Lydia back in the hospital

Dear friends and family,
I want you to know how much we have appreciated all your concern and help over the past two years in behalf of Lydia and Brian and Janene. We need your prayers again.
We have been so happy because Lydia has been doing so well, but she has another bump to get over in her journey through life.
Last week Janene noticed blood in her stool. They cultured it and found the bacteria she is susceptible to in her GI tract. Treatment was to be simple, antibiotics from home. But by Friday, Janene expressed concern that she wasn't getting better, but seemed to be getting worse. Brian was deer hunting with his brothers in law and gone for the weekend so Janene went to stay with her sister in Springville. Lydia developed a fever and was very uncomfortable so Janene brought her home on Sunday and called the doctor Monday morning. They said to bring her down and she would be admitted. As Janene's Mom my heart ached as she cried, all the emotions were triggered from past experiences and she dreaded going back to the hospital. We all felt though that Lydia was going in much stronger this time and that with some hydration and antibiotics she would be back on the road in no time.
After examination, a scan was taken and a diagnosis of Post Transplant Lymphomaproliferarose (PTLD). Some patients after transplant may develop this if exposed to the Ebstien Bar virus. It affects the lymphocites and they start growing very fast. Lydia's liver, speen, and stomach were very inlarged and her platelettes very low because of the disorder. Because it can lead to lymphoma, they did a bone marrow on Wednesday. The preliminary results have shown no cancer, but they will treat her with chemo to prevent more progress of the disease hopefully keep her from developing cancer. Becasuse her immune system is so compromised becasue of the anti rejection meds she has been on, they have had to stop those to help her body to fight this new disease. It is a balancing act to fight this and to keep her body from rejecting her liver.
So once again Lydia is fighting for her life. We are at a loss for words, yet hopeful and we know she is in the Lord's hands. He has blessed her and her family in so many ways and we are grateful for His blessings. You all have been part of those many blessings and we are grateful to you.
Lynn and I are so happy to have Janene and Brian staying with us at this time. I have loved being close to them and having the children come upstairs to hang out with us and to get to see them each day. It's been wonderful to see Lydia learning so much every day. She is so proud that she can stand by herself now. She is a happy child always making us laugh. We love her so much it breaks our hearts to see her suffer some more.
I will try to keep you all posted on any updates we get. Janene and Brian have their hands full right now trying to get their house finished, and taking care of the kids. Although I'm sure you will hear from them sometimes too.

A Celebration of Gratitude!

Lydia turned two years old today.  As we celebrate the first two years of her life, we have much to reflect on and much to be grateful for. We wish to thank all of the family members, friends and strangers who have eased our burdens through your prayers of faith, selfless service and generous contributions in behalf of Lydia and our family.

As Lydia's liver disease worsened, our hearts were touched and our burdens lightened many times by the "angels" who prayed for and helped our family. Countless family members, friends, neighbors, and people we don't know reached out to support and strenghten our family, and many continue to do so.  We know that many, many prayers of faith have been offered for Lydia and our family.  We have felt these prayers sustaining and strenthening us through the grace of God during these difficult times.  Thank you for your prayers!! 

Many family members and ward members have helped us over and over again and continue to help us.   We have felt comforted knowing our children were in good hands with the loving people who tended them while we took Lydia to the hospital.  We have enjoyed many delicious meals that were prepared for us.  We have recieved much help working on our house that we bought with the intentions to fix up before Lydia was born. Thank you for your long hours of selfless service!!

At Christmas time last year, we recieved many anonymous gifts and donations of money. We were also told at Christmas time that a fund had been set up in Lydia's name at Zion's bank.  We were also invited to have Lydia be part of the amazing "Serve to Save" dinner put on by Vallley Elementary's 6th grade. The money that was so generously contributed to Lydia was a tremendous blessing to our family!  Not only did they help greatly with Lydia's extensive hospital bills, but they lifted our spirits as we felt the love and concern of countless people.

Now, at two years old and six months post-transplant, Lydia is doing great!  Despite her serious complications and extended hospital stay from her transplant, she has not been sick or had to be hospitalized since she was released from her transplant. Her blood draws and doctor appointments are getting farther and farther apart as her liver numbers get more normal. She is progressing well in her physical and speech development which was delayed from all of her sicknesses.  Yesterday I saw her take a few steps for the first time.  Yeah!  We feel very blessed and very grateful to be at this point of hope for Lydia. We know that our loving Heavenly Father saw our needs and sent us "angels" to ease our burdens during this trying time. You helped us immensely and our gratitude for you is overflowing. We wish to thank you dear angels from the bottom of our hearts!!!

With love,

Brian and Janene Christiansen

Back to School

Summer has come and gone in a flash for us.  School starts this week for Spencer, Alyssa and Dallin.  I'm not sure why they are starting so early since the school calendar doesn't show any extra time off mid year.  I wish we had another week or two before they started.  We went to back to school night on Wed. to meet their teachers.  They seem like they will be great teachers and we are hopeful for a great year.
Our family went to Bear Lake last weekend for a couple of days.  My sister Lorraine's family went also.  We stayed in a condo up there and had a fun little get-away.  We swam at the pool, played at the lake and hiked through Minnetonka Cave.  I had previously planned to keep Lydia away from the water because of her immunosuppression, but that wasn't very realistic as she saw all the fun and wanted to join in.  Gratefully she didn't get sick from it.  I am so pleasantly surprised that she has continued to stay well for this long.  I am very thankful that Heavenly Father has blessed her to be so healthy. 
Lydia had an appt. on Monday at the liver clinic and again passed with flying colors.  I didn't even feel any anxiety that we might have to stay this time.  It feels great to know she is feeling and doing great.  She is a very happy and fun little girl.  She is excited about life and the world around her.  It's amazing what a difference a healthy liver can make.  The only rough part about the week was a rough blood draw.  She needed to get an extra blood draw this week because her prograf (the main antirejection med) levels were too low.  Our favorite phlebotomist was out of town for this second draw and we sorely missed her.  It took two different phlebotomists and five pokes with lots of digging to find the veins to get the blood.  Poor Lyds!  She is a good sport though.  She was crying and saying "ouch"  through it, but when she was done she was all smiles again. 
Brian has been working very hard on our house.  His stamina amazes me.  He is there very late almost every night and all day on Saturdays and he gets up early every day to go to work.  I am so thankful for his hard work for us.  The demolition is almost all done and so is most of the electrical, sheetrocking and insulating.  We've had a fun time with family, but I miss our ward and friends down there.
p.s.  No pictures because I've given up on my crummy camera.  I asked for one for my birthday so we'll see what happens then.  Lorraine took some at Bear Lake that she said she will send me, so I will post those ones when I get them.

No news is good news

     Lydia has been doing so well that we are feeling that life is getting back to normal (ish).  She is now crawling quite often instead of just scooting on her bum.  She occasionally pulls herself up to standing.  She is saying more sounds that are her attempt at words.  She is swallowing more food and spitting it out less.  She is happy and spunky.  She knows what she wants and lets us know what it is one way or the other (points with grunts or throws a fit if she doesn't get it).  It is fun to watch her be so excited about life and see her strong personality now that she feels better.
     Our family moved up to live at my parents house for a couple of months while we re-do our home.  We intended to fix it up shortly after we moved in but it got put on hold as our "normal" life came to a screetching halt as we concentrated on Lydia's health.  My parents have been very gracious and hospitable.  My kids love being up here.  It kind-of feels like a long vacation. 
     Brian's been working hard most evenings and Saturday's to get our home done.  He's a hard worker!  I'm grateful for all that he does for our family.
     Spencer and Alyssa went on a week-long camping trip with some cousins from the Christiansen side.  They had a great time shooting bows and guns, swimming, hiking, doing  a service project and doing many other fun camping activities.  We were grateful that they were able to go since our vacation plan this year was zilch-o. 
     We are looking forward to enjoying many more healthy, happy summer days.

(Our camera takes terrible pictures so I don't know whether to include them or not, but here are some anyway.)

Tender Mercies

Yesterday was the three month anniverary of Lydia's liver transplant.  We have had such a huge tender mercy from Heavenly Father that she has stayed healthy enough to stay out of the hospital up to this point!  Now if she goes back in the hospital she will be covered under our regular insurance coverage instead of the 500K maximum allowed for her transplant and three months post-transplant.  With her transplant complications and extended hospital stay she neared the top of that maximum.  I really thought she would be in before now with how often she was admitted before the transplant and the rough go she had with her transplant.   
Thank you Dr. Book, Dr. Scaife, Corrinne and all of the excellent medical staff at Primary Children's Medical Center who have worked so hard for Lydia.  We are so grateful for your knowledge, your skills and your caring that you have given to heal our Lyds!!  We are especially thankful to our Heavenly Father for the countless blessings He has blessed Lydia and our family with!!!

Almost There

Our insurance problems are over with on July 8th. It has been hard to not take Lydia out places because of this fear of getting stuck with a large bill. It has been a blessing at how healthy she has been. That makes us want to take her out, but we don't want her to get sick and end up at the hospital. I dread the day she has to go back to the hospital. I know that she will have to some day. It is just the nature of the beast.
It has been a relief having the transplant done. I must say though that it still take a long time to care for her. It gets better and better each day. She is just starting to crawl. She has been scooting around funny for a while. This makes her able to entertain herself so much more. She loves to just scoot down the hall and go into the kids rooms to find fun things to play with.
We took her to church today for the first time since the transplant. It was so nice to finally be there all together as a family. I must say she was the nosiest kid in sacrament meeting.
The amount of doctor visits and medicine are slowly decreasing. We started therapy for her eating disorder. Hopefully we can really get down to business with the next visit. She chews up everything we give her. She still will only swallow water. We think that she is swallowing some things more and more but it is really hard to say with how much she spits up. One day she will get it down. Since everything that has happened to her seems to be slow I am just going to mentally deposit in my brain that this will take a long time also. It makes me less frustrated when I do that.

Happy girl

We took Lydia to see her grandpa's on Father's Day.  She really loves both of her grandpa's a lot.  She loves them to hold her and play with her.  I love to watch them interact with her.  She has mostly been homebound because of her immunosuppression, but we felt she was pretty safe on Sun. because one get-together was outside and there were no extra people at the other grandpa's.  In a couple of weeks she will be 3 months post-transplant which means we will be past our insurance transplant max so we won't have to worry so much about money if she gets hospitalized.  If she continues to do well, they will start weaning her immunosuppression meds about then also so we will feel somewhat safer taking her around others. 
We had another successful G.I. visit on Mon.  She cried less at her blood draw than in the previous weeks.  The phlebotomists were able to get the blood they needed in two pokes instead of three.  Dr. Book and the team were happy with how she is doing.  They needed to adjust her Prograf (anti-rejection med)  because that level was high.  They also changed her feeding schedule to try to get her hungry more so she will want to start drinking more than water and eventually learn to eat food.  It's been nice to have her disconnected from her food pack for chunks of time during the day so she can scoot around easier.  She is getting around faster and get frustrated when her food pack limits her range of motion.  She has been getting up on her hands and knees occasionally this week.  It is so exciting to see her get stronger and progress.
 I took her to Davis hospital last week to get her blood drawn.  I was nervous for this because we previously haven't had good experiences with blood labs other than PCMC for Lydia.  It went great though.  The phlebotomist was able to get all the blood with the first poke.  I will continue to take her there on the in-between weeks when she doesn't have an appointment down at PCMC.  This will be a big help to not have to go to S.L.C. each time.

It's been great to have the older kids home!  They have been great helplers with Lydia and other things.  Alyssa cleaned out the fridge for me the other day.  She volunteered to take Lydia on a walk this morning.  She seems happier to have a sister that she can play with and interact with more.  Spencer and Dallin also love to play with her and Lydia loves playing with all of them.