7/5/10
Kayelee didn't have a reaction to today's pheresis so she is feeling so much better. She does for sure have an infection in her line so they will continue to give the antibiotic for a week. It is a scary thing to get an infection in that line, it is very dangerous but not uncommon when you have a central line. I think she would have been admitted to the hospital just for the infection in the line. The antibiotics have to be administered intravenously. I read all about atypical HUS today, I have been avoiding it hoping it would just all go away and Kayelee would get better, but I realized today this is for real and I need to do what I can to learn a lot more about it. I thought there was only about 25 people in the U.S. that have it but it is around 300 so so rare though. Honestly lots of Doctor's have never even seen atypical HUS. There is such a limited amount of research done on it. There is some though. There is no known cure for atypical HUS, and it is a life threatening illness. They say if you can survive the first bought with it things usually look a lot better for you. Your kidneys are the organ HUS attacks and in many patients the kidneys eventually fail, not all though. If you can keep it managed and keep the kidneys well then you have a lot better chance of saving them. The main known treatment for atypical HUS is plasma pheresis or plasma exchange, but it doesn't always work for all patients it depends on what is causing the HUS. There is another drug that Kayelee's doctor's have not talked about that I found out about today it is not FDA approved for HUS treatment but they have been trying it just recently since 2009 (I think) for some HUS patients and it has helped especially in keeping the kidneys doing well. Atypical HUS is a large title for the illness its kind of like calling fever like symptoms a fever illness but there are really so many different causes for fevers so you can't just call it a fever it is tied to a more specific diagnoses. So there are many different causes for atypical HUS the most common one is factor H it is about 30% of all the atypical cases, 20% are ones like CH factor and some other ones and 50% are considered idiopathic there is no known cause probably some kind of gene mutation that happened a few days after conception, that is not considered genetic in terms that it was not passed down from a parent. We all have a certain amount of gene mutations in our body’s but usually it is only a few so none of them pronounce themselves but for some reason everything lined up in a row and the HUS was unleashed in Kayelee. So she probably had it from birth but a series of events caused it to present itself. The tests from Iowa will tell us if it is genetic or a gene mutation. Unless they don't find the cause and then her cause will just be unknown. 7/7/10Kayelee is doing really well she had round 4 of pheresis today and she has not had a bad allergic reaction since that first day. It was Kambree's birthday and Kambree and Kapri had a sleepover with us at the hospital it was so so fun!

7/9/10
round 5 was today.I am really trying to get this letter out sorry it has taken me all week, sorry especially to those who don't talk with me often and are wondering how things are going. Kayelee is doing well. Her labs are improving. Her platelets are still so low 18,000 today and she does have tons of bruises. Her hemoglobin was 9.3 today and her kidneys still have a ways to go but are doing way better. She has 4 more rounds of pheresis to go. Her line infection has turned out to be a real frustration. They cannot seem to kill it (the infection). Today the culture hadn't grown as of 15 hours after the blood draw but I haven't heard since then if it grew yet that will be the first negative culture if it doesn't grow. Because it has taken so long (to clear the infection) and they don't even know if they cleared it they are going to take out the central line after her last round of plasma pheresis. They think it has been counter productive. They think if it were not for her line infection she would not be here at the hospital again... so frustrating. How do you know though? They thought at the time that if they needed it a couple days or weeks down road then it would be there but by leaving it in they gave the HUS a way to rage because her body was fighting the blood infection. Central line infections are so scary you can die from them. Just a really scary situation I am so glad her body was doing such a good job fighting off the line infection. If the HUS gets bad again and they feel like pheresis helped enough then they will go ahead and put another line in at that time. So the latest and greatest is that we can't officially go home until pheresis is over and they take the line out so that she is infection free. Right now they have to dose her twice a day with antibiotics through the line (which has to be done in the hospital) to make sure the infection is controlled until pheresis is over and they can take the line out. They have been letting us leave on "pass" which has been so nice so between antibiotic doses and after pheresis on pheresis days we can go home for a few hours. Kayelee is sleeping right now holding her little pioneer doll Grandma Freeman gave her when she got sick. She is such a sweet little pioneer herself she is going over her rocky ridge at a very young age. This weekend my Mom's side of our family was getting together at Martin's cove for a family reunion. We were so sad to miss and not be able to take part in those great memories and be with our family. We love all of you and hope the family reunion goes great and we wish so badly we could be there. We were headed on a trip with all Joe's brother's next week and are sad to miss out on that with them as well, I am sure they will do just fine without us though:) We will miss the memories. Have a wonderful day!

7-4-10
Happy 4th of July. I love this country and am so very grateful I live in it. I am grateful for our founding fathers who suffered so much for good to establish this country; I truly believe they were inspired by God to do what they did. What a wonderful place to live. I hope you all have a wonderful 4th of July! I am sorry it has taken me so long to get this out. The last week and especially couple of days have been a whirlwind. Kayelee is sleeping right now so I thought I could take the time to send this out and let you all know what is going on. We did indeed get admitted to the hospital on Friday evening. Her numbers did drop on Friday platelets 13,000 and hemoglobin 5.9 when we came in Friday night her hemoglobin was 4 something, really low I could tell she was so tired and white. It really did feel like those last two days that the HUS was eating her alive. Friday she just laid on the couch and saw the kids playing outside and she said "I wish I wasn't sick" I knew when it was keeping her from playing that it was hitting her hard, she has to be really sick before she will stop and just rest. As sad as I am to be back here I am grateful for some help to get her better. She is a very sick little girl who shows amazing faith and does not complain the strength in this little girl ceases to amaze me. I know I may be biased because she is mine but I have to admit before this experience I never knew of the strength she carried with her. I have come to learn and understand over the last few months that she is so courageous and strong. I know some of her courage, faith and strength have come from the many many fasting and prayers that have been offered on her behalf. It has strengthened me as well. As this is sometimes so difficult to bear my shoulders do not feel heavy, I feel like the people of Alma who’s burden's were lightened, they were not taken away at that moment but lightened by the Lord when they were being mistreated by wicked King Noah's priest and his people. I feel the same way my burdens have been lightened. Some days are very difficult and hard but somehow I always seem to make it through with my testimony even stronger and I know it is because of added strength from Heaven. Here's kind of the update of events after we got here Friday... They gave her a transfusion Friday night in the middle of the night; I woke up to a happy and lively girl again with pink lips and a bubbly spirit like she usually is. She came over to where I was sleeping and I woke up and could immediately tell she was doing SO much better. Saturday they took us in for her first round of pheresis. Before they did that they drew her blood. Her labs were better because of the transfusion but her kidneys and platelets were also better not really being a direct impact from the transfusion but I was happy they were better. Before they started the pheresis they drew blood from the line for more labs and they think they may have found an infection in her line. If that is the case that would also be a big reason as to why the HUS is ragging along with the UTI she had last week which is now gone. After they grow the culture from the line they will know for sure. The doctor said it is odd that she doesn't have any infection like symptoms but it may just be in her line. So after the plasmapheresis they gave her vencomysin (I have no idea how to spell that word) it is a strong antibiotic, to blast any infection if there is one. If that doesn't work then they have take the line out and put a new one in. I am hoping the venco (short for vencomyicn) will work. During pheresis she had some small evidence of an allergic reaction and they gave her more Benadryl, but after the pheresis I noticed her face swelling and her lips swelling and she had another severe reaction to the pheresis. She broke out in chills and got a fever and was and still is pretty miserable. She is doing a bit better now last night was worse and I am anxious to see how she is doing when she wakes up. She will get another round of pheresis today and then tomorrow and then every other day for 6 more treatments. We will see what the infection in the line unfolds to. Doctor Hansen sat with Joe and I for an hour or so and explained a-typical HUS to us and what is happening inside Kayelee's body when it is ragging. I understand it so much better now. It is a very serious thing; she has a very serious illness. Not that I didn't think that before but I just understand it better. It will be nice to find out the exact one when the tests come back from Iowa, so we can better know how to treat it. He explained a-typical Hus diagnosis as a very broad diagnosis, what is going on in her body is what they define as HUS but what is causing it can be different things. That’s what the Iowa tests will tell us. Our bodies are amazing and you cannot deny the exisistence of a God when you understand a little more how everything has to be just about perfect for them to work right. We are all hanging in there. Our plans for the next three weeks changed quite a bit with everything that is going on. It was very difficult to leave my kids on Friday. I LOVE my summers with them I LOVE having them home. So it was tearing me apart to know I had to leave again. I want to be with ALL of them so bad. I love them so much. After we got some of the news that we would most likely be going back on Friday we gathered our little family around and said a prayer, I was grateful for the peace of being able to pray as a family and know the Lord is in charge and things will work out according to his plan. Chaelaine kept calling me all week seeing if I needed help, she was even willing to set aside some things she was going to be doing if I needed her on Thursday. Friday I told her I might if she got re-admitted. She offered to just keep the kids over night so Joe could come to the hospital with me. My kids were so excited. Chaelaine and Eric were so wonderful, they got pizza Friday night, took them to the Marsing parade, to the park to play, they played in the water and had a BBQ. I am so glad my kids had a fun time even though we couldn't be with them and our plans to go to Utah got changed. Thank you Chaelaine and Eric so much. Also one of the sweetest things... Chaelaine has been forwarding my e-mails on to one of her friends who has been interested in Kayelee's situation. Her friend told Chaelaine if we needed any help to let her know. When the kids were there at her house this friend asked Chaelaine if she could bring a freezer meal over to give to us. I have never met her; it just really touched my heart. If you are reading this THANK YOU so much. It really meant a lot to me. My friend read my e-mail about Kayelee not being able to eat much phosphorous. She called me the next day on her way to the grocery store asking me if I needed anything. Well when she came back from the store she brought some yummy treats that she found that were low phosphorous. Kayelee was so excited. It was so kind. Daniel and Kanessa have been doing a bunch of research on charities and support for kids with a-typical HUS. The website they found is really neat and I am excited to explore it more, and the information they found is awesome. Thanks Dan and Kanessa. Have a wonderful Sunday and 4th of July!

6-30-10

So we went in for labs this morning everything was worse except the hemoglobin and hematocrit which stayed the same Hemoglobin 6.2 and hematocrit(I don't know if that is how you spell it) was 18. Her platelets dropped to 20,000 again they were 50,000. Dr. Jenkins called us in today again he wanted to see her. He said he wants to give her till Friday to see what she will do since her hemoglobin didn't drop. She is right where she needs a blood transfusion but he would love to see her come out of this on her own, so he is giving her until Friday morning. Her kidneys are only functioning at about 25% right now so they are struggling. They put her on a low phosphorous diet and asked us to watch her potassium intake, phosphorous is in most milk products, chicken, peanut butter etc. and those are her favorite things, and potassium is in a lot of fruit and leafy greens. The kidneys have a hard time filtering these out if they are struggling and her phosphorous is high right now. I guess I will have to get creative at what I feed her.Her spirits are still good as always she is happy and playing, she doesn't want to miss out on anything even though she is not feeling the best. We have seen the change in her in the last couple of weeks though she is not functioning at her normal spunky Kayelee self. She has quite a few bruises and she is so pale and white. She gets pretty exhausted throughout each day; she will even say she is tired shortly after she wakes up. We walked up the stairs to the Doctor today and that took about all she had she just wanted to sit on the concrete her little body was just so exhausted so I went and scooped her up and carried her to the Doctor's office. She will often just say to me "I'm tired mommy" and when I ask her how she is doing she will usually say "good but tired" One day I told her, you look so pale and white and she said "that means I am like Snow White my skin is white like hers", at least she finds the good in this situation, she feels lucky she gets to look like Snow White. The red blood cells, if I understand it right, carry all the oxygen to all the extremities and keep things going kind of like the engine on a train, just keeps everything going, so when they are low it just really makes you tired. She usually throws up a few times each morning because her kidneys are struggling but usually by lunch she makes it through the rest of the day without throwing up. She is a sweet little girl is it so very tough watching her go through so much. My sweet friend Jenna came over and watched my other kids today so we could go to the Doc. Thanks Jenna so much!!! Bobbi watched them last week when I went and my cousin Chaelaine keeps calling me and asking me what she can do to help. So many of you have offered. I feel blessed to have had lots of sweet friends and family offer help. Thank you everyone for offering so much to help I so appreciate it and wish so badly I didn't need any help at all. I love just being in the comfort of my own home or going where we like to go with my 5 sweet little kiddos just doing what we like to do not worrying about all this other stuff:) in our perfect little world right? I am grateful my world is as perfect as it is. Thanks everyone for being there for us. I may need it if she ends up in the hospital on Friday. If anything is worse on fir day Dr. Jenkins will admit her to the hospital give her a blood transfusion and start her on plasma pheresis (9 treatments) she will be there at least 2 and a half weeks. I would appreciate it if you would keep her in your prayers (I know most of you already are) I really want to see her kick this on her own if she can. My heart is aching for her little body I just hope she can pull out of this and get all the way better so she can be strong enough to fight off the rest of the stuff when it comes. I am hoping and praying for good news Friday. Thanks again!! Love you all!

6-28-10

Today we took Kayelee in again for labs. She did indeed have a UTI they grew the culture and she has one, she has already been on antibiotics since last Wednesday night. Her hemoglobin was low 6.2 they usually transfuse at this level. Her Bun and creatinine were high (they are supposed to be low) BUN 49 and creat. 1.3 so her kidneys are not doing so well. But the good news the platelets were 49,000 almost double what they were Wednesday. So the Doc. is going to hold off on Plasma pheresis again and the blood transfusion and see if her body just needs to get rid of the UTI and then it will kick it on its own. We are hoping and praying for that. The first sign of recovery is that the platelets usually come up so they are hoping she is starting to kick it. We will go in again for labs on Wednesday and if she is worse or no change she will go to the hospital for a blood transfusion and another set of plasma pheresis treatments (9 rounds again I assume). That have nothing else they can do for her at that point so they will try the pheresis again if she does not improve. We are hoping and praying she is doing better on Wednesday and that she can kick this on her own. Love you all!

6-24-10

Well.. I thought I'd let you know how things are going with Kayelee since some things have been happening this last week. What a crazy week it has been. We took her in Monday for her Labs (it had been two weeks) her hemoglobin had dropped from 10 to 8 (she needs a blood transfusion at 6) and her platelets went from 83,000 to 30,000 and then on Wednesday after we did labs again they were 27,000. Her kidneys are not functioning as well either. She kind of took a nose dive. Monday was a very difficult day. We saw Dr. Jenkins (the pediatric nephrologists) Wednesday he wanted us to come in after her levels dipped so much, he found a urinary tract infection and he thinks that may have set her off so we have her on antibiotics now and he is hoping come Tuesday we will see some improvement in her levels. We will get her labs again on Tuesday. I think the hardest pill to swallow was that Dr. Jenkins said He is 99.9% sure it is a-typical HUS the very rare kind. He said if it were caused by bacteria you would have seen her get better and then it would have never come back. Because it came back with an infection that is very typical of the a-typical rare form of HUS. So they think she will most likely have this all her life unless it can be cured by a kidney or liver transplant (that depends on what kind it is). The tests from Iowa will tell us that and we are still waiting on those, they should all be back by August 10th. The out comes are not so favorable when it is this kind of HUS. My faith is firm and I believe odds are only odds and statistics are only statistics when Heavenly Father is in charge. I truly believe this is in Heavenly Father's hands and things will work out the way they are supposed to, and I realize my ways are not his ways either sometimes the outcomes are not always what we want but what is right. It is not easy to say that but I no it is true. The prayers said in Kayelee's behalf have been so numerous and we thank you all for that. We know he has his arms wrapped around her and he has not left her alone. I truly love my family so much. The hardest trials I have had in my life have come from seeing my children suffer. Can you imagine what Heavenly Father felt when he saw Christ suffer as he did? I have only glimpsed a small glimpse of what he must have felt seeing him die like that. But rejoice in knowing he was freeing all of us from death. Thank goodness he did what he did so we can all be together with our families someday. There was a very real reason for his suffering and I believe there is a reason we all suffer too at times. The Gospel of Jesus Christ is TRUE my testimony if firm in that. Temples are such beautiful sacred places where we can experience true peace amid the storm, my home is a place like that too and I love being home with my family. I am so grateful we have temples and that families can be together forever. I love that primary song. What an amazingly always happy ending if we hold up our end of the deal. Thanks for all your love, support, and prayers we are grateful for every single prayer that has been said on her behalf. I truly believe prayer and faith change things if it is the will of the Lord. With love,

6-7-10

I just figured I'd give everyone a little update. I took Kayelee to get labs again today. Her platelets were up and that was awesome 83,000 (they were 63,000 2 weeks ago and normal is 150,000)!!! A little bad news though her hemoglobin was down to 10 and it was 12 two weeks ago 12 is normal. Her hematocrit also dropped. Nothing significant but it just shows the breakdown of her red blood cells is still happening just at a slower rate. We just continue to pray all will go back to normal. I think next Monday will be 6 weeks since they sent the tests to Iowa so some of them should start to come back but it could take up to 3 months before they all come back. So we are anxiously awaiting those we hope they all come back negative. For now we are just getting labs done when needed and I flush her central line and change the dressing on it. I'll keep you posted... I wish I knew more. I hope you are all well. Thanks for your continued prayers and support!