A Battle to be Won

2013 has been a rough year for J's side of the family.  In the beginning of the year, his cousin was killed in the avalanche while snowmobiling.  Since then, he has had two uncles come down with bone cancer (they live in different cities...one is an uncle by marriage, the other biological) within weeks of each other.  What are the odds?

The week of Halloween, we had another blow.  Our niece, Kynlee, was diagnosed with type ALL leukemia.  She will be three years old in December.  What makes it even harder for the family is the fact that J had an aunt who died in her teenage years of the same type of leukemia.  J's mom is having to watch her granddaughter go through the same thing her sister did.  Thankfully, there is now an 85-95% success rate with treatment.  Unfortunately, the treatment is for three and a half years.

It will be a long road for Kynlee.  She has one more week left on the steroid treatments, which have caused her to gain over ten pounds and are associated with a "rage."  The last three weeks have been an adjustment for all, especially since they live down in central Utah and have had to go up to Primary Children's several times a week for chemo.  She has been coping well with the treatments thus far.

Zuri has been very concerned for her cousin.  She will randomly get sad and say she is worried about Kynlee.  When she has seen Kynlee, Zuri was very sweet and will try to help Kynlee any way she can.  I am used to seeing the nurturing side of Zuri with Kai, but it was doubly sweet to see that side come out with Kynlee.  




This was taken while she was resting right before she had a central line put in, a lumbar puncture, bone marrow aspirate and her first treatment of chemo.


This was taken earlier this week.  

Maria has talked about starting a blog.  If she does, I will post the link for those who would like to keep up with Kynlee.

As for us, the news has been hard.  We empathize with what his sister's family is going through.  To have a healthy child turn ill so suddenly would be devastating.  No matter what the situation, there is a period of mourning for the child.  The prognosis is encouraging, but the next three years will be rough.

I wish there was more we could do to help.

Kai's OT has been battling cancer for years now.  It finally took her down a couple months ago.  This week she was allowed to come back to work.  When talking about everything that has happened, she kept saying, "but God is good." ...  "God is great."  This woman who has been through so much has such an enthusiasm and appreciation for God and life.  She is an inspiration to me, especially since she has had a hard year.  She spent most of her summer flying back and forth to China as her mother's health worsened and she passed away.  Then her brother also became seriously ill, and she has had to help care for him on a ventilator.  To then battle her own illness and still come out with such a positive attitude...my admiration for her just keeps increasing. 

I have found through my own trials that there are two ways to look at what is happening.  It can be easy to fall into the "why me?" category, and wallow in self-pity and all that has happened.  What does that accomplish, though?  A better way is to see all that we have--all the blessings that have been given along the way.

With Kai, it was hard at first to see all the healthy, "typical" babies hitting their milestones and know that will never be him.  I have developed a different perspective now.  I celebrate all his accomplishments--from rolling to his side, to playing with his ballard, even to laughing over his trach so that we can hear his giggle.  He has an amazing spirit, and is such a happy child.  I have met so many wonderful and inspirational people through Kai.  This experience has not been easy, but I can tell you, it has been worth it.

I hope that Maria and Nolan are also able to find the blessings and the joy that can come from this very difficult experience with Kynlee.  It is something that no one, let alone a child, should have to go through.  However, reality is what it is.  I hope they know how loved they are, and that they are not alone.

There is a reason that the phrase is "battling cancer."  It is a fight to get through, and our little Kynlee is a fighter.  It is a battle to be fought...and a battle to be won.  She won't be by herself;  we will all be there with her.

Just Because it's Calm...

In the world of special needs, even when things are "calm" on the surface, there is always something going on below.  At our last trach/vent clinic we decided to get some labs done on Kai.  We were specifically checking his vitamin D levels and bone density.  His vitamin D levels came out normal.  His bone density came out as that of a seven to eight year old.  At our last check, his bone age was only a few weeks ahead of his actual age.

At two-and-a-half, to have the bone age of a seven to eight year old is quite a jump from a few weeks.  I haven't checked with fellow MSS families to see if this is normal for the syndrome.  I do know advanced bone aging is part of the syndrome. However, I don't know if the bone aging continues to rapidly advance ahead of actual age.

What this means for Kai is an increased chance of osteoporosis, non-stress related fractures, brittle bones, and all the fun things that are associated with older bones.  Kai will also most likely be short in stature due to bone maturity; so even though he is a big kid now, he may reach his maximum height at ten (or younger/older--I am just throwing in a random age). 

Kai also smells like an adolescent boy.  That is, he has very definitive BO, plus some hair in his nether region.  He is a hairy kid all around, so we are doing more labs to check to see if he is going through puberty early, or if it is just him being stinky and hairy.  From the labs so far, he is just stinky and hairy.  Just to be certain we are going to run a few more tests.

Another recent development is the back brace.  Kai has developed mild scoliosis (a small hump on one shoulder), and to correct it we have to put him in a brace.  When we were talking to the doctor about it, I thought it would be soft, but this is a hard plastic.  Honestly, I feel awful putting Kai into such a stiff contraption.  He is supposed to wear it between 6 and 12 hours a day.  That is a really long time for a kid to be practically immobile.  Although it may seem like Kai doesn't move much, he really does wiggle himself around quite a bit.

Kai hated the brace at the clinic.  When we brought him home and put him in it, he was actually quite content, although when we took it off, he was all wiggles and coos.  So maybe this awful looking device won't be so bad... I hope not.  We have to be really careful not to irritate Kai's skin, he has to wear a shirt with it, and we have to rotate it on/off every few hours.

Going through all this really gives me an appreciation for what our bodies tend to do naturally.  Who would have thought that something as simple as sitting and standing have such an impact on our skeletal structure?

Not Just for Kids

The trampoline is oh-so fun.  Zuri convinced Shin and J to jump with her.  They had so much fun that they even did tricks!





They both made it completely around to their feet.  :-)

Halloween 2013

Zuri's dance class had a Halloween party on Wednesday.  They had the dancers dress up in their Halloween costumes and they each brought in a treat to share.  I finally found the picture for the complete kimono costume, and I was able to put it together for her dance class!  Ta-da!  The ribbon and bow in the front really completes the kimono, and now I know exactly how to assemble it.

Zuri's school had a Halloween parade where the kids wore their costumes and paraded around the school.  Parents are welcome to come see the kids.  I had it all planned with nursing so that I could go see Zuri in her parade, but the morning nurse called in sick so I was unable to go.  She sure looked cute, though (she insisted on the tiara--she said that she wanted to be a Japanese princess)!



Making silly faces

After school, Zuri was eager to get out of the kimono.  I told her that she needed to keep it on all day because she was going trick-or-treating at Primary Children's and then in our neighborhood later that night.  She started to get really whiny, complaining that she was hot, that her sleeves were too long, the skirt too poofy, etc.  I knew we didn't have much time before Alisia came (she was taking Zuri up to Primary Children's; they have a haunted hallway that they do for the kids--so neat) and I finally gave in--I quickly changed her into this Parisian Princess costume (I had hoped to save that for next year).  We were able to get three events in the kimono, so I call that a success (the trunk-or-treat, her dance class, and her school parade). 

She was excited for the new costume and insisted that I take a bunch of pictures with her posing.  All these poses (plus a few I didn't include) were her idea.  After getting the pictures, Alisia called to say she was running behind, so I had time to iron her dress (I wish I had done that before the pictures, but oh well).






After trick-or-treating at Primary Children's, Alisia brought Zuri and Addilyn and Emery back to our house for dinner and to go trick-or-treating in our neighborhood.  J was stuck in traffic, so while we were waiting for him to get home we took some pictures of the kids.

It is hard to tell from the picture, but Kai is also dressed up in a Japanese outfit.  Addilyn and Emery are the Croods.  I was disappointed not to get Zuri and Kai together in their Japanese costumes, but that will just have to be a project for another day.

We didn't take Kai trick-or-treating this year (it was colder and since we had a nurse we decided to keep him inside where it was warm).  The nurse was on candy duty for us (so grateful she was willing to do it), and the kids wore themselves out running through the neighborhood.


I wanted to get a picture of Zuri and Kai together.  I put him on her lap, but she made the decision to put her hand on his head for the picture (it is more off to the side in this shot).  She kept giving him hugs.  It is always so heartwarming to see her love for her brother.

The trick-or-treaters ready to go!

There was one house that we went to where the treat was a can of soda.  The kids were so ecstatic to get soda.  I caught this priceless photo of Emery as he turned to tell us what they were getting. 



The loot.  This is Zuri's candy from the trunk-or-treat, Primary Children's haunted hallway, and neighborhood trick-or-treating.  Almost three full buckets.  Holy cow.  I think she has enough candy to last the next two years!

Raking Leaves

It's that time of year again--time for the leaves to change color and fall.  We had a fairly cold October, so the leaves didn't change much before they fell.  Well, at least the ones in the front yard.  Our fruit trees have turned some brilliant shades of yellow and red before they fell.  It is all just beautiful.

With all the trees we have, it also means lots and lots of leaves.  We rake and just a few hours later more leaves will fall and it will look as though we haven't raked at all.  Makes for lots of fun for Zuri!

Trunk-or-Treat 2013

For Christmas, Kimie sent Zuri a cute kimono.  I thought it would be a great costume for Halloween this year, but it is very complicated.  It came with instructions (all in Japanese) and there were some extras pieces that I couldn't place (they weren't included in the picture part of the instructions).  Kimie sent me a photo but I couldn't find it in time for the trunk-or-treat (I did for Halloween--you will see the full costume in that post), so I took my best guess.  I think I did pretty well.  I really just misplaced the bow and the green string.

Our ward had the trunk-or-treat/carnival the weekend before Halloween, and it was a hit.  Right after the kids get their candy, they head inside for games.  I haven't been in a ward which has a carnival afterwards, but I think it is a wonderful idea. 



So excited about her candy!
At the carnival





I didn't realize what a good arm Zuri has.  The game is to throw the bean bag through the hole which the kid's face is in.  Zuri hit three out of three.  That's my girl!

She got the doughnut!  It was fun to watch her try to get it without using her hands.

homemade cotton candy, yum!

Scarecrow Festival

A couple weeks ago Zuri's school sent home a flyer about the 22nd Annual Scarecrow Festival--and the best thing about it--admission was free!  So, I rounded up Amanda (my sister-in-law) and her toddler, Jaxson, and we went.  Unfortunately, the activities are more geared toward elementary school aged children, so there wasn't much for Jaxson to do, but we had fun hanging out together. 



Zuri had a blast.  She went in the bouncy houses (Jaxson briefly jumped in one), explored the big pumpkin, and for a dollar, she made a rocket and got to launch it.  That was her favorite activity, and would have kept it up all day if she could.  It started to get cold, so we ended up going home earlier than anticipated.

Retrieving her rocket.  Once you pay your dollar for the rocket, you can shoot it off as many times as you like.  If your rocket gets lost or damaged, you can make a new one for free.  It was really quite cool.

Kai enjoyed the time out as well.



Back home.  Amanda holding Kai

It was a two day event, and we had some respite hours on Saturday, so we took Zuri back.  We had lunch at Firehouse Subs first, where she got her nifty Fireman's hat. 


She loved the steep slide.  I think she went down it a good five times before the line started getting really long and we moved on to the next activity.  Along with the slides, bouncy houses, and rocket launchers were games, pumpkin patches/mazes, bungee jumping, a tower of terror, and so much more.  Many of the activities had a height requirement and Zuri was just slightly too short, but she had so much fun with the activities she could do that she didn't even notice.


Once again, her favorite activity of the day was the rocket launcher.  She was really good at tracking her rocket while running to get it.  We are talking about the rocket going at least 100-150 feet in the air.