Update on Dayne

What I wouldn't give to be in Baltimore right now hugging my little brother.  I have cried more than I want to admit the last two days.  This is the first time I have not been there for Dayne when he woke from surgery.

First of all thank you to everyone who has purchased a "Unbreakable Spirit" necklace.  If you still would like to purchase one they are available on the left hand side of this blog.  Thanks also to anyone who kept Dayne or any member of our family in your thoughts and prayers.  Daynes fight is lifelong and never ending but he is tough.  However, no matter how tough one is, they have bad days and hard times.  This is Daynes "bad day".

Daynes surgery was successful.  That is the good news.  My cute mom is a Registered Nurse.  She and Dayne were both so nervous for the surgery that the doctors let her scrub and go back into the Operating Room and hold his hand until he fell asleep.  She has been his biggest support.  She gave the doctors instructions on how to lay him so that he was most comfortable and cried a little when she asked them to take good care of her baby.  She and Dayne have such a good relationship.

So the goal for this surgery as mentioned before in a previous post was to replace the steel rod that was protruding through his bone.  The rod was replaced and the doctors did some bone grafting using medical cement and bone from his hip.  They also took a piece of bone for a bone biopsy that will hopefully give them some ideas on how to help him more.  This part went well.
The other part of this surgery was to get Dayne to be able to stand up again.  This will not be accomplished over night.  Also mentioned before, Dayne walked until he was five.  After that he was so fragile that even sitting in his wheelchair he would have a spontaneous fracture in his leg or arm.   Well, sitting in his wheelchair for the last eleven years, along with his fractures and other injuries made it so that his tendons in the backs of his knees tightened and locked him in a sitting position.  This made it incredibly hard for him to get comfortable even in his bed at night.

This picture shows you how straight his legs are.  So, while in the operating room the surgeon placed something (Im not sure exactly what it was) in the growth plates behind his knees that would help his legs straighten as he grows.  Not only that, they physically straightened his legs and placed braces on them.  So they are now almost straight.  My mom says this is what is causing Dayne the most discomfort and pain.  He wants the braces off.  I cannot imagine how that must feel. 

So once Dayne recovers from this surgery he will start a rigorous physical therapy program in Baltimore.  The therapy is projected to last three months and will help him gain the strength to be able to transfer himself unassisted, (hopefully) bear weight on his legs, and maybe even STAND!!! This would be so great for him!  It is my understanding that they will also be starting Dayne on some new experimental medications.  So please please continue to keep him in your thoughts and prayers!  He needs all the love and encouragement he can get!

Again, Thank you, thank you for all your support.  

-Daynes big sis, Brittani

#nevergiveup

Daynes journey has officially begun.  He just called me from Baltimore to tell me that he made it safe.


This morning I called him at his home in Utah to tell him that I loved him and wish him luck, when I was done talking to him I handed the phone to Nick (my husband) so he could talk to him for a second.  As they were hanging up Nick said "well, alright I love you man!" and Dayne responded with "Love you too, take care of those girls for me".  I love it!  He also let me know that the plane ride didn't go too well because he was so nervous and nauseated.

(Here he is on the plane before heading to Baltimore.)

As you can see in this picture, Dayne's back has an extreme curve in it.  This is part of the progression of his disease.  His bones are so soft that they are curling.  He is unable to sit upright.  His curvature in his spine has gotten so bad that his abdomen or stomach is actually resting on his thighs.  So if you have ever ridden on an airplane, you know how uncomfortable those seats are already.  Now imagine what it would be like if you were too short to have your feet touch the floor, and you were unable to sit upright.  Pretty miserable.  

Two years ago I was able to go with Dayne on his trip to Hong Kong for his wish from the Make A Wish Foundation.  His wish was to have a karate lesson from Jackie Chan.  And he got it!  Jackie Chan was one of the kindest people I have ever met.  He paid so much attention to Dayne.  It was awesome. 

This plane ride from Salt Lake City, with all of our connecting flights was about a total of 21 hours.  By the time we landed in Hong Kong Daynes lower legs were so swollen they had doubled in size, he wasn't able to sit back once, and yet he NEVER complained.  When we got to Jackie Chans office (huge building) he was more than prepared for us.  He was doing an interview for Forbes magazine when we arrived so we sat and watched for a little while.  Then he took us to a room with snacks and a movie to occupy us while we waited for him to finish his interview.  Once he was done he took us to a warehouse where he keeps all his product.  Did you know Jackie Chan has a clothing line and all sorts of other goods that he sells?  Well, he told Dayne to pick out whatever he wanted and gave us all tons of gifts.  After we hung out with him for a little while he took us all out to dinner with his friends.  At the restaurant he taught Dayne a few karate moves to do with his hands and told Dayne to "Never give up".  He told us not to waste our food and ate food off of our plates!  We had such a great time.  

Here is their new "home away from home" for the next three months.  

This is a close up of Daynes leg. One of the reasons for this surgery and trip to Baltimore.  When Dayne was four he had steel rods placed in all his long bones to help him avoid fractures.  Well, turns out his bones were so soft that they couldn't even support the weight of the rods and the rods ended up slipping through the lower ends of his bones, so the doctors replaced them and they were able to stay in place for a while.  What is happening here is (as mentioned above) his bones are curling around the rod.  The rod is now being held in only by a few layers of skin.  I cannot imagine the pain that this is causing him.  So the doctors are going to take bone grafts from his hips and combine them with some sort of medical cement, and replace that rod (somehow) and fill the holes in his bone with the new grafting material that they are making.  Hopefully he will have a straight leg within a couple of weeks.  

I will post updates as I get them.  Thank you so much for all of your kind thoughts and prayers and for thinking of Dayne.  If you are able to purchase a necklace or keychain, a large portion of the profit will go to helping Dayne.  #nevergiveup

  

Comments and earrings.

So we are new to the blog world  and didn't realize we had blocked the options for people to comment and to follow us.  We would actually love to hear what you have to say.  And since I'm still awake at this ugly hour (2:35 am) I will post our next fun item up for sale.

These earring are selling for 2.99 a pair (+s/h). The roses and big pink polka dots are roughly the size of a nickel. All others are roughly the size of a dime. All of them are dang cute.  Ha! These can be purchased right here on the left hand side of the blog.  

THANKS! 

-Brittani 

More on Parenting

Tonight I put my kids to bed around 8:40.  By 9:00 I had seen them all at least one time.  At 10:00 they were all still awake and I had seen each of them several more times.  I had given pickles, water, crackers, string cheese, a brownie (I know) and about twenty hugs.  They needed to use the bathroom, they had tummy aches, and wanted to talk about the next day.  It is kind of a funny thing because I start out frustrated and the more I see them the calmer I get.  (This happens every night)  I ended up tickling backs and trying to settle their little minds.  Eventually I was laying there listening to their different rhythms of breathing, left with my own thoughts.  While laying there thinking I remembered something I saw on Pinterest.

I have mixed feelings about this and may catch some flack from it.  But, truth is I am terrible at punishing.  Timeouts last about 30 seconds.  Because when my little girl is sitting against the door with tears in her eyes my heart breaks.   "Grounding" never happens, because really my kids are pretty good.  I do all the chores myself or with the help of handsome Mr. Lunnen.  Now they probably could help more with the chores (and we are getting there), but I am happy.  We are happy and my kids are awesome.  They are polite and friendly, and I do not believe they are stepping on my toes.  One thing is for sure, they know I love them.  But for some reason I go to bed every night and I mean every single night and lay there making a list of every thing I did wrong.  Every time I raised my voice a little, or every situation I could have handled better.   Parenting really is tough yet rewarding job!

So really is there a "right" way to parent your children or raise good children?  I say that whatever works for you is perfect.  

-Brittani

Anxiety in Parenting

Did you know that Anxiety is the most common mental illness in the United States?  Anxiety is defined as a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.  I am one of 3.6 million Americans that suffer from anxiety.  It is a disorder that consumes women and men alike, and even effects small children. That part in particular is something that is on my mind frequently.  Someone said to me once that anxious parents produce anxious children.  After I started having children I became very anxious.  As soon as I had my first baby I had an overwhelming feeling of responsibility.  Obviously I was responsible for raising this child because I was her mom, but my mind wouldn't stop.  What if my child gets hurt? Or worse, what if someone hurts my child? What if she gets lost or taken from our home at night?  I mean the list of worries just grew with each day and each child.  There is so much outside of my control, but I can control this.  My kids never go to bed without them hearing how much I love them.  They never leave the house without a hug, and we always try to lift them up and raise their confidence.
In 2007, on April 15th at around 9:00 am my brother called me.  I remember my husband was sitting on the couch and answered my phone and hollered that my brother needed to talk to me.  I finished doing what I was doing and quickly brushed out my hair, and then got to the phone.  He quickly informed me in a tear-filled voice that one of my beautiful sisters had passed away in the night.

That I needed to go and get her little boy.  My heart was breaking.  I kept thinking about her easter basket in the trunk of my car that I was going to give to her at our BBQ that night, that I would not see her in this life again, and that her baby boy would not remember her.    With this loss I felt physical pain.  That same year we lost two of our young cousins and and two uncles.  

In 2008, while in Nursing school, I developed an infection and my third little girl was born at 30 weeks gestation.  She was born weighing just above three pounds and requiring immediate CPR.  

 After the longest 30 days of my life (which was an incredibly shorter stay than expected) we took our perfectly healthy baby home.  I went back to school while she was in the NICU and in the middle of one of my classes (while my brother Dayne was in surgery) I had a terrible feeling and stepped out to call my mom.  She informed me that Dayne had coded, he was alive and thats all that she knew.

To save his life they did an emergency tracheostomy.  Dayne recovered at Primary childrens hospital for more than two weeks and was transported to Shriners for further treatment.  The day he was to be discharged home he was given a lethal dose of IV pain medication and rushed back to Primary childrens ICU.  This is one tough dude.  Who wouldn't want to help him right?! 

Well, back to my topic of anxiety...Id say it's safe to say anxiety is a fairly normal response to the life I live.  I found a quote that I keep close to my heart.  "When you realize how perfect life is you will tip your head back and laugh"- Buddha 

It is essential for me to look for the positive things in my life.  My healthy children and the beautiful and loving relationship I have with each of them.  The strength of the relationship and love I have with my husband.  And for all the amazing people in my life.  Including Dayne for his example to carry on no matter what is standing in your way.  

With all that said I am excited to post our newest item up on the blog.

Personalized Nest Necklace 16.00  

 I personalized mine with a "L" for my last name, and three pink beads for my little "squirrels" and a blue for my little monster.  These little people mean everything to me so this is a perfect piece to wear close to my heart.  I adore this piece of jewelry.
-Brittani

The beginning of our Online shop and blogging adventure.

Hello, Sweet LOVE!  For those of you who do not know me, my name is Brittani.  I am turning 31 this year (yikes).  So far my life has been pretty good.  I have three sweet little girls in school full time and a little monster boy who we are completely obsessed with.  He takes all of my time, rightfully so.  And I can't forget my super handsome husband.  What more could a girl want right? Well, that super handsome husband is a full time law student working on his 2nd of 3 years in Phoenix.

Speaking of Phoenix, it is so HOT here.  Everyone told us that we would "climatize" our second summer and that was not the case.  So we did what any sane person would do and bought season passes to the local water park.  We spent our summer chasing the little monster around and it was actually a lot of fun.  We love that little monster.  

Now that our scorching summer is over we are LOVING this 85 degree fall weather.  The husband is back in school full time. I decided to add a heavy load of college classes to my full time job of cooking, cleaning, chauffeuring to school and dance, play dates at the park, the new work-out group, loving on these beautiful kids of mine, and crumping!  Just kidding, not really though.  I may or may not try crumping during regular dance parties with the family.  Anyways, I guess I should mention that I am a  Licensed Practical Nurse, and have been for nearly 6 years.  The classes are to help me finally achieve my goal of becoming a Registered Nurse.  

I mentioned before that this is our second summer in Phoenix.  Before that, we were in Utah which is our "home".  Utah is not only where we grew up, fell in love and started our family, but also where most of our extended family is.  Now, those of you that do know me, know that I have a super cool brother named Dayne.

(For those of you who already know his story, Im sorry, but I'll make it quick) Dayne was born like any other baby, developed like any other baby/toddler, and met all his milestones until he was three I think. When he was three he broke his arm at the park.  My parents took him to the ER only to find out that not only was the arm broken, but that he had about 10-15 other broken bones, some that were healing.  After about a million doctor appointments Dayne was diagnosed with Spinabifida Occulta and Osteogenesis Imperfecta.  When he was five, just after he was the ring bearer for my wedding Dayne lost his ability to bear weight on his legs. 

After TONS of broken bones, surgeries, beginning phases of respiratory failure, tracheostomy, and a permanent wheelchair...Dayne was diagnosed with yet another disease.  "Disappearing bone disease".  It is exactly as it sounds.  I think that I failed to mention until now that through all of this Dayne has been nothing short of amazing.  He never thinks about himself.  I remember when he was ten, he went to the mall with me to get my little girls ears pierced.  Both of the girls cried, of course.  Well, Dayne was so sad.  He looked at me and asked, "Why would you hurt them for no reason?" He was not being rude, just concerned for the girls.  Anyway, Dayne is at a point in the progression of his three diseases where the doctors in Utah cannot help him.  He will be leaving on the 22nd of this month to travel to Baltimore to Johns Hopkins to have some life changing surgeries and medical care that possibly will allow him to stand up again.  Keep in mind he hasn't been able to stand up for 11 years.  

Alright, after all of these introductions and explanations, I am able to explain why I have set up the blog and why it has the name it does.  Reason one is that I would like to raise awareness for Dayne's situation.  And really hopefully if I am successful I can help raise awareness and financial support for other people who are suffering in other ways.  So, we decided we would do a little online shop with personalized necklaces, and other featured items and donate a portion of all the profit to someone in need, starting with my brother Dayne.  

As for the name.  Have you ever looked at someone you love and been 100% happy in that moment.  

I mean truly content with your life.  Well I have.  About a million times and it never gets old and I never get used to it.  For example, there are several moments in my day when I feel this way (don't get me wrong there are as many moments where I want to pull my hair out), but the moment my husband gets home from school after a long day, or when I take the little guy upstairs for a nap and we go through his fun little routine, or when I hug the kids good night and they tell me they love me.  These are those sweet loving moments that inspire me.  

So if you are able, buy one of our necklaces and help us make a difference.  

Thank you from the bottom of our hearts.