Tuesday, November 29, 2011

No news is good news

What a wonderful, hospital-free fall we have had!!  We feel pretty much back to normal with Lydia doing so well.  She is a smart, strong-willed, life-loving 3 year old.  Our family did get the flu last month,  but Lydia pulled through it without having to be hospitalized.  It was wonderful! 

With the celebration of the Thanksgiving holiday, I have thought a lot about the first couple of Thanksgivings of Lydia's life.  She was in the hospital for her first surgery (the Kasai procedure) for her first Thanksgiving.  That was the beginning of a long, arduous road for her and our family.  My heart was very heavy on that day.  I was grateful for kind and caring hospital workers and for loved ones (the Olsen's) who came to visit us.

On her second Thanksgiving, she was gratefully not in the hospital, though she had been several times thoughout the previous year and would often be following that day.  We spent the day with my family in beautiful Eden.  We had a delicious Thanksgiving breakfast at my mom's house.  We then went to the beach of Pineview Reservoir for a paper plate turkey shoot.  Following the turkey shoot, we went to the white church in Eden for a delightful Thanksgiving dinner.  That day was a day of healing and hope for me as we enjoyed regular conversation and fun with loved ones in the midst of turmoil in my life.  That day stands out to me as a great tender mercy which helped me through many more tough days ahead. 

I have so very much to be thankful for!  Even in my darkest hours, I knew I was loved and watched over by Heavenly Father and his angels.

Monday, August 15, 2011

I took Lyds to get her regularly scheduled labs two Tuesday's ago.  That afternoon Corinne called to give us some not-so-good results.  Her liver numbers were way out of whack.  One was reallly high and one was really low.  Because of the extreme and strange results, Dr. Book wanted a liver biopsy to try and figure out what was going on.  Brian and I took her down first thing on Wed. morning to get an ultrasound so they could find and mark the exact spot where they wanted to do the biopsy.  She was then scheduled for surgery at 2:30.  Because we had some time to kill in between, we took her to see the birdies at the .  She had lots of fun seeing the different birds.  She especially loved the colorful "peatocks".  When it was time to go back for the surgery she was her regular spunky, happy girl.  She cheerfully rode back to the O.R. in a wagon.  Brian held her until the sedation medicine kicked in.  The only time I saw her cry all day was for labs.  Brian went back to be with her first post-op and he said she was a little fussy, but not much at all compared to other times.  By the time I saw her post-op she was all smiles again about the orange popsicle she was eating.  They admitted her to the Rapid Treatment Unit for one night because of her age.  Because she wasn't feeling sick at all, she was quite happy the whole stay (except for labs, of coarse).  We relished the one-on-one time we had together reading stories, watching Barney and Elmo shows and playing the matching game and a My Little Pony game.  Dr. Book came in with results from the biopsy on Thurs. morning.  She said the biopsy looked much better than the initial labs did and even the latest labs were looking much better.  She thinks that her liver may have been just starting to reject a little bit, but that they should be able to get the liver numbers back on track with the med adjustments.  She increased her steroids a lot and her Prograf (the main anti-rejection med).   We came home Thurs. afternoon.  The high-dose steroids make her very hungry, hyper and more cranky than she usually is.  Gratefully, she is in excellent hands down there at PCMC and she is being watched over and blessed by Heavenly Father.

Sunday, July 3, 2011

Another Big Milestone

Lyd's is officially done with her feeding tube.  Yipee!!  She has been consistenly drinking enough fluid this past week and will take all of her meds by mouth.  She makes a disgusted face everytime with one of the meds, but she'll do it with some chocolate bribery and a desire to not have the tube put back in her nose.  Yeah, another big milestone behind us!  It has been so great to have her feeling so well for so long.  She has such a fun, dynamic personality.  She teases, and laughs, and yells, and talks loud in church and gets into plenty of two-year-old mischief.  She brings much joy to everyone that she is with.  I am so very grateful that she is a fighter and that she has been blessed to be healed so well through knowledable doctors and nurses and through Heavenly Father's immense blessings!

After struggling so much with the pain she has endured (like I talked about in my last blog post), I learned a great lesson from the spirit.  I had been struggling for a long time with trying to understand why Lydia had to suffer so much, especially since she was a baby who didn't know why she had to suffer and hurt so much and why me and Brian would allow her to be poked and hurt so much.  As I was thinking about this and reading in the Book of Mormon,  I read about a people that were very blessed and prospered, then Heavenly Father gave them trials that they could grow.  As I thought about this the spirit told me that Heavenly Father loves each of us very much and sends us to earth and gives us trials and sickness and pain for our good and so that we can grow.  The spirit witnessed to me that Heavenly Father loves Lydia and has a purpose for her, part of which includes her pain and suffering.  This was a very comforting and healing lesson to me.  I am very grateful for Heavenly Father's plan for us.

Tuesday, May 31, 2011

Hotel Primary's

May started out with a bout of sickness which worked its way through our kiddos until it landed Lydia with a stay at "hotel PCMC".  There were various combinations of throwing up, diarrhea and fevers running through the crew.  Lyds ended up with a bad case of diarrhea and some occasional vomitting.  As a result she became quite dehydrated and her blood sugar levels plummeted.  She was admitted the Wed. before Mother's Day and made for a very happy Mother's Day by being released that day.  She was diagnosed with Rotovirus, which almost everyone gets at some time, but her little immunosuppressed body wasn't ready to fight it on it's own yet.  Gratefully we had Dr. Book and Corinne and all the medical workers who were on top of things to help her get her better quickly.  Most especially, we are grateful that Heavenly Father has blessed her with so much good health and healing. 
It was a relatively happy stay for Lyds as she quickly got feeling better with the I.V. fluids.  She enjoyed crusin' the halls of the IMCU in the little red car, playing in the play room and watching Barney.  I, on the other hand, didn't cope so well as I cried with her while she was getting her second I.V..  Her blood draw before she was admitted had been torturous because it was hard to get enough blood with her being so dehydrated.  Then, to have two I.V.'s and numerous fingerpokes to check blood sugar levels did me in.  Not that she hasn't had much worse, because she certainly has, but my anxiety skyrocketed again not knowing how long she would be there and how much more she would have to hurt.  I get so tired of her hurting and hearing her plead through her tears for "no more owies".  At least now she is able to well enough to cry hard and old enough to voice that she doesn't want any more.  It was much harder to see her too sick to care and too young to tell us her feelings.  O.k., my pity-party is done(at least until she hurts again).
She and the rest of the crew quickly recovered and returned to their happy, fun little selves.  How blessed Brian and I are to have them!  I am looking forward to a great summer with them!

Wednesday, March 30, 2011

Picc gone and Chemo done!

Lydia had a ct scan on Thurs. and a full blood lab work up to determine if her PTLD was gone.  She showed no traces of it so she is officially done with Chemo.  Yeah!!  Scott, her home health-care nurse pulled out her Picc-line on Friday.  She loves bathing with both arms in the tub now and free reign to splash and play.  It was very exciting to get rid of the Picc (until she had to get stuck for labs today).  But, we'll definitely take the pokes over the risks and implications associated with the Picc.  We feel very blessed that she did so well with the Chemo and didn't have to be hospitalized for illness during that time.  She is a tough cookie!
Spencer turned twelve on Sunday.  Ohhh, that means me and Brian are getting old.  Spencer recieved the Aaronic priesthood on Sunday as well.  It was a very special day.  He had been looking forward to it for a long time.  He has been very responsible and helpful lately.  We have him tend for us often and he takes especially good care of Lydia.  She loves him lots and loves to play with him.  He is very cute with her.  Spencer has a good sense of humor and is fun to be with.  He has been extra responsible with his school work this year which has helped me a lot.  He loves to go hunting, fishing, play basketball and make things (including Lego ships still).  His buddy Ryan fortunately enjoys the same things so they have a great time together.  I am very grateful for my Spencer and love him very much!

Thursday, March 10, 2011

Done with Chemo!

Lydia had her last chemo treatment on Thursday, Feb. 24th.  Yipee!  She will get an extensive blood draw and a cat scan in a couple of weeks to make sure there are no traces of PTLD left.  We have been very blessed that she has done so well with her Chemotherapy.  I'd say losing her curls is a pretty small price to pay.  I'm so grateful that she didn't get nausea or have to be hospitalized over the past five months.  She is a vibrant, full-fledged two year old doing getting into all sorts of two year old mischeif.  I love it!
Dallin was baptized on Saturday.  I felt a special spirit as throughout the week while I was making preparations for it and especially on Saturday.  I know he was doing what Heavenly Father wanted him to do and that he will be blessed for it.  He was extra helpful throughout the week.  He cleaned his and Lydia's rooms really well and said he would clean the whole house, but didn't quite get to it.  He has been very happy and helpful the past few months.  He loves to work on projects with Brian.  He is very goal oriented and organized.  All of the kids loves to play with him.  I can't remember when the last time was that he had and angry tantrum like he used to have.  He is doing fantastic in school.  He excitedly tells me many details of the things he is learning in history.  Many of his subject requirements he has mastered according to his teacher.  At his last parent teacher conference, she couldn't think of goals that he could work on so she asked him if he would like to do a report just to have something challenging to do.  He chose to do one on the Minutemen.  I love my Dallin!

Alyssa turned 10 in January.  Wow, she's growing up.  She has been talking about boys lately.  She loves to read, read, read and "play" school in her free time.  I think the past couple of years have been especially hard on her.   Because she is by nature so pleasant and a peacemaker instead of being a "squeaky wheel",  I think her needs and desires have often been put on the back burner.  I joined a mother/daughter book club with her in hopes to give her a little more of the attention that she needs.  She is such a sweet, good girl.  She is so cooperative and helpful.  I hope that we can do better at meeting her needs.  She got glasses a couple of weeks ago.  I think she looks very cute on her.   I love her very much!

Friday, January 14, 2011

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.

Sunday, January 2, 2011

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.

chillin' and grubbin'

Spenc and Lydia enjoying some brocolli (at least the taste of it for Lydia since she just sucks out the flavor and spits it out)