The big day!

Yesterday was Lyd's big day down at Primary's.  It started with a GI visit in which they said all is well except they want her gaining more weight.  I'm not sure why, so I need to ask more about it.  Next we headed to oncology which took longer than expected because they didn't have the lab results they needed to order the chemo.  She did great with the chemo again.  Finally we went to the orthopedics.  (I told my mom we're probably near the top of the list for going to all the different clinics and areas of the hospital between Dallin, Parker and Lydia.)  I was anxious about the orthopedics because I didn't know how they would cast her arm with us still being able to change her picc line dressing.  I thought for sure we would be heading back down today to get her line moved.  The oncologist suggested recasting every couple of weeks.  The orthopedic had an even better solution.  She took off the first brace, I changed the dressing, then she put on a new brace.  We will go down to do that every couple of weeks.  I was so excited because her veins are pretty shot and so I didn't want to change the picc.  I am thankful for yet another wonderful tender mercy.

A New Year!

Merry Christmas and Happy New Year (late)!  We hope all of you have enjoyed happy times with relatives and rejoiced as we have in celebrating the birth of our Savior.  As we reflect on this past year, we are very grateful for the knowledge of the gospel of Jesus Christ, which has carried us through our challenges.  We thoroughly enjoyed time with family during the holidays.

Lydia has handled the chemo treatments really well.  She hasn't had seemed to have nausea or any other rough side effects for which we are so grateful.  Her has has thinned and become quite coarse and lost the curl.  Janene cut it because it was sparse and getting so matted, but happily she still has quite a bit.  We started out going to Primary's twice a week, then after a couple of months it went down to once a week.  Now, at her last visit, they said she only needs to go down once every 21 days.  Yeah!!   

However, we don't get such a break from the hospital quite yet because yesterday Lydia broke her arm that has the picc-line in it.  She fell off of the rocking chair and landed on that arm.  She broke both the Ulna and Radius bones about an inch below the picc site.  Gratefully the breaks were clean and they didn't have to set them.  The orthopedic said they would heal well.  They put a brace on it for now then we will go back in a week and a half to get a cast on it.  We are not sure yet if the picc can stay there in that arm.  The orthopedic said they can cut a hole in the cast to access the line, but  because of needing to change the dressing weekly, it may need to be moved.  Lydia was again a very good sport.  She cried hard when it first happened then it subsided to only when her arm was moved.  She is such a toughy.  Alyssa cried for her and was worried for her.  She is very caring and empathetic. 

 

















 All in all, Lydia is a happy child.  She is so different from what she used to be.  She seems to really enjoy and appreciate life when she's feeling good.  She loves her brothers and sister, and they love her.  They are able to play with each other well.  She still prefers Janene and me to change her diapers.  That’s too bad.  Hopefully one day she will let the others help in that messy chore(hee, hee).

Lydia finally decided that she could walk (before she broke her arm; now her bandage is too heavy).  She was walking alot during the past month.  She had been taking a few steps here and there before that but then she was almost always walking.  Two weeks ago she watched her cousin go up and down the stairs on her belly.  The next day she decided that she could do that also and mastered it fast.  She helped herself right down the stairs to the toys. We feel like we missed the stage where you have to put a gate at the top of the stairs.  She also has decided to really eat.  She still has the NG tube.  We use that for medicines and for the extra fluids that she isn’t consuming yet.  She is consuming more and more food and liquids daily.  We hope that we can pull the tube someday soon. 

We moved back into our home on Dec 10.  The remodeling project was more than we expected.  When do they ever turn out otherwise!  We have been blessed greatly by our families and so many others in helping us get our remodel done.  It is so nice to go into a house and have it feel clean and new.  That is important to our sanity because of the need to have a clean area for an immuno- suppressed child.  It has been wonderful to be back in our home and enjoy more time together as a family.

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.)