Stay Tuned for the Steele annual Christmas letter being posted soon!

Well Christmas cards are finally mailed out and what do I do....I put a link to my blog stating that I will have our annual Christmas letter available to read here.  Well.....I'm still working on it and I encourage you to stay patient and keep checking back in order to read the "real" thing ;)

Life just hasn't seemed to slow down enough to complete the little tasks but rest assured they will get done eventually.  I mean that's all that really matters, right?

Happy Holidays and I will be posting very soon!

Korbin's Cause

What is it about Summer?  From the day after Christmas I am counting down the days until its arrival.  I anticipate the smell of the fresh cut grass and the smell of chlorine.  I always seem to overload myself and the kids with activities in order to feel as though we are getting the most out of every summer day.  And although I try so hard to savor every moment of the summers warmth, smell and feel - before I know it, I blink and its over.

I can't complain too much because we feel we've made great accomplishments this summer - Korbin has made tremendous strides with his perthes disease.  He has been such a hard worker this summer and although I often got "mom, do I have to go.....SIGH" with EVERY physical therapy appointment we had to go to, I think he has now realized how much his hard work has paid off.  


At the end of July we had another follow-up appointment with his orthopedic surgeon and it was good news all around.  First, the place that they cut his femur bone and the bracket that they put in place is healing so well that he is able to try running to his comfort level.  It has been over a year since he has been allowed to run, so if you can imagine, he IS thrilled and is working hard to develop a run as normal as possible.  Second, we were thrilled to hear that Korbin has now entered the rebuilding phase of the disease!  Although the signs were very small, they were still there, which means the head of the femur bone is no longer collapsing.  The doctor did explain that it can take anywhere from 2-5 years for the head of his femur bone to grow back and it is up to his body to decide how much of it will grow and the shape that it will grow back to.....but that is neither here nor there....what matters at THIS moment is our little boy is walking and running again because of all of HIS hard work and we are happy, positive and living life right NOW and we will tackle one thing at a time.

In fact this year has really impacted Korbin in such a positive way.  He has more interest than ever as to why diseases happen and how he wishes there was something he could do to stop them.  Korbin has mentioned many times "mom, I don't want diabetes anymore," which of course hits me where it hurts but on his own idea, he decided that he wanted to take part in the Juvenile Diabetes Research Foundation's Walk to Cure Diabetes this year in an effort to raise money for a cure.  As parents, we couldn't be prouder!  So away we went this summer sending out campaign letters, blowing up facebook with fundraiser reminders, and going around to businesses we know in order to start Korbin on the path towards his goal of raising $2000.  So far we have raised $1475 towards his team, which he named "Korbin's Crew for a Cure!"  Did I mention I was proud!...It won't be the last.

Well the walk is on September 25th, 2010, 8:30am at the Scera Park in Orem.  With there only being a few weeks left to fundraise, we are definitely trying now more than ever to hit Korbin's goal.......SO what better way to get a community together than to have a HUGE FUNDRAISER YARD SALE!!


On September 18th in Springville, UTAH our family is having a HUGE YARD SALE from 8AM til 2PM and we invite ALL of you interested in donating to ATTEND!!! If you are able and willing to donate any furniture or clothing items (must be in good repair and clean) towards the sale then PLEASE message me! You can donate financially via their JDRF website attached to this NOTE. 



http://walk.jdrf.org/index.cfm?fuseaction=extranet.personalpage&confirmID=87695180


Now what makes this Yard Sale even more exciting is that my amazingly talented friend - KatieJo Patton Welch will be offering an amazing photography service called "I AM" Photography and at an amazing price during the Yard Sale.  Don't miss out on this opportunity!!  Click on this link to go to her blog to learn more  and you can email her for any further questions on her service. 


   KWelchDesign Photography: KORBIN's CAUSE   




Here are some examples of My handsome Korbin and beautiful Kaitlyn!  We feel blessed to have received this inspiring service.

And Life Goes On...

All I can say is "Wow, what a crazy ride!"  I have to admit that these last couple of months have been tough but they have gone by fast and with my school finals coming to an end, signs of Spring, and Korbin starting to walk without assistance....I can FINALLY see a light at the end of the tunnel!

For those of you that haven't already heard, Korbin had his follow-up appointment on April 12 and his x-rays showed that the surgery is healing well enough for Korbin to start walking again!  To be honest we didn't really know what to expect, especially after being in a wheelchair for almost eight weeks.  Our hope was for him to just get up and go but like everything else it didn't come without challenges.  Korbin is re-learning to walk all over again and it has been a very slow and difficult process thus far.

At first, the okay to start walking was a day Korbin was looking forward to but it quickly turned to disappointment after he learned that it was harder than he thought it would be.  The therapist started him out on a walker and for the first week he was only comfortable to take a few steps at a time.  Any other time you would catch him crawling on his hands and knees to get him where he wanted to go.  Brad and I have found that each day needs to consist of constant support, encouragement, and even a little tough love to keep him motivated.

Korbin is still going to school in his wheelchair until he is able to walk strongly without assistance by request of his therapist.  Brad and I have been feeling like the wheelchair is going to haunt us forever!  Korbin has not only taken several chunks out of our walls but just got busted at school by tipping flat on his back by doing a wheelie...that's our boy!

Okay, now for an emotional moment.  This whole ordeal has been nothing but hard to watch and what took me by surprise was how heartbreaking it has been watching him struggle to gain his independence back.  It is so difficult to watch my child limp, hobble and stumble under the weight of his own body.  It is gut wrenching to wipe his tears at the end of the day because his feet hurt so badly he can't stand up anymore.  It is extremely hard to hold back my own tears when I look at his defeated face and tell him not to give up.  I wish nothing more than to take his place because I realize that I honestly can't imagine what he is going through physically.

It wasn't until the past two days that Korbin's determination has kicked in and he has decided that he is not giving up or giving in to this stupid disease.  He has ditched the walker and is committed to walking on his own.  He is still struggling to turn his foot in when he walks but he is making leaps and bounds!  And although I have known this all along I just have to say that at the end of the day I sit back watching his progress and realize that I have one AMAZING little boy!  He has so many forces against him and although he has had his moments of tears and defeat, he doesn't give up!  He finds the positive in everything and continues to push through his challenges each and everyday.  He truly is my hero and I am continuing to learn so much from him.

Although Korbin has more challenges to face with perthes disease, we have started to barrel through some pretty big hurdles.  Brad and I are SO proud to have Korbin as our son!  He brings new meaning to the words TOUGH, STRONG, OPTIMISM, and DETERMINATION. Keep it up buddy!  We LOVE you sooo much and one day mommy and daddy promise this challenge WILL all be over!

Which Emotion Should I Choose?

I have finally found a moment to sit and contemplate all that I have experienced with my son and all that he is going through. I wish that I could put into words an emotion that fits all that you could feel at one time.

I have often confused myself wondering which emotion is best suited for a particular moment or even for the day.... is it fear, frustration, anxiety, sadness, disappointment, anger, helplessness, joy, excitement, love, or happiness? Then I realize that they are all there, all at once.

When Korbin was diagnosed with type 1 diabetes at 18 months old, it was a surreal moment. As we looked at our little baby lying in his hospital crib bed, we kept thinking, is this really happening to us? They had to have diagnosed him wrong, is he really going to have this for the rest of his life? What did this mean for him growing up? Do I have what it takes to do this? He is just to little to deal with this!

I can't tell you how many times I cried and cried hard because I couldn't even explain to Korbin why we had to poke his tiny little fingers several times a day, why he had to have several shots a day, why he couldn't just eat what he wanted and when he wanted and why I would get so frustrated that he wouldn't eat because he had low blood sugars that could cause a seizure.

I remember syringing orange juice into my son's mouth in the middle of the night until he was coherent enough to chew on something sweet to bring up a bad low. I remember going out to eat and getting upset in trying to figure out how we were going to calculate all of the food he just ate and hope that it was enough to measure on a needle. I remember quitting my jobs because most daycares we talked to would not return our phone calls. I remember my son's first ambulance ride and then learning to hate visits to the ER because they never knew what they were doing. I remember the first time my son was able to tell me he felt low. I was over the moon with emotion because for the first time he was able to communicate his disease with me. I remember the birth of my daughter to be so wonderful but at the same time feeling so horrible coming home to an empty home because my son was being admitted to Primary Children's Medical Center for an illness that made his blood sugars uncontrollable. I remember the first day of school and I know that for most parents, their kids starting school is such a wonderful, happy and emotional moment but all I could think about was the fear I had in knowing that Korbin was the school's first diabetic.

....As the years went by, step by step and year by year the challenges have come and gone. There were some very low times but I always found the positive as time went on and felt like "hey, this isn't so bad. We can do this and it's getting easier with every moment."

Which brings me to now...the diagnosis of yet another devastating disease known as Legg-Calve-Perthes disease. http://orthoinfo.aaos.org/topic.cfm?topic=A00070

The diagnosis came as a blow to our family last year in May 2009. Korbin had just started the baseball season only to learn that he is no longer allowed to run and jump. How do you tell and take this away from your child when he has already dealt with so much? Next came a year of painful days and not so painful days to then learning he needs a major hip surgery.

Of course my son is nothing but amazing and he takes most everything in stride, but it doesn't keep my tears from falling when there are those days that he says, "mom, why did the world have to invent diseases? I don't want diabetes and perthes anymore."

As I looked at my son lying in his hospital bed in agony and pain, I felt anger and frustration that this is happening to him....I can't help but think to myself that this is just not fair, he doesn't need to deal with anything else! Then in the same moment, I look towards the hallway at another mom who is holding her son with a severely deformed leg in a cast and the other amputated and feel ashamed for having such selfish thoughts.

I felt excitement and happiness to see my son out of his hospital bed and into a wheelchair for the first time in three days but at the same time I step back and think to myself....am I really seeing my baby boy in a wheelchair right now?

I watch all the kids running, jumping and playing in the street in our neighborhood and feel sadness that my son is being robbed of this privelage as he sits on the couch watching tv.....but in that same moment a commercial comes on about fundraising for kids dying from cancer at St. Judes Hospital and I am humbled.

As I feel my sore muscles in my back from carrying my son to and from the bathroom, car or up the stairs, or even dealing with the adjustments of my son losing his independence to perform the simple tasks of dressing, bathing or grooming; I can't help but realize that yes I'm sore and tired but it also makes me think about those that have no choice but to live this way for the rest of their lives. It's an empathy you can not feel until you live it.

With all of this information, it leads me to my initial question. "Which emotion should I choose?" The answer is all of them.

We have been chosen for these challenges and I've realized that with each experience our family is getting stronger and wiser but I also realize that I have every right to be mad at the world for what my little boy has to deal with...I'm only human. No it's not fair and neither is life, but things like this make you appreciate it that much more. We all have our challenges and we all deserve our own self pity but in the thick of it all it's also appropriate to remember that things could always be a lot worse. So we choose to embrace, live and learn from our challenges and hope that it helps us grow as individuals, especially as a family. It doesn't make life any easier, just more tolerable.

Last but not least, these challenges don't go without a thankful heart to all of our wonderful and amazing family and friends that show love and support for us each and everyday. I can't tell you how blessed we are to have the people that we do in our lives. During these challenging times we have had the most amazing love shown for our family from people near and far as well as from people who don't even know us. Words will never be able to express the gratitude we wish to get across, but know that we are sincere when we say thank you and that it is from the bottom of our hearts.

Never A Dull Moment

Well I know that this has already been sent to many of you in an email but I figure it might as well make it on here too.
Most of you know that Korbin was recently accepted to Shriners Hospital in SLC for his perthes disease and that his first appointment with them confirmed what we have been dreading with Korbin needing surgery. Korbin is scheduled to be admitted to Shriners on Feb. 23rd and he will go in for surgery first thing in the morning on the 24th. He will be staying there for 3 to 5 days.

The surgery that they will be doing is called a varus osteotomy with an adductor muscle tendon release. This is a major surgery that involves cutting a wedge shape piece of bone out of the neck of the femur bone and then repositioning the head of the femur bone into the hip socket for better containment. They then attach a piece of hardware that will keep the head in that position until blood will hopefully be restored to the head in order for it to rebuild. They will also do a tendon release of his adductor muscles in order to keep them from shortening. This is not a cure for perthes but a containment method and the reason this is need is because his bone is subluxing out of the hip joint.

I just thought that I would email a link that shows a picture of the hardware that Korbin is going to have in his leg with the surgery, http://orthoinfo.aaos.org/topic.cfm?topic=A00070. (You have to scroll all the way down to the bottom) It also gives some great information about the disease that Korbin is going through. The one thing that will be awesome is that he doesn't have to have the casts from chest to toes! I seriously don't know what I would do with him if that was the case. He will still need to be in a wheelchair for 6 weeks and then move to crutches and eventually will be able to walk after extensive physical therapy. His hardware will need to be removed with another surgery that will be performed next year.

I also attached Korbin's current x-rays from Jan. 25th so you can see them. Sorry that some of the pictures are a little small. I also talked to the doctor in Baltimore, MD to get yet another opinion and although he admitted that he was bias and preferred his surgery method, he did agree that by looking at Korbin's x-rays that he does need more aggressive treatment. So in a way that was a good confirmation for us that we are heading in the right direction and that the surgery we are going to have is necessary.

Korbin has an amazing attitude thus far and is not scared of the surgery. I will give you an update as to how he feels about that post op. Unfortunately this is a painful surgery and I know it will take our family and friends to aid in his recovery. Many people have asked what they can do and at this point we really don't know. This is going to be a big change for all of us and what we feel is most important is love and support. If anyone would like, Korbin loves snail mail! Cards, notes or letters would make his day!

We will try to keep everyone updated as best as we can and I will try to post pictures when I can. Keep Korbin in your prayers and thoughts this upcoming week and we appreciate all the love and support we have been receiving!