1st Birthday

Some 1 year milestones:

She can say Ma Ma, Da Da, Uh Oh, Nu Nu (nurse), Mi Mi (binki)

She has 7 teeth

She is not walking but can take about 3-5 steps, she is really close

She loves her Mama and Daddy has now become cool too. She is his little buddy

Every night in Kyle's prayers he thanks Heavenly Father for a sweet baby sister who makes us smile and laugh. It is so sweet The kids really do love her so much and have so much fun watching her grow.

She is such a sweet little girl we love having her in our family!

Austin Family Staycation

Below are pictures of our Staycation, below the pictures is the explanation... you can tell I haven't been blogging much lately:)


Foam Puppets

Welcome home fiesta for Kayelee

Pinata at My cousin's Chaelanie's house. She did a welcome home party for Kayelee and we had a blast.

Bowling

Spa time with the girls

Breakfast at the Restaurant

Over memorial day we had an Austin family Staycation. I got the idea from the Family Fun magazine, there website is a great resource for fun activites and ideas of things to do, make, cook, create all with kids in mind http://www.familyfun.com/. I created this schedule and we did it like a small family reunion at our house with just our kids. It was so fun our kids loved it and it was just what we needed after our long stay in the hospital and being apart as a family. It was great just taking a whole weekend and focusing on the kids. I think we will do it every year. Above are some highlights of our weekend.

1st Annual Austin Family STAYCATION (stay at home vacation)
May 2010

Friday night:
- Daddy gets home begin the party
- Chicken nuggets and Pizza
- Sleepover, Sleeping bags, movies, and popcorn

Saturday:

- Happy Late Birthday Lizzie
- Open Brittlee’s presents Sing Happy Birthday

Breakfast:
The Red Restaurant aka Austin family kitchen: Mom and Dad are the cook and waiter
Menu—order what you want
Eggs
Toast
Hot Chocolate
Oatmeal
Pancakes
Waffles
Cereal

Cupcake decorating – decorate cupcakes for Britt’s birthday

Free Play
Mom reads stories

Lunch: Indian Fry Bread
Clean up

Spa hour for the girls/ wood making project Kyle and Dad… you guys get BrittJ

Cool off with popsicles and rest

Bowling

Dinner: Something goodJ Maybe out to eat?


Sunday:

Mom work on sharing time, Dad has meetings. Kids free time, focus on the Savior, read Friend, watch Jesus Movies or family videos.

--Everyone baths and ready for church. Clean up and help where needed

Church

Make a treat together

Play games—Hide and seek, Charades, Bingo, Hot potato, Mother May I, Uno attack,

Eat Popcorn and have egg sandwiches

Monday:

Breakfast: Menu (see first breakfast)

Show and Tell—Everyone gets their “favorite thing” and they get to share it with the family.

Craft—foam animals/puppet show

Lunch: sandwiches/smoothies

2:00 FIESTA—at Chaelaines, Piñata, BBQ, fun with cousins.


Come home, End of Austin Staycation. Put all Austin tinies in bed.

Great Teachers

These are Kambree and Kyle's teachers Kambree was in 1st grade this year and Kyle was in 2nd. They had great teachers, I am so grateful for great teachers who teach my kids.

What happened

Sorry it has taken me so long to update... Life has been a bit crazy.

Here is basically a run down of what happened with Kayelee in the hospital. It is way long so I don't expect you to read it I just want it for journaling purposes, I wrote out updates while we were in the hospital so everything is written in letter form.

5/17/10 “Thank You”

Thank you!!!

Our words truly can’t give justice to the depth of our gratitude, but we would like to thank you all so very much for the incredible support you have provided during this trying yet very spiritual experience.

Kayelee is doing well and is now home!!! We hope and pray it is for good, but we will put our trust in Heavenly Father’s will as we do all we can in our power to make it so.

Kayelee was in the hospital for close to five weeks; during this time she had over 20 blood transfusions, 9 Plasmapheresis (plasma exchange) treatments, 2 platelet transfusions, near kidney failure, pneumonia, fevers of 105, major constipation, surgery to install a central line catheter (which she will keep for at least a month), two main allergic reactions to the plasma from the pheresis treatments, a urinary tract infection, extreme stomach pain, vomiting on several occasions, fainting twice, blood in the urine (from the kidney failure), low oxygen, needing to rely on the fluids and nutrition through her IV for a lot of the time she was at the hospital, missing her one year old sister’s birthday and lots of shots!!!

NOT FUN!

However, through it all Kayelee has maintained an absolutely incredible attitude which we are/were so grateful for. We attribute a lot of this to the strength & determination Kayelee possesses, but we also attribute it to the many prayers, much fasting and amazing support you have all provided. We know without this support everything wouldn’t be nearly as good as it is right now.

There are so many things to be grateful for:

We are so very grateful for Deb’s brother (and Kayelee’s doctor) who dropped everything to take Kayelee to the hospital and make sure she was treated properly; his medical skill and knowledge was quite valuable as he understood the gravity of the situation and made sure she had an IV before she left his office in case there were any complications on their way to the hospital. He has kept in touch with the doctor’s monitoring her case and will continue to provide regular checkups.

We are thankful for Joe’s employers who have been incredible to work with. They allowed him to work from home on multiple occasions including the entire first week, and they allowed him to be late to work and leave early to pick up and drop off kids. They told him to drop everything at any time if he needed to, “work will be there when you get back, but family needs to come first.”

We can’t express enough appreciation for those that provided extended stay visits: Joe’s mom, Deb’s parents, Joe’s dad, Paula, Amanda, Daryl, McCall, Pam and Amy; what wonderful help they all provided. It’s difficult to imagine how much harder this would have been without them, they did SO much!

We are very thankful for the MANY home and hospital visits by lots of family, friends, and complete strangers. There are too many of you to list you all by name, but you know who you are and as with anything we say in this letter, words alone cannot express our true feelings here, but know that we are extremely grateful.

We are grateful for the team of five main doctors that worked (and will continue to work) on Kayelee’s case especially doctor Hansen whom we feel treated Kayelee’s case as if she was one of his own daughters.

We are grateful for all the nurses and hospital staff. At one time or another, Kayelee had most all of the nurses that work in the Peds unit and we are grateful for their very attentive support. On more than one occasion they needed to act quickly and with precision and they did just that.

We are thankful for Bishop McKnight and Sister McKnight who made multiple visits to the home and hospital to check on everything and even brought Kayelee back a gift from their trip to Mexico.

We are thankful for Sister Wheeler, the ward relief society president, who wouldn’t accept “no” when she offered to help; she arranged dinners, brought groceries and made home and hospital visits. Kyle made the comment to Pam after one of Sister Wheelers visits, “man, she has come by here a lot.” And we are so grateful she did.

We are thankful for the tons of dinners from friends, family and ward members. Joe can make a mean salad, but almost five weeks of salad would turn anyone green.

We are thankful for the priests in the ward. They skipped out on mutual one night to “provide service” to our family; they helped (under Sister Stevenson’s direction thankfully) make us dinner and the next morning mowed our lawn.

We are thankful for Nedra McMurria who shuttled Kyle and Kambree to and from school and made sure Joe knew about all of the important events going on at the school (it was an interesting day when Joe found out it was school picture day and he had to do Kambree’s hair).

We are so thankful for everyone who helped watch our kids or gave them rides: McMurria’s, Yearsley’s, Goodfellow’s, Cox’s, Jensen’s, Stevenson’s, Fitzgerald’s and Kambree’s soccer coach.

We are thankful for the MANY invitations to help.

We are thankful to Chaelaine for bringing us groceries, visiting and being willing to help in any way she could.

We are very grateful for the many supportive and encouraging phone calls, emails, gifts and “get well” cards. These brightened up Kayelee’s day and provided hours of occupying activities.

Probably more than anything else, we are thankful for all of the prayers and fasting. We definitely feel this had a bigger affect than anything else. We were brought to tears on more than one occasion by the various stories of fasting we heard. We are so thankful for everyone who fasted on Kayelee’s behalf. There were several very sweet and tender stories of fasting from the little children (oh, the faith of a child); the prisoner’s at the Idaho State Penitentiary had to get special permission to do a fast (so the guards didn’t think it was a hunger strike) and they included Kayelee in their fast. We know many of you put Kayelee’s name on the temple prayer rolls. Literally thousands of prayers have been said on Kayelee’s behalf and we absolutely believe they have made a difference.

We have felt so much love from you all during this time. This has been a very spiritually rewarding experience; we feel we have learned much and grown a lot, we have seen many tender mercies from the Lord and truly witnessed several miracles.

A doctor from the Pediatric Intensive Care Unit visited one day to check Kayelee out and told Deborah to be grateful because Kayelee “has a stellar heart.” He told Deb, “with a hemoglobin count that low you'd think her heart would be stressing to get all those red blood cells to the places they need to go but for some reason her heart hasn't seemed to strain at all to get them to her extremities and hasn't gone beating crazy fast or anything, it has just stayed steady.” We are thankful Heavenly Father made sure she had a really strong heart to be able to handle this HUS.

The company Joe works for is in bankruptcy; they were previously self insured with an outside company providing insurance if they hit a high enough deductible. Because the company lost most of its employees in the bankruptcy this outside insurance company pulled their coverage leaving the company Joe worked for completely exposed, as a result they stopped providing insurance coverage for their employees, but did provide them with a pay increase so they could find their own insurance coverage. We found major medical coverage that we hoped would be sufficient. We bring this up for two reasons, first, we are thankful we felt inspired at the time to save the extra income the company provided to us in a savings account to cover major medical expenses and second, we still have an investment home in Washington that we have been trying to sell for over two years. About a week after Kayelee went into the hospital we received a good offer on this home and we accepted it. It should close in the next month or so and should provide a decent profit once it closes that will certainly help cover Kayelee’s medical expenses. We absolutely do not feel this was coincidental and we believe the Lord knew we were going to have this experience several years ago when we purchased it. One other thing to point out is the address of the home is 653 South KAYLEE Road – not the most common name in the world is it? Coincidence? We think not!

After Deborah and Kayelee had been in the hospital for a day Bishop McKnight called our home and Joe answered the phone. Joe thought that someone from the ward had somehow found out about the situation and that the Bishop was calling because someone had told him about it. Well, as it turns out the Bishop had called to ask Deborah to speak in church the following Sunday and it was through this inspired phone call that the ward members found out about Kayelee. Within minutes after hanging up several members of the ward called to offer their services. We definitely feel this was an inspired phone call, but what would have happened if the Bishop wouldn’t have called? A day or two later, Brother Stults who is the executive secretary in the ward called, he was unaware of Kayelee’s situation and the purpose of his phone call was to invite Deborah to offer the opening prayer in church that Sunday. We believe Brother Stults was Heavenly Father’s “back-up” plan to making sure the ward was aware of our situation.

We also don’t feel it was a coincidence that Kayelee’s blood levels took a significant jump in the right direction minutes before she was to undergo her first Plasmapheresis treatment; even though she ended up having this treatment anyways (nine times), her first treatment didn’t occur for another week and was at a time when her body seemed much stronger. Another experience where we really feel the Lord was watching out for her.

Brother McMurria who is the Elder’s Quorum President in our ward called up one day and told Joe he had been thinking about Kayelee and had felt a peace that “one way or another I feel that everything is going to work out.” This matched similar feelings of peace we have both felt at various times during this experience. We know the Lord is aware of Kayelee and that he loves her very much; of that we have no doubt.

Both of us are very independent people and it is difficult allowing someone else to help you, but we are so extremely grateful for the support and service you have rendered to us and we love you all that much more for it.

Love,

Joseph, Deborah, Kyle, Kambree, Kayelee, Kapri, Elizabeth



5/13/10 “Pheresis number 8”

Today she did pheresis number 8 things went well she did have a small allergic reaction after we were all done but she is doing good. She had a bit of a melt down tonight and one this morning, she has not had many of those so I know things are getting to her but she is staying so strong and each day she asks me what day it is and then counts to Friday cause she knows that is when we get to go home. We are starting to feel like we live here. It's been almost 5 weeks. Kayelee knows she resides on the 4th floor and she knows on the 10th floor there are big windows that over look Boise, she knows the gift shop is on the main floor and that they have a gumball machine on that floor, She knows how to ride the elevators and has been on every floor, She knows Kapri was born in this hospital and that when Kapri was here she resided on the 8th floor, she has seen the nursery where Kapri had her first bath(we showed Kapri too that was fun), she knows where the play room is, and the cafeteria, and where the fish live that we have named, Chub, brownie, rainbow, monster, sharky, Lily and Kate (yes carly that was for your twins). She knows where the PICU is and how to say Plasma Pheresis. Let's just say she and I know too much about this hospital. Even though it has been hard in lots of ways it has been great as well the growth and learning has surpassed anything I could have read out of a book, I have gained real life wisdom something I will take with me in the next life and so I am very grateful for that knowledge. I miss my little family so much though and just can't wait to be home again with all my children and Joe and just doing what I love doing, I know I have said that a lot I guess we are just excited:) Dr. Jenkins came in today he is Kayelee's Doctor from Portland, the Nephrologists, I think he is a bit puzzled... her platelets were 30,000 again down from 46,000 on Monday they told us the platelets were usually the first sign of improvement, that has not been the case with her. Everything else seems to be doing way better but the platelets are struggling. I think he was trouble shooting again, wondering. He said that these situations are tough because they are rare and you just don't see a lot of them so you end up using a lot of common sense, he is just not sure why the platelets are not coming up with everything else and why it took a while for the pheresis to really look like it was helping. I think by this point they were hoping all levels would be close to normal and they could send her on her way, most levels are getting close or are normal but the platelets are far away right now and tend to go up and down. I have been wondering how much the pheresis was really working myself; after he talked about using his common sense I asked him "ok using your common sense do you really think the pheresis is helping" he said "NO" I was glad he was honest. I kind of felt the same way. He really seems like a good Doctor. So in his mind I don't think he thinks the pheresis has helped a ton, I agree. The last round is Friday and he wants to finish that off and then just watch her closely and see what she does. I think he is anxious to see what time tells and what she will do after the regular pheresis treatments are over. He is anxious for the tests from Iowa and I think he will be up for doing additional tests on other things if her platelets don't come up and if those tests come back negative. That is a lot of guessing and speculation on my part just what I gather from talking with him. My hope is that she goes home and gets better and that is the end wouldn't that be nice!!! Well I will pray for that and let the Lord's will be what it is supposed to be. Our future with this whole thing is very up in the air right now but patience is a virtue I am learning slowly to gain with this whole thing. The plan is still to let us go on Friday we are so ready and excited. I haven't seen my older two kids since Monday, I don't leave my kids very often and especially for long periods of time so it has been hard, I miss them and am excited to get back to seeing them everyday. I told everyone earlier on that they put in a pic line to do the pheresis but it is actually a central line a little more dangerous, it goes straight to her heart it starts right close to her arm pit, it is quite large, infection is a big worry, we will go home with that in place until they know more. It will need to be flushed very regularly and the caps changed and she will probably need labs 2-3 times per week, they are going to watch her very closely. Thank goodness my brother John is a doctor and so I am hoping some of that stuff can be done at his clinic. They are also worried about her getting sick with anything just because they don't know what will put the HUS in a tailspin. I am a little worried about that one how can you keep a 5 year old from getting sick especially when she has 4 other siblings so we will just be hopeful and careful and live life. I have had so many friends help out this week and in prior weeks. Jenna watched my little girls all day Monday and Janet did all day today. I kept them on Tuesday and I will keep them again tomorrow on the days Kayelee doesn't have pheresis it is a little more laid back and it is fun having them here at the hospital with us. Nedra has really taken care of my older two kids a bunch, her little girl goes to the same school as my kids and she has been taking them to and from school, so much, almost every day and even keeps them some days until Joe gets home from work. She has been such a great help. I have had other friends Heather and Bobbi take them to practices and keep them in the evenings; Janet has also kept them in the evenings. The relief society has brought in tons of meals and keeps offering to help again everyone has just been so wonderful I can't thank you all enough!!!


5/10/10 “Mother’s Day”

We got to go home... not for good but they said that Kayelee was stable enough that they felt it would be ok for her to go home for mothers day. So I got my wish for mothers day, we all got to be home together. It was wonderful, absolutely wonderful. My sister made the most wonderful mothers day dinner and left it in the fridge so I didn't have to do any cooking it was so nice and the food was delicious. Joe and the kids made the day so special it was truly just wonderful to be home, I can't wait till it is for good. Joe spoiled me like he always does for mother's day and it was so fun. He had the kids make a pot to put flowers in and he painted all the kid's hand prints on the pot, I loved it. He got me the sweetest children’s book that I read to the kids, and some other fun things I had wanted, I can't believe he put all that together with all the craziness that is going on. We came back today (Monday) and they re-admitted her and she underwent the 7th round of pheresis. She did have an allergic reaction but it was very minor and it went away with Benadryl. The doctor thought her levels would be down because they didn't do anything over the weekend but I thought they would probably be up because she got to go home. Sure enough her labs were way better. Her hemoglobin was 10 (11.5-12 normal) highest its been since we have been here and her platelets were 46,000 (150,000 is normal) that is also the highest they have been since she has been here. Her kidney levels are almost normal as well, today is the best they have been. So I think going home was great therapy. She loved being home it was sad for her to come back. She has another round of pheresis on Wednesday and one on Friday and then I think as long as her numbers look good they will let us go Friday after her treatment YAHOOOO! I am not getting my hopes up but it does look like the up side now. They really don't know what this HUS will do if it will relapse or if it will be weeks, months, years, or never if it comes back. They are going to leave the pheresis line in for 3-4 weeks to make sure she does not need pheresis again soon and we will await the tests from Iowa for any definitive answers, 6weeks-3months before they are all back. Those will tell us if this is chronic or not. Amy left on Saturday it was sad to see her go. She was so wonderful, she helped so much, she took care of my kids and cleaned and made freezer meals and helped make mother's day wonderful. She brought Nathan with her and he was such a huge help as well. He did a lot of babysitting last week and it was so nice to have extra hands in the week, he even missed 2 baseball games last week and almost a full week of school to come and help us, he was so sweet It was so great to have her help. She is the best sister in the world (I can say that because she is my only one) but she truly is wonderful and she has such a big heart I have always known that but realized that even more this weekend. She has had a lot of trials and struggles in her own life and she is still smiling. She is a wonderful example to me and will always be so grateful for her service to our family. Also thanks Aunt Dana and Susan for watching her other kids so she could come and be with me. I appreciated that so much! I hope all of you had a wonderful Mother's Day!!!!


5/6/10 “Our Message today”

This is the message Kayelee and I wanted to share today (see you tube videos below). I watched these videos and they touched my heart. Life is wonderful as hard as it is sometimes. I have to admit my greatest blessing is to be a mother it is what I have always wanted to do, whenever I was asked growing up what I wanted to be when I grew up, I had no doubt in my mind and always answered "a mother". Now I get to live my dream. I feel so blessed to be living it and am so thankful from the time I was little God gave me the desire to always want to be a mother. I am so thankful for an amazing husband who makes it possible for me to stay home with our children and supports me in living my dream, and who lives and shares my dream with me. He is an amazing man. I am so thankful for 5 beautiful children who are my dream. Kayelee is doing great today she feels great and the nurses cannot believe the toughness and energy she has. Her platelets were a little lower today but her hemoglobin was up. The plan is to let us go home next Friday after he last plasma pheresis treatment as long as her labs are good enough at that point. The end of our HUS road will probably not end there but at least we can go home and be a family again. Under the microscope they still have evidence there is break down of the cells. We will go home with the catheter still in and we will await all the tests from Iowa for a definitive answer if any of them come back positive, we hope they don't (we will be waiting 6 weeks to 3 months before we hear back). We hope in the mean time she won't relapse or ever for that matter. Time will tell a lot of things. There are a lot of unknowns and uncertainty but faith conquers all and I have faith that things will be what the Lord wants them to be. When you watch the video’s below compare them to your own lives. They were inspiration to me today. When you click on the second link it will take you to just a black screen with options below. If you have time watch "the tender mercies of the Lord" and "what matters most" the first one should take you right to the link. I love sister Hinckley and I included a couple of quotes Carol sent in an e-mail today. I loved them. Tamra, Brian, and Romy came to visit us today. Kayelee was in heaven holding that tiny baby, so was I:). Tamra just got to leave with her tiny baby from this very same hospital she was here for five weeks and we shared some days here together. It was very sweet for them to visit it was the highlight of our day. My sister is holding the fort down at home, I love her so much. She has been through a lot of hard things herself; she is an inspiration to me. Here are the videos I really loved them and hope you enjoy them to.http://www.lds.org/ldsorg/v/index.jsp?locale=0&vgnextoid=bd163ca6e9aa3210VgnVCM1000003a94610aRCRD&channelId=bd163ca6e9aa3210VgnVCM1000003a94610aRCRD http://www.lds.org/ldsorg/v/index.jsp?locale=0&vgnextoid=bd163ca6e9aa3210VgnVCM1000003a94610aRCRD&channelId=bd163ca6e9aa3210VgnVCM1000003a94610aRCRD&sourceId=262b2899e7127210VgnVCM100000176f620a____ "Be kind. Everyone you meet is fighting a hard battle." — Marjorie Pay Hinckley


"I don't want to drive up to the pearly gates in a shiny sports car, wearing beautifully, tailored clothes, my hair expertly coiffed, and with long, perfectly manicured fingernails.
I want to drive up in a station wagon that has mud on the wheels from taking kids to scout camp.
I want to be there with a smudge of peanut butter on my shirt from making sandwiches for sick neighbors children.
I want to be there with a little dirt under my fingernails from helping to weed someone's garden.
I want to be there with children's sticky kisses on my cheeks and the tears of a friend on my shoulder.
I want the Lord to know I was really here and that I really lived."
— Marjorie Pay Hinckley Love you all!

5/5/10 “Round 5”

She had treatment 5 of the pheresis today. It went well and she didn't have any allergic reactions. As far as feeling goes she is feeling great. She is jumping all over the hospital and wears pretty dresses everywhere and everyone knows her name. She knows what IVs are and Benadryl and plasma pheresis, and blood transfusions etc. her numbers were better today. Her Kidneys are not functioning fully yet but getting closer. The doctor said even when they get to where they function fully it will take them 2-3 years until they recover fully from the hit they took from this HUS and she is very susceptible to dehydration we will have to watch her closely with that. Her hemoglobin was 8.3 which is way better than she has been, she does get some blood at the end of the pheresis treatment but they think she is holding her own better. Her platelets were 39,000 way better she had a platelet transfusion on Saturday but they think she might be holding her own with that as well because it went down and then went back up after a couple of days. So they finally feel like the pheresis might be doing something. It has taken longer then they would have liked. They had a test come back, it is not conclusive about anything but it gives them some clues. It is not any of the genetic tests they sent to Iowa it is one they did when we first came in. We all have Classical pathways of our complement system and Alternative pathway of the compliment system. Her Classical Pathway came back normal but her Alternative pathway came back slightly abnormal. I guess that is under the understanding of an immunist (I didn't know there was such) but they understand this stuff best but Dr. Hansen (Kayelee's hematologist) Is going to explain it to us tomorrow but basically it gives them a clue that there is something weird going on with the way stuff is bonding in her body along the lines with her immune system. I obviously don't understand it very well I looked it up today and even watched a video on U tube about it but it is pretty complex and science isn't my specialty. Even the doctors said they don't understand it completely because it is so complicated. I'll explain more when I know more but it is more a clue than anything conclusive. Her liver is enlarged which doesn't really fit with the picture of all that is going on they did an ultra sound on it today and I haven't heard the results. They looked at her red blood cells under a microscope and they are still breaking up which means bad things are still happening but maybe at a slower rate which is good. The reticules blood count was down which means she isn't making red blood cells as fast as she was when she came in, even though she was breaking them up really fast she was still producing them fast but for some reason in the last couple of days the bone marrow has been suppressed and so she has slowed that down and her white blood count is down a little. They think it may be due to the allergic reactions to the pheresis or the stress the pheresis is putting on her body. It is so complicated. When someone asks how she is doing I really don't even know how to respond. Good, bad, better, a little worse, feeling great, something new... This girl has thrown them a ton of curve balls so I don't think they are to excited to send her home because they are watching so many of her levels and she has reacted to the pheresis and now is suppressed in her bone marrow and ability to make red blood cells, so I think they just want to watch her close, even though she is jumping all over the hospital. My sister Amy is here this week and she has been so much help. It was mine and Joe's anniversary yesterday so she stayed at the hospital with Brittlee and Kathryn (her little girl that is only 6 weeks younger than Kayelee). Joe and I were able to go to the temple, I don't think it has ever been so emotional for me but the peace was amazing. Both Joe and I left feeling like that was exactly where we needed to go. We went to dinner then went back to the hospital to get Brittlee and found Kathryn and Kiwi asleep in the bed. It was so cute so Amy stayed the night with Kayelee and Kathryn, they had a great time. Joe I had such a great time just being together and not doing the tag team thing for one evening. We have learned SO much, it is amazing the growth that takes place in 3 weeks in a situation like this verses taking years to learn otherwise.There is obviously much more for us to learn. Love you all

5/4/10 “Update”

(I wrote this yesterday 5/2/10) Kayelee had another allergic reaction to the pheresis. They gave her some strong meds this time and today she is doing great I can directly tie that to the fast it helped so much I don't know what her labs look like yet but she has felt amazing today she even ate well which is something that has been hard for her to do. Thank you to those who fasted and to those who continue to pray for her. So many have asked how they can help and many have helped in other very needed ways but I have to say the prayers and fasting has been the root for many miracles in these past three weeks, so know you are all helping so much by your many prayers and fasting. It was sweet Dave a Karen told their kids about Kayelee's situation and when we fasted early on they asked their older kids to fast. They did and I thought that was so sweet, so did Kayelee. The cousins are close and they mean a lot to each other and I love that. Brian and Camilla's little Jacob (3years) old had a little fast of his own and when Camilla shared the experience with me it brought tears to my eyes. Jenny told me Aubree and Ellie did a fast as well today and took it very seriously they even started and ended with a prayer, so sweet. Our eight year old Kyle fasted for the the first time today as well and it was a really sweet experience for him to get to fast for his sister. Thank you to all the big people who fasted too Thank you, Thank you, Thank you. I know that is why she is feeling so well.There have been so many miracles that have happened with this I hope to share a few each day. My mom had a couple of really neat one's in he last couple of days with some people out in the mission field being touched by Kayelee's situation, I want to get her to write them down and then, when she does I will share them with you. (today 5/3/10)That wasn't really complete so that was why I didn't send it yesterday. Today Kayelee had her 4th treatment and she didn't have an allergic reaction YEA!!!! She slept through the whole thing from the Benadryl and at the end woke up and said "Mom I am hungry" I love it for the last two days she has acted like her normal self, it has been wonderful. She has been asking for food for the last three days, for a while I felt like we were force feeding her, they even started to feed her intravenously because she wasn't getting enough nutrition. But tonight she is unhooked from all lines and she has eaten great for the last two days, even if her labs don't look tons better at least she seems to be feeling so much better. She had another blood transfusion yesterday she has probably had over 15 over the course of the 3 weeks we have been here. They gave her some platelets on Saturday because she was only 10,000 and they were worried about her bleeding internally when she had pheresis. So right now her labs are a little off from the transfusions. Her kidneys were a little better today and that was good I am anxious to see what her platelets are tomorrow and her blood. They continue to order new tests so we will see what it all comes too. Overall I think the docs were hoping for faster signs of improvement from the pheresis but I think they are thinking also it is still to early to tell and they have seen some improvement so that is good. They have said time will tell us a lot with her condition. It is hard to be patient but I am learning all I care about is her getting better so whatever it takes to get her better so be it. The rest is just some random thoughts and experiences I thought I’d share. A doc from the PICU came over yesterday to check her out and he said she has a stellar heart he said with a hemoglobin that low you'd think her heart would be stressing to get all those red blood cells to the places they need to go but for some reason her heart hasn't seemed to strain at all to get them to her extremities and hasn't gone beating crazy fast or anything it has just stayed steady, I am very thankful for that. I know Heavenly Father knew she needed a really strong heart to be able to handle this HUS. I also asked him if he thought she could just get better for whatever reason just get better and he said I believe she can and then after that he said something I will never forget. "Medicine supports and God heals." I loved that it is so true. A couple of months ago I cut my hair, it was the longest it has ever been about down to my waist. I have had an inner desire for some reason for about a year to cut and donate to Locks of love for kids who lose their hair because of cancer treatments. While I have wanted to do it, it was still difficult to make the decision because it was so long. Well I finally did it. I donated 12 inches and cut about 15 off after all was said and done. Afterwards I shed a few tears over it. I was happy to donate and excited for a change but a little sad to part with it. Well after I saw my first bald head here at the hospital on a little girl I realized why I needed to donate that hair and it made everything worth it. It was a really sweet tender mercy for me. Tonight our neighbors here at the hospital got to go home they have been here one day less than us and tonight they were going home Kayelee saw them leaving and whispered "mommy I want to go home" It was sweet she is ready, and so am I let me just tell you. Joe stayed with her all day Saturday and I went home and was a mom again and as I was driving kids to the soccer game I called Joe and said I Love what I do, I love just being a mom and doing mom things. It is not always easy I will admit that but I love it more than anything. It was difficult to be home without her though it's really hard because it is just not the same.. Pam left late Saturday and she was nothing short of a real angel. We loved having her she just took care of everyone even Joe and I it was wonderful. Kayelee loved the time she got to spend with her and Zac and my other kids were so well taken care of while she was here. We were sad to see her go. Brian thank you so much for sharing her with us for a whole week!!! It was so fun on Sunday Joe's aunt Lorna walked in it was so wonderful to see her and visit with her, she brought some really fun things for Kayelee and a treat for me from her Sandy and Barb (Joe's other aunts) we love them so much. It was so fun and such a treat to visit with her. Sandy also has a really good friend who lives here in Boise and her sister is a nurse and tonight she came in and said hi and visited with me, she was so sweet. Everyone knows us around here. People are always so kind and wonder when we will be able to go home. Everyone loves Kayelee and thinks she is so cute. Sometimes past nurses we have had will pop in just to see how we are doing, it is very sweet. The bishop and his wife also came last night they have been so concerned and caring! Our relief society president came by last week to see Kayelee and brought her a treat and a game and she keeps stopping by my house and dropping stuff off. Kyle told Pam "she has come by a lot". Everyone has been so kind. Kayelee wore a princess dress all around the hospital today and we have hospital privileges which means we can go where ever we want in the hospital and since Kayelee was finally feeling good enough we rode the elevators all over the hospital it was a lot of fun. We went to the top floor and saw the view it was beautiful Kayelee loved it. I was really sweet we went to the gift shop but it was closed but Kayelee said I want to buy the kids something. It was sweet to see her think of others even when she is the one stuck in the hospital. My sister Amy just got to my house tonight to help out this week, we are so excited and grateful to have her. Tomorrow is mine and Joe's 9 year anniversary. She offered to stay with Kayelee and keep Lizzie, while her son Nathan babysits the other kids. We are going to go to the temple and go to dinner I am so excited to go out with my husband. I am so grateful to have my sister here too. Tonight we were laying in bed and Kayelee asked if you wished on the North Star if you would really get your wish, then she said cause I wish to be a fairy with a magic wand to make me all better. I told her Heavenly Father could make her wish come true if it was the right thing and that she always needs to wish but with wishing she has to make her wish and then do all she can herself to make her wish come true. There have been some very sweet tender memories made here; I hope I never forget them. Sorry tonight I know it was a little random but I wanted to get all these thoughts on paper. Love you all!!!
Deborah


4/30/10 “Tough Day”

Kayelee did have an allergic reaction to the plasma donor yesterday, I felt like that was what it was, that big ball on her leg was the start of it. In the night she spiked a fever and by morning she had swollen lips, itchy eyes and ears, a puffy face and a high fever with little spots forming on her legs. She is pretty miserable, but we are grateful it was not an infection. They held off on the pheresis today until she feels better, I have had my little girls with me today and Pam and Zac it has been nice. Melania my visiting teacher and friend brought by some flowers and Troy and Robin were in Boise and stopped by to see us it was so fun. Amy had sent a bunch of really fun stuff with them for my kids and Kayelee it was so sweet. Joe's Uncle and Aunt Stephen and Betsy Duford sent a bouquet of balloons and little stuffed pig. Joe's Dad Larry and his wife Paula, sent a big ol' package called Phun with Pheresis so Kayelee would have a present to open each day she has pheresis it was done up so cute in tan and green paper and Kayelee was so excited about it. They also sent presents for the other kids too. WE feel so blessed I know I have said that allot but we do. What wonderful friends and family we have. Pam has taken such great care of my family this week and even worked it out so she can stay into next week she has been amazing. Jenny sent out an e-mail asking people to fast this weekend (thank you Jenny for doing that), she asked me first and I said that would be ok especially since this Sunday is fast Sunday anyway. Please do not feel like you have to at all, all of you have already done so much. I feel bad asking another thing from any of you. So only do it if you'd like please don't let it be burdensome. Also if any of you don't want the constant updates feel free to just shoot me a quick e-mail back and let me know I will not feel bad at all I know this is dragging on and I am filling up your inbox each day. So let just let me know. Not a big deal at all. I feel sad for my sweet girl, today has been a hard day she feels pretty cruddy. She is a trooper every time they ask her how she is feeling even if she has a fever and a puffy red face and her ears, eyes, legs and arms itch she always says good. Today after she had gotten some fun things from people Pam said to Kayelee teasing her "man maybe I need to be sick so I can get all this fun stuff." Kayelee was very quick to answer back "you don't want to be sick." Then she said "it's fun to get all this stuff but you don't want to be sick." She is ready to be home, and so am I hopefully some day soon. It's funny because you'd think I’d be crawling out of my skin by now being here almost 3 weeks but it is hard to go home. I just want to go home and know she is with me and well and whole. So I will be ready when she is ready. I miss my family though so much. I just don't get to see them enough with us being here. Everyone is holding up really well though. I have come to understand the strength of each of my children they are all really strong. I know they have to be in these last days. No more rambling today. Thanks again for all you do we love you so much!

4/29/10 “Round 2”

Every thing seemed to go well today, when we came back to our room and I took off all her clothes for a bath I noticed a baseball sized knot on her thigh I called the nurse and she asked a couple of Doctor's to come in and they came to look at it and one said it looked like a lymphoma and that she maybe needed a CT scan that that it was maybe infected or something and that she needed antibiotics, honestly I thought he was an idiot (sorry for my language but really) I am not a Doctor and I am really grateful for good Doc's but how far fetched can you get he obviously knows more than me but that just seemed way out there and he was a surgeon so I am not sure why they were asking him anyway just funny. My first thought was an allergic reaction to the pheresis, especially since Kayelee said it was itchy, and one of the nurses suggested a bleed inside, with her platelets being so low that made sense too. I asked them to call Kayelee's real doc before we started her on antibiotics again. He wanted an ultra sound so we did that. Nobody has come back to worried and the swelling is going down. The ultra sound tech. said it looked like just fluid not blood under he skin, and they never started her on antibiotics thank goodness. I think it is fine but I think it was an allergic reaction so I don't know what they will do for tomorrow. Her platelets were 10,000 today, worse then they have ever been but her kidney function was better. We will get labs in the morning again so we will see what happens, the doctor said it would take a couple of days to see good results so that would be tomorrow or sat. Before we see some really good changes. It may even take a bit longer. It was great that the kidney function was better. I'll let you know how tomorrow goes.

4/28/10 “Round 1"

"If these doctors don't say they will let us go home right now I am going swap them in the bottom, and then they'll say they will let us go home." That is what she told me tonight. It was so cute, she wasn't mad just serious and she really did say swap not swat. Well the plasmapheresis went really well Kayelee was a CHAMP nothing scares that girl. Even when they hooked her up to all the tubes and blood was going this way and that and plasma was going this way and that she did just great!!! She sat with Joe in his lap for a while before they got started and you could just tell she felt so safe in his arms. He is such an amazing Daddy. The whole thing took about 3 hours everyone started ordering blood at the last minute to make sure they got enough blood for all the tests they needed because once they do the plasmapheresis her blood is altered so it takes a couple of months for them to be able to do some of these tests again. So that was a bit crazy as they were trying to get started, and I think I know why her hemoglobin is a 5-6 all the time because they take so much blood out all the time for these tests. No just kidding but it is a little ironic that they have to give her blood but are always taking it out as well. Her situation is so rare it really has given everyone reason to test every little thing. This was a bit frustrating... They sent her blood to Iowa on Monday and whoever sent the test only sent plasma well there is no DNA in plasma so they had to send more blood and start over. It really didn't matter that much though because it will take 6 weeks to 3 months to get all the tests back because they are not common tests. I really wish we didn't have to wait that long especially since they want to keep the catheter in her until they find the cause. I am bummed about that because I was hoping to get a pass to the pool and swim a lot this summer but we might have to change plans a bit. Kayelee has been so excited about swimming so I hope we don't have to leave it in all summer. He said if all goes well he might take the catheter out sooner, but then you run the risk that she might need pheresis again and then surgery to put it back in... So it will be a balancing act for a while until they can figure it out. I really hope these entire doc's get some good experience and exposure from this so they can help future patients. I've sure gotten an education myself. Now I should just be a doctor, ha ha. That’s what we have John for. I have been so grateful for him through all this I have come to realize he is not just a great brother he is a great Doctor. I'll share our experience of driving to the hospital sometime. John is my brother for those of you who don't know and he is a Med. Peds. Doctor in this area. I am so blessed to have him close. Everyone rants and raves about him when I go into his office. This is one really positive thing. They have only had one kid in the state of Idaho ever have this kind of HUS and they did pheresis on him and they did it on him over 100 times so they have had some good experience, they also do pheresis for other illnesses, the same nurse that did some of his treatments did Kayelee's. Well over all things went well and I was happy she did so good they say sometimes they can have a hard time breathing or that the process ties up calcium and makes your lips tingle and stuff and she didn't have one side effect. Thanks for your prayers I know that is part of why things went great. She was exhausted tonight it was a lot for one little body to handle, she went to sleep in my arms and I am glad she is getting some good rest so she can go at it tomorrow again. Now lets hope we see some results in the labs. The Doc. said it may take a couple of days before they see results. If all goes well and she shows improvement they will let us go home Friday after the treatment (I'll believe it when I see it) But then we will have to come back in mon. wed. fri. For two weeks for the rest of the 6 treatments. So here goes one more round tomorrow, I'll let you know how it goes. It's nice to have the 1st one out of the way. I included a few pictures again. One is of the plasmapheresis machine it was really cool I have to say I am grateful for modern medicine or she would not be alive. It really was an amazing process they spin the blood to separate it from the plasma, take out the bad stuff and then replace it with good stuff. The one with Kayelee and Joe was just before they got started and I included one of Brittlee because it was her 1st birthday yesterday.


4/27/10 “A bit more detail”

Here is a little more detail I am better rested so I can think a lot better. Last weekend they were thinking about sending us home Monday (yesterday) but over the weekend her platelets continued to drop and so did her hemoglobin and hematocrit. Yesterday she was pretty low and this and this morning her platelets were lower then they have ever been 13,000 her hemoglobin was 5.8 which was about what it was when we came in. Yesterday afternoon they started thinking plasmapheresis again. We had a long discussion with the nephrologists who is in Portland over a conference call with Joe and I. They are leaning towards this being the atypical HUS which is caused by genetics, if I understand it right it is a lack of a certain protein. There are actually a bunch of different genetic kinds they are just super rare all of them but some are better than others to have. If she has one of those they don't know which one, they found a place in Iowa (they thought they were going to have to send it to Italy or the UK but have found that now there is a place in the US, so we will get the tests back faster) that will do the test that should give them some definitive answers as to if she has the genetic kind and what she is lacking. This is so rare it is hard to even compare it to other cases there is only one other kid in Idaho to have had it in the last 10 years and the nephrologists has never seen it in Portland where he practices. There is still a chance that it was a bacteria but I think in the Doc's mind that chance is getting very small. I asked them why we have not seen it before now since she is 5 and they explained it to me like this; it's like she has been riding a bike for 5 years on a straight road she has never needed her brakes so it was fine that she did not have brakes because she never needed them but something set her off, she hit a down hill and had no brakes and so it made her crash so to speak so she is fine if she doesn't need the brakes but when she is going down a hill (an illness or something that would set her off) she needs them and doesn't have them so it sends her in a tail spin. Kind of a different way to explain that but it helped me understand it a little better. This is only if she has the genetic atypical HUS if it is bacteria caused then the bacteria caused the crash. Yesterday we also spoke with Dr. Hansen for an hour as well, he is the Doctor who admitted us and was on call the 1st week she was here we feel like he has been a huge blessing for Kayelee and he was so helpful yesterday. So today the doc's (there are 5 of them) are going to get together and talk about what is the next step to take, sometimes it is frustrating because there are so many doc's following her case and each see's Kayelee and has their own opinion about things which makes it difficult for us to know what they are thinking, especially when they tell us different stuff, so today they are going to figure out what is best I think they are all thinking plasmapheresis which is what Joe and I think should probably happen as well. If that is the route we go she will start on Wednesday and she will be admitted to the PICU while she has the pheresis it is kind of like dialysis but instead of just washing the blood and putting it back they replace the bad plasma with new plasma and wash the blood. They will most likely do 9 treatments of this over the course of about 2 weeks. The first 3 treatments need be done in he hospital and then if all goes well and she is doing better we can go home and do the rest on an out patient basis. Hopefully during the course of the 2 weeks we will get some of these tests back that are definitive as to if it is genetic. If it is not (which we hope it is not, the road is a lot rougher if it is) then we hope the plasmapheresis will heal her blood and she can be over this. We feel very good about a full recovery for her so we are praying the right decisions will be made that can make that possible for her. I will let you know what happens over the next couple of days as decisions are made. She is a lot stronger as far as the way she feels right now then when they wanted to do the first round of the pheresis I think the order and time as to when things have happened has all been in the Lord's hands and he is aware and knows when and what needs to happen. Pam (Joe's sister but I am the one who claims her more:) I love her so much) is here right now. She has been nothing but wonderful!!! She stayed the night and spent most of Sunday with Kayelee so I could go home and be with my other kids and Joe, it was hard to go home without my Kayelee it was a weird feeling with out her there, but it was nice to spend some time at home and with my kiddos and Joe, it was a good break, it was so nice of Pam to do that, she has a little baby of her own and she just kept him with her the whole time while she was with Kayelee. Kayelee loved it! Yesterday we met with the Doc's and it was just so nice that Pam was at our house with our other kids and we did not have to worry one bit about them. She fed and put them to bed and even had Family Home Evening with them. They sang "I'm so glad when Mommy and Kayelee come home" to Kayelee and I when they called, it is so nice to have her here. Joe was even able to stay a while last night after our meetings with the docs, because Pam was there. It was so fun he and Kayelee were buying games and fun things on the i phone they bought Pac man and Uno and a Dora game. Joe told Kayelee not to tell me they were buying all that stuff loud enough so of course I could hear and Kayelee just giggled. I have been so grateful for Pam's help she has been wonderful. So many people have helped so much we feel so blessed with all the help we have received, it has been hard being the receiver, I don't think I can thank all our friends and family enough for all the help. A couple of runners from Boise state just stopped buy and gave Kayelee a Boise state bronco (a little beanie baby) and took a picture with her. That was fun. Its was fun for me talking to them they run some of the same races I used to run. I am excited to get back to my running routine when I get home. I really miss running and exercising. I plan on still doing a half marathon this summer and I am really looking forward to that especially after being cooped up in this hospital for so long. Yesterday I fixed Kayelee's hair and we put a dress on her that my dad bought for her when he was here it is all yellow with a green ribbon and a flower on it and she looked like a sunshine everyone was commenting on how cute she looked even the doc. I slept with her last night, this morning we were laying in bed talking and I told her about the plasmapheresis first she asked if they would poke her I said no, then she asked if I would be with her and I of course said yes and that was all she needed, she could do it. I felt so blessed to know that I can be that comfort for her that if I am with her even if it's scary she will be ok and she can do whatever she needs to do. I have realized how much I truly love all of my children, I always thought I would do anything for them and have been a little bit tested with that with all we have dealt with with Kambree's hemi-plegic cerebral palsy, but now dealing with this I KNOW I would do anything for them, anyone of them. I have truly felt my heart hurt and have come to understand a love I didn't know I possessed. A more Savior like love. As it is with any trial, there are always blessings and miracles and we have seen so many. I will admit though each day and especially specific scary moments you wish it could all go away, nobody wants to see their child hurt, but these are the refiner’s fires we have to go through. Everyone all of you have had your own and so you strengthen us in your experiences as we go through some of ours and when we are in the fire the blessings of our Heavenly Father pour out upon us. I have a real testimony of that. He does not and will not leave us to bear our burdens on our own. He has sent each of you to help lighten ours and you have with all your help, visits, prayers, fasting and your love. I'll let you know how today goes. I included a couple of pictures this time and there are more on our blog http://www.jdaustin.blogspot.com/ if you don't have an invite to view it and want one just send over your e-mail address and we will add you.

4/27/10 “Brief”

I am to tired to explain much tonight but I will give you a brief update and I can explain more later. We are still here. Her improvement has stayed the same for the most part but the platelets have gotten worse 15,000 things are still going on in her body. We talked with the doc's today and they want to do the pheresis Wednesday if she is not showing much more improvement. The 5 doc's will be meeting tomorrow to discuss things. Then they will decide. It was a long day and I am tired. She is feeling so good it seems (obviously not inside) but she is acting like a kid again and that is wonderful I love it. I dressed her up in a cute dress and we gave her a bath and fixed her hair and she loved it. It is really fun to see her so happy again. Tomorrow is Brittlee's 1st birthday and I was hoping we could be home for it, we won't make it so luckily she is only 1 so she won't know the difference if we celebrate it in a week or two when we get home. I can explain more later but I am exhausted. Please continue to pray that she can get over this on her own if that is Heavenly Fathers will. If it isn’t then we will go forward with the next step. I believe this is very much in Heavenly Fathers hands and I have the faith that whatever his will is will be done. I find a lot of strength in that. I know all your prayers have made a huge difference. They have been felt. Thank you! Love you all!

4/26/10 “Little Kiwi”

They found a place in the U.S. that will test for A-typical HUS. They are sure she has HUS (Hemolytic Uremic Syndrome) they are just concerned it is A-typical the more rare kind caused by genetics. They will send her blood away for this testing tomorrow. It could still very well be caused by a bacteria they just have not found the source.Her blood is still struggling. Her hemoglobin is hanging out right around a 6-6.5 and it needs to be 10-11 and her platelets are 23,000 and need to be 130,000 she bruises very easily, when they pull medical tape off her skin it bruises. They want to leave the pick line in case they need to do pheresis and because her platelets are so low it is scary to take it out because of the risk of bleeding. So we may be taking her home with the pick line still in, I am worried as to which child will pull it out first, A little scary. They want to see her platelets come up a little before they send us home. If they let us go home tomorrow they have to draw labs at least once a day and then maybe blood transfusions in the Dr. office as needed until she gets better on her own, or they find out it is atypical, then they will probably start pheresis.I have faith things will work out the way they are supposed to what ever that is. She is an amazing little girl. She is bouncing around the hospital room with hemoglobin of around 6 and platelets of 23,000 we would all be in our beds not moving. The Dr. thinks she could have been low for a while and she can just function at these levels. Crazy how tough kids are. The other night she ran down the hall because she was finally unhooked from all iv's I told her to stop running but of course that lasted a couple of minutes and then she was running again I told her to slow down again. We made it back to the room, she threw up, that was just more than her little body could handle and then minutes later she was blowing bubbles and everything was fine kids cease to amaze me.Her Kidneys are not functioning normally quite yet but they are doing much better.I'll let you know how tomorrow goes.

4/23/10 “Kayelee”

I really don't know what to think... Her kidneys are doing way better which is so so good. She continues to show slow improvement but her Hemoglobin is still really low, she needed a blood transfusion yesterday. Her platelets are still super low as well. They are talking about letting us go home Monday (which I thought I'd be so excited about but I am a little nervous about with her hemoglobin and platelets still being so low) with frequent visits to the doc. to make sure the levels continue in the right direction and don't get worse. They are going to send some labs to the United Kingdom or Italy for testing to see if they can narrow down the cause, and hope it won't come back but they just don't know. The fact that she is getting better on her own without pheresis is a good sign. We are so ready to go home!!! But I would like to know she is really better and not worry about the constant bruising and maybe bleeding inside, or kidney problems. They unhooked her from ALL IVs tonight, they still have them in her arm and have the pheresis catheter in her but she is not hooked up to anything, that is the first time in 12 days that has been nice she loves being able to walk all over the room with ease. Daryl and McCall have been here since yesterday and they have been so much help!! They stayed with Kayelee last night while I went to Kyle's 1st pine wood derby which he won!!! He is the youngest scout and he (and his Dad of course) won!!! That was fun and then I was able to stop and see John and Amanda's new baby on the way back to the hospital. They also helped out today with the kids and hung out with Kiwi and I. They are with the kids tonight so Joe and I can stay at the hospital together. They have been so wonderful and we have loved being with them and their help has been awesome!! Joe and Kayelee are lying in the hospital bed watching the Jazz game together talking about the next time Kayelee will be able to play soccer. It is a cute sight. I think I know who's hand the remote is in:).I would love to have more answers and when or if I get some I will be sure to let you know.Thanks so much for your continued prayers and concern.Love you all!!

4/22/10 “Kayelee”

Well... Kayelee asked me mom do you want to play tic tac toe and I said sure I walked over and she had two tic tac toe grids drawn on each thigh with a black crayon. Then she was jumping all around and monitors and such were beeping and beeping because she was being so wiggly. And when bedtime rolled around she could not go to sleep. I am glad to see her spunk is back even if they won't let us go home yet. As far as how she is doing in terms of us getting out of here her numbers are doing slightly better over time, she is improving just not really fast. They are very hopeful she will not need the plasmapheresis now but they are going to leave the catheter in there for now just in case. If she can continue to do better and not need anymore blood transfusions, eat and drink on her own over the course of a few days I think they will let us go home. Maybe next week if we don’t have any big set backs and she can get her hemoglobin up. Her hemoglobin is hanging out right around a 6-7 and she needs to be a 10-12 so she is pretty low there and her platelets are around 30,000-40,000 and she needs to be up around 140,000-150,000. She will probably need blood at least one more time so we will see. They are actually talking about words of home for us though which is an improvement, they still say days and maybe even a week but I don't think they think months anymore. Her kidneys are doing much better and starting to function more and more on their own. The kidney levels have come down significantly which is good they are still not normal but way better then they were when we came in. It was wonderful having my parents here I think they really lifted Kayelee's spirits and they did mine so much. The first thing Kayelee asked the next morning after they came is "did Grandma go home?" Grandma was right there by Kayelee and she said "Hi Kayelee" She was grinning ear to ear and so glad to know Grandma had stayed throughout the night. I know my parents are so busy right now on their mission getting everything ready for the upcoming treks but it was a selfless act of love for them to come and be with Kayelee and me. I had told my mom the night before as I was crying to her about Kayelee's condition that I now really knew now how much she loved me. I love Kayelee and all my children so much and would do anything for them and I think when times are a little rougher like these you realize the strong bond of love a mother has for her child and that you would do anything even give your life for that child if that was what it took. It helps me understand a little more the strong bond of love my own mother has for me and it has help me understand the strong bond of love that our Heavenly Father has for us. It is sometimes so sweetly overwhelming to know we are loved that much. There really has been some sweet learning experiences as there always is with times like these. I think I have learned a lot about love with this experience I can’t believe the outpouring of love that has come from all of you. I truly believe Kayelee would not be where she is it terms of getting better with out all your love, fasting, and many prayers. Thanks so much. Well we will see what today brings… Hopefully good news. I will keep you posted. Love you all so much, Deborah and Kayelee

4/19/10 “Kayelee”

We have had a few set backs as most of you know. Yesterday we found out she has pneumonia, we have a slight glimmer of hope this could be he cause of the HUS but it was most likely just caused by being her in the hospital, Last night was a rough night her lungs were struggling and her temp go up to 104.8 they did a couple of breathing treatments and gave her some Tylenol they were thinking maybe they would need to put her in the PICU but the fever came down and they put her on some oxygen and she did better and by morning she was doing better. She had an awesome day today we walked around 3 times and she was up and down a lot it was really good for the pneumonia. We are working on getting that better and hopefully we will see more improvement in the HUS. They did end up giving her antibiotics because of he pneumonia, which may or may not have an adverse effect on the HUS, time will tell. Her levels that needed to drop and the ones that needed o go up did just that a couple of days ago, some have gotten worse and some stayed about the same she is kind of stagnant hopefully as he pneumonia goes away we can see some more improvement on the HUS. As of right now they are still going to hold off on the plasmapheresis. She did have another blood transfusion today, the hemoglobin dropped to around 6 (it should be 10-11 or even 12) two steps forward and one step back. We are hanging in there and her spirits were very good today. We had a fun day together today. We had a vey sweet tender mercy today... A very very big one.... I was laying in bed with Kayelee and the door opens and who could it be another nurse... no way Grandma and Grandpa Freeman, can you believe it. They came to be with us all the way from Wyoming. It was a wonderful feeling with them being here and we had an awesome rest of the day to having them here. Kayelee just loved it. And I was just smiling ear to ear. This is there super busy time of the year last year I had a baby at this time and they could not come so you know it was a huge sacrifice for them to drop all and come. They have to leave tomorrow. But it added so much strength to me and Kiwi (that is her nickname) for them to come. It was so so wonderful. I am so sorry I didn't post anything last night. Sometimes I just get way too tired and last night was a rough night. This last weekend Carol and Amanda came and they were sweet angels. They came in and helped out with the house and with the other kids so much. They stayed with the kids one night so Joe and I could be at the hospital together. It was so wonderful. Lizzie was even sick that night and Carol kept her, it real was so nice, and they visited Kayelee and showered her with loves and kisses, and she loved it so much. They helped out so much it was great and wonderful to have them come. The

4/18/10 “:)”

Her levels improved again! YAHOOO! We know we are seeing improvement for sure now. Yesterday was the hardest day for her, that surgery really wiped her out and she is pretty sore from that pic line so yesterday she didn't even want to mover her body. She asked me to just hold her and I could tell she was hurting. We sang some primary songs and read some books. This morning she woke up with happier spirits. I'm hoping she can get all the anesthesia out of her and that it won't be so sore for her today. The labs for this morning should come back soon and we are hopeful again that they will be better I will let you know.Sorry I didn't send the e-mail last night I was trying to write it and my eyes would not stay open. The Nurse just came in and said the levels again were slightly better:):):):) In a little bit she will show us exactly how much in terms of the numbers. She is doing better!!! YES! They will draw her blood this evening and I will let you know how it goes. Love You ALL!!! Deborah and Kayelee

4/17/10 “Some great news!”

Well we have some good news!!! (I am so excited to say that a first this week)They wheeled her into the PICU this morning and we were waiting to get started with the pheresis when the Dr. came in and said. Her labs show some improvement in her kidneys. The BUN was down and the Creatine (which has not gone down since we have been here) was down finally, we want these levels to be down. Joe and I were so so super excited! They called Kayelee's docs and they said lets hold off on the pheresis, they want to see if she can kick this on her own. YAHOOO! We are not trying to get our hopes up but we are so excited for some good news and some hope for recovery on her own, that would just be wonderful!I know the Lords hand has been in all of this but yesterdays events made it especially evident. Her surgery to put the pic line in was supposed to be at 1:50 we were wheeled down to the OR and ready to get her prepped for surgery when the surgeon came in and said he had a 7-8 hour surgery that he could not delay any longer so he was going to have to push ours back to way later that night or see if his partner could do it. So we came back up into her room and waited. I called Joe to tell him what happened and told him for some reason I felt like that was a good thing, that I didn't even mind it, it ended up being tomorrow just so we could give her a little more time. Well they called us a couple hours later and took us down. Little did I know those couple hours would make the difference? So we went down and they preformed the surgery by the time it was done and she was in recovery it was after 6 She was supposed to start the pheresis that evening. The Doc came in and said they decided to start it tomorrow and I was very relieved I felt really good about that. Well that gave her enough time to make a turn. When they drew labs this morning just before pheresis they showed some REALLY GOOD improvement!!! Her platelets were even up. I very much feel the Lord help push that surgery back so Kayelee could show them her own improvement. A wonderful Miracle!!! She still has quite a road a head of her but this is the first step!!She is quite sore from the surgery and now has tubes in both arms so she doesn’t want to move her body very much but her spirits are high and she is doing great. I did a little dance for her this morning after we found out the good news and I got a pretty smile from that cute face.Thank you for the many prayers and fasting. The out poring of Love has spilt over and wrapped many hugs around us and we have felt the love, prayers, fasting, thoughts everything so much. She has needed them and will continue to need them as she heals from this illness. We love you all so much!!! Also we moved rooms so we have new phone # 208-381-2889 they draw labs again at 5:00 and we will keep you posted as to how those go. Love you again all so much!


4/17/10 “Today’s Happenings”

Today was a long day... So they did surgery to put the pic line in which is how they do the plasmapheresis. It was really tough for me to see her undergo surgery when she is so sick. She made it through. They were going to start the first plasmapheresis treatment tonight but it was late after we finally finished up surgery and I was relieved when the Doc. Said she would start the first treatment tomorrow. The surgery wiped her out and she is tired. So tomorrow at 7:30 am she will get her first treatment of plasmapheresis (her first of 9, we will be here for a while), we are anxious to see if it will help her. Her kidneys made a tiny improvement on one of the levels they test the other stayed the same but hey we will cheer for any improvement. She had another blood transfusion so that she could be strong enough for surgery and they even transfused some platelets to give her strength for surgery.They have taken us out of isolation here at the hospital which is nice because they have no reason to believe hers was caused by bacteria.Kayelee's little body is exhausted but her spirits are really high. She just amazes me daily. She has not complained once. She longs of home but knows we can't go there until she gets a little bit better.I think the Doc. could feel I was feeling the weight of all this and when he came in tonight to talk with me I was in tears, the kids were singing Kayelee a primary song over the phone before she went to bed and it was so sweet, and I had been talking to Joe before about the days happenings so I was kind of tender. The Doc looked at me and put his hand on my shoulder and said you don't have to act like this isn't hard because it is. He said it's ok even around me to act like this is hard. It was very sweet I felt his sincere kindness and understanding.I really like her Doctor he is really good. He is LDS and I love that and he also has 5 kids of his own with the oldest being 8 so we even share some things in common. He is very knowledgeable and I think he is treating Kayelee the same way he would treat his own child and that along with his expert knowledge is the best treatment I feel a Doc. can give. He has been more than willing to answer all our questions and concerns and spend lots of time with us helping us understand a little of all this. My Brother who is Doctor who first helped catch Kayelee's bad condition and made some key decisions for us early on (even re-arranged his patients so he could rush us to the ER wit Kayelee and I when he realized things were so bad, he has been amazing and a lot of strength to Joe and I) Has a lot of confidence in Dr. Hansen. So we feel like we are in good hands.Our bishop and his wife came today and brought Kayelee the cutest little jacket she was very excited and even asked if she could wear it today. They brought pizza and made cookies for Joe and the kids. It was very kind and their visit was comforting. Chaelanie picked us up some groceries from Costco today and that was very helpful!So tomorrow we are hoping and praying for some great results with the plasampheresis.4/16/10 “Update”

Here is the update... She is still staying kind of stable; there was a drop in her hemoglobin so they gave her another blood transfusion. She really needs to start kicking this on her own and she is not. The doctor came and talked to us tonight for a long time and he was really helpful in just understanding why we still don't know what caused it. Really we may not know She has what they call Hemolytic Uremic Syndrome not caused by the most common sources, pneumonia, or e coli (but they are not ruling those out totally yet but it is a pretty slim chance it was either of those no tests have come back positive on those). There is not a perfect test to say yes this will give us the answer especially since so many of her tests have come back negative giving us a lot of unknowns.What they do know is she is not getting better she is really just staying the same they really need to see some improvement and we really don't want to have to keep giving her blood transfusions, but she is just not keeping her blood levels up on her own.They want to do plasmapheresis tomorrow here is what it is. What is plasmapheresis?Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure.What's involved in a plasmapheresis treatment?A plasmapheresis treatment takes several hours and can be done on an outpatient basis. It can be uncomfortable but is normally not painful. The number of treatments needed varies greatly depending on the particular disease and the person's general condition. An average course of plasma exchanges is six to 10 treatments over two to 10 weeks. In some centers, treatments are performed once a week, while in others, more than one weekly treatment is done.
A person undergoing plasmapheresis can lie in bed or sit in a reclining chair. A small, thin tube (catheter) is placed in a large vein, usually the one in the crook of the arm, and another tube is placed in the opposite hand or foot (so that at least one arm can move freely during the procedure). Blood is taken to the separator from one tube, while the separated blood cells, combined with replacement fluids, are returned to the patient through the other tube.The amount of blood outside the body at any one time is much less than the amount ordinarily donated in a blood bank. This is me talking again. They have seen other patients benefit from this and turn a corner and get better. We are getting a 2nd opinion on it but if we feel good about it we will probably let them do this tomorrow. When the Doctor was here tonight we asked him a lot of questions. Many of you have expressed concerns or heard of someone with similar symptoms and this is really what it was or this is how they got better etc. And we really appreciate your concerns we actually asked him most everything anyone has brought to our attention and he had a vey good response to everyone as to why it was none of those things. So just so everyone knows they have explored and thrown around many different options and what is going on in her body is HUS the cause is unknown at this point. We are going to go with that until she gives us cause t believe otherwise. Kayelee is in good spirits she had a couple really good laughs today as she was throwing a stuffed bunny at me and just giggling because she thought it was so funny, and also later as she and Kam's were listening to one of Kapri's funny stories of the day told by daddy (he can always tell the stories the best and make everyone laugh). It was just so fun giggling together about silly things. Those were some sweet moments. Some really fun packages sent from aunts that also really boosted Kayelee's spirits. She loved the contents and loves more the people who sent them to her. She so enjoyed her siblings and Daddy coming to visit. We are doing good and feel so much strength from our family and friends right now. We are also continuing to feel tender mercies daily. As Kayelee and I were sitting here in the hospital today the door opened and a complete stranger came into our room. She introduced herself and told me she was Lana Nielson's sister in law. Lana was my Young Women's leader when I lived in Basin City(a lady I love and admire so much from my growing up years) She said she came on behalf of Lana and the Basin City Second Ward (the ward I grew up in and one Joe and I were in when we lived in Washington where we had Kayelee) she brought flowers and some sweet presents for Kayelee, and more than that a presence of Love and caring, it felt as if she represented everyone who could not be here but has fasted, prayed, thought, cared, called, etc. on behalf of Kayelee it was one of those very sweet tender mercies. We were two complete strangers with some things in common and we sat and visited for probably an hour it was so fun and sweet and it boosted my spirits. So we are doing good in here even though we are anxiously awaiting the time when we can all be home as a family again. Thanks again for your thoughts and prayers. They really are felt! Love you all! Deborah, Joe, Kyle, Kambree, Kayelee, Kapri, and Lizzie

4-15-10 “Kayelee”

I am sorry it has taken me so long to get out an update, this is as of today (Wednesday) I try to tell a person here and a person there and hope others can share you can always call you are not bugging us we won't answer if we can't. Our phone # at the hospital is 208-381-2887 and my cell is 208-890-9773 feel free to call. Here is an update... They think (pretty sure but not 100%) right now that she has Hemolytic Uremic Syndrome you can look it up for more details if you want but basically bad toxins are bugging her kidneys and blood. Right now they are really trying to get her kidneys to do better, at least they are staying the same and not getting worse like they were. They are giving her fluids constantly to keep her flushed they just don't want to give her to much and have them stop so they are watching her urine out put pretty close. If she gets too much fluid the kidneys will stop putting out urine and then the lungs will fill with fluid. And if the kidney function gets much worse they will have to do dialysis, so we really need her kidneys to get better they are really hurting right now from all the toxins from the HUS.The reason we were hoping for them to find first e-coli bacteria and then most recently pneumonia is because they would like the cause for the Hemolytic Uremic Syndrome (HUS) to be caused by bacteria, and those are the two bacteria causes it could be. There is a very rare cause that is genetic that would be not so good. Neither is good but those two causes would be better. Today they did some tests and it doesn't look like pneumonia and it doesn't look like e-coli either. So that is not good but they are still hoping to find that bacteria and so are we. They are waiting for some more test results tomorrow that will hopefully be more conclusive I will try to send an e-mail out if there is a big update. She did poop late tonight (hooray!!!) (I don't often cheer for poop but I did tonight and Kayelee was so proud of herself she said "now we can go home" She was hoping that was her ticket out of here it was cute. The poop was not at all diarrhea but if they could find some bacteria in that that would be so good. They sent it away for testing so we will see. Her temperature was a bit elevated tonight but they think she has a UTI and they are leaving it untreated because the antibiotics will harm the kidneys more so we are hoping the infection will not cause fever. It came down a little bit so let’s hope.She has had 3 half pints of blood put into her little body since we have been here but she has not had to have any more today so that is good she is holding her own a bit so hopefully that will continue to be the case. Mostly she is staying stable witch is way better than worse but we would love start seeing some improvement.They are just walking some fine lines as to what is best and they are trying very hard to find the cause of the HUS and get her kidneys functioning better.I just wanted to THANK everyone so very much for their fasting and prayers we have felt them both Kayelee and I. Kayelee has been so strong she shed her first tears tonight when they had to poke her again for more blood, she asked me to love on her while they did it and she dried them right up after they were done. Her little spirit is so sweet and she still sends a little spunk my way every once in a while and I love it. We love you and thanks again for your many, prayers, fasting, calls, concern, everything. We feel so blessed to have such an amazing family!!I hate to ask for one more thing but Lizzie came down with something today and is feeling pretty sick herself (nothing like Kayelee) but she has a fever and is throwing up she was feeling rotten tonight and Joe is trying to juggle all the other kids and work when he can so we hope her illness Is fast so maybe a few prayers her way would be good to so she doesn’t get worse and it makes things easier for her and Joe and the other kids. She has had kind of shock with this whole thing as I have never spent a night away from her and she is still nursing, so things are kind of tough for her right now too. I do have to say Joe has been absolutely amazing he has taken care of the other kids so well along with trying to get some work done. I asked him today if the kids have been keeping up with their homework and they haven't skipped a beat. He is such an amazing Daddy and husband. I can't imagine what my house looks like right now:) but my kids are being well taken care of I love being able to know that while I am here with Kayelee.Thank you guys again we love you so so much!!!! Joe, Deborah, Kyle, Kambree, Kayelee, Kapri, and Lizzie Brittlee Lou I don't mind you passing this on to others who are concerned and I am sure I missed people because it is late and I don't have everyone's e-mail addresses. Also if you are hearing about this for the first time I am sorry I wasn't specific on some things this was kind of an update as of today so I didn't include all of the past days happenings and details.
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