She's home and happy!

 

Lydia was released from the hospital on Tuesday.  She was so happy to come home and was feeling much better than when she went in.  She went back in for an outpatient infusion of antibodies on Friday.  She will go two times a week for infusions of meds or chemo for at least the next few weeks.  So far she seems to be handling the chemo quite well.  She seems somewhat subdued some days, but has had no other apparent side effects.  She could still have other reactions with future doses, so for her next infusion of the main chemo they will admit her for one night to make sure she handles it ok.  There is a possibility that she could lose some or all of her hair, but it's a smaller chance since it's a low dose chemo.  I love her curly hair, so I'm really hoping she doesn't. 

Thank you all very much for your love, prayers and support!  It really helps us get through the rainy days.   

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.

Lydia is continuing to do great!  She had a swallow test last week to see if she was still aspirating into her lungs.  She passed with flying colors.  Yeah!!  She is now free to have all the water that she wants.  We will start having early intervention come to teach her how to eat.  Her GI clinic visits are now every two weeks instead of every week. 

She gave us a little scare last week.  Brian was supporting her back as she was standing up to the coffee table.  Her legs gave way suddenly and she fell with one leg bent underneath her.  She cried hard for a while and woke up a couple of times in the night crying with pain.  In the morning, she cried if her leg was moved a certain way.  I was afraid she broke it or dislocated her hip.  I took her to get x-rays.  Gratefully it wasn't broken and has continued to get better over the past few days. 

Lydia loves to play with the kids, take walks in the stroller outside, watch the kids play outside, play in the tub and scoot around the house on her bum.  One day the kids were pulling her around the trampoline on a blanket.  She loved it and the have since pulled her around the house on a blanket.  She laughs and smiles almost all the time.  We're so happy that she is feeling so much better and that she is so happy. 

Fun at the Zoo

Lydia's Uncle Aaron and aunt Lyndee tended her on Friday evening while the rest of our family went to the zoo for "dreamnight".  When Lydia was in the hospital for her transplant, Primary Children's gave us tickets for this fun evening.  There was dinner, facepainting, kids zoo packets and mascots along with all the great animals to see.  We got a flat tire on the way, but Brian was quick to remedy this and taught the kids about tire changing.  He's a great teacher to them.  We all had a great time at the zoo.  It was kind of a trial run to see how Lydia would do with others.  Brian's work has a Lagoon day coming up at the end of the month that we are looking forward to and we wanted to leave her with someone.  She had been tended by both grandma's earlier in the week and did great, but she's used to them.  She surprisingly did great with Aaron and Lyndee too.  This means we can leave her more with others.

BYE BYE PIC-LINE

Our friend Nancy (home healthcare nurse) came and pulled Lydia's pic-line today (under Dr. Books orders, of coarse).  Lydia's anti-rejection meds have been stable enough to move to once a week labs instead of twice a week.  As much as I hate having her get poked for blood draws, I hate having her in the hospital for infection worse.  The pic-line is a source for risk of infection so we are happy it's gone, especially now that we have been out of the hospital for three full weeks tomorrow.  Lydia will also be glad to get to put her arm down into the bath water.  As soon as her incision wound is healed enough, she will be able to have a full-blown fun, splashy bath.  Her voice is getting much stronger and her oxygen levels have been much better so hopefully this means her lungs are continuing to heal.  She will have another swallow study test next week to see if she doesn't aspirate any more.  We have gotten several good blood pressures so the doctors have started to wean two of the blood pressure meds.  She seems to be doing great!
Spencer, Alyssa and Dallin have their last day of school tomorrow.  Me, Parker and Lydia will really enjoy having them home for the summer.  It will be more people for Parker and Lydia to play with, more help for me and less worrying about germs brought home from school (another big source for possible infection).  Welcome summer!!

Lydia "passed" both of her appointments this week with flying colors.  The nurse at the kidney clinic was able to get a good blood pressure so the doctor started to wean one of the blood pressure meds.   I felt a little anxious on Tues. that her blood labs or something else might show something that would keep her there.  I felt relieved when we were driving home.  Lydia was happy to go home also.  For as much anxiety as I get about being there, she must have much more (and rightfully so)!  She was instantly unhappy when the medical people would touch her.    Dr. Book said  she was doing great compared to where she was a few weeks ago.  The wound from her incision is continuing to heal, her voice is getting stronger and her liver enzymes are getting closer to normal.   Yeah,  keep healing Lyds!  You are a fighter and a winner!!

8 Days Home - Yeah!!

It has felt fantastic to be home together for over a week.  The kids had fun dressing up in Alyssa'a dress-ups today.  Lydia's throwing up drastically decreased every day since Wednesday.  She didn't throw up at all today.  She also took a longer nap today than 20 minutes. Yeah!  Spencer, Alyssa, Dallin and Parker are very good sports about not getting as much of our time because of the time that Lydia requires.  They love her very much and are good helpers with her.  I am so blessed to have such great children!  I have worried a lot about not meeting all of their needs during the past year and a half.  Hopefully in the time ahead I will be able to work on and strengthen my relationship with each of them.  Tomorrow Lydia has an appt. with the kidney doctor, then a G.I. clinic visit on Tues.  Hopefully after that we'll be able to just hunker down at home again for several days.  Her immunosuppression meds are really high right now so we're keeping her home and away from germies as much as possible until they can wean those meds more.

Too happy to nap

It has been wonderful to be home doing the "regular" home things the past couple of days.  Our colds are on the mend and we seem to be getting back in the groove family life at the Christiansen home.  I have loved being able to do chores with Parker and read stories to him.  I have loved being able to listen to how the kids day was at school and be with them for the evenings.  I have loved chit-chatting with Brian on the phone at lunch time, getting a welcome-home-from-work kiss and enjoying excellent foot and back rubs from him.  I have loved watching the kids play with Lydia and make her laugh.  I think she is having so much fun here that she doesn't want to take naps.  She napped for about 20 min. yesterday and today, but at least she is sleeping good at night.  She had a rough throw-up day yesterday.  We had tried switching her to a different formula and she threw up continuously causing her to get dehydrated.  I thought we'd be spending the night at PCMC last night, but gratefully her Dr. Book and the nurse gave us a good plan for trying to rehydrate her at home.  It seems to have worked.  She has had a much better day today.  Yeah for being home!  

Looking Good

Well it has been an interesting weekend. Lydia has been doing great. The rest of the family have been going through colds. Janene didn't feel good yesterday. We are all on the mend today with slight traces of it left. We have been praying that Lydia doesn't get it.

Janene took Lydia in for her checkup today. They think that Lydia is doing good. We have had a real hard time getting a good blood pressure machine that works for her. The doctors tried a bunch of times and couldn't get a good reading today either. She didn't like being back to see the doctors. She threw up twice there because she was mad at them taking her blood pressure. The doctors decided to just not worry about us trying to take her blood pressure at home. That is wonderful because she hates it and it is one less thing for us to do.

She still takes quite a bit of time to take care of. Hopefully that will change as the number of medicines goes down. We are down from 17 to 15 medicines now. She has a bad case of diarrea. It doesn't help that almost every medicine she is taking can cause diarrea. This has made her bottom really sore. That has been the worst thing that Lydia has dealt with since she has been home.

She wasn't very sure of sleeping in her bed the first night. She has warmed up to it now. She likes to sit up and play on the carpet with her toys. She gets tired of sitting up. I can't blame her since her abdominal muscles are week. We lay her down and she roles over and scoots around.

She has been happy and laughs a lot. The kids will do silly things and she will laugh at them.
We are glad to have her home. She gets stronger and stronger each day.

HOME!!!

I don't know that I can quite put into words my feelings of yesterday, but here's a try.  It was a very special day.  I'll mention a few highlights.  Lydia woke up free of fevers and happy so this meant she could come home.
Dr. Book, who is Lydia's liver doctor, paid us a farewell visit.  We briefly talked about the long, scary road Lydia has had over the past five weeks and we shed some tears together.  My heart was full as I thanked her for what she has done for Lydia.  I am so grateful for the great well of knowledge that she has.  I feel very blessed that she is Lydia's doctor.

Lydia came home with 17 meds, an NG feeding tube, wound care supplies, oxygen and a blood pressure machine.  I am very grateful for the GI team working so hard to make it so she could come home with these things and not have to wait until she was less complicated.  They worked hard to simplify her care at home and make it as cost effective as possible for us.  They have really gone the extra-mile for Lydia and our family.  

Lydia's face lit up when she saw my mom and Parker who came to pick us up.  She was cheerful as she experienced a lot of "firsts" (in 5 weeks).  My mom got her dressed, I carried her down to the first floor where she got to see the fishies that she loves, I carried outside and put her in her carseat in the car, she came into our house and got lots of loves from the kids, she sat on the carpet and in the highchair and played with her toys.  The only thing she seemed really unhappy about was going to sleep in her bed.  She just wanted to keep playing.

As we turned up our road, I was overcome with emotion as I saw the yellow balloons dotting the street and many balloons and yellow ribbons decorating our house and yard.  Thank you dear friends for sharing in our excitement with such a loving welcome for Lydia.  I feel like she doesn't just belong to us, but to all of you who love her so much.  She has worked her way into many hearts.

Lydia and I walked into a spotless home (thank you Mom, Brian and kids), we enjoyed a delicious dinner together (thank you Nelson's) and we revelled in being back together as a family for the evening.