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Tuesday, December 24, 2013

Our Christmas card to you!

As I sit here on the eve before Christmas, it dawns on me that Christmas cards are just not happening this year.  I could list a dozen reasons why but the truth is, it just didn't happen.  Now before all of you black list me from receiving future cards, please know that I love and cherish every card I receive and next year I vow to get some cute darling cards out before Christmas. So this is my Christmas card to you!


2013 was an interesting year in the Murphy house.  January started our year with renewed energy and determination for a year of fitness, good health and charity.  Gary earned the title of Advisor of the Year at his work's national conference.  If he earns that title again this year, they will send us to Hawaii so we are eagerly waiting for the news again this January. He has had a very prosperous year at his job reaching several personal lifetime goals. Gary has also found a passion for fitness through Crossfit and his results have been amazing (if I do say so myself).

I joined J & M Strength and Conditioning where I began working on healing some old injuries through strength training.  Although I've spent much of the year researching treatments, doctors and natural ways of healing the disorders inflicting our children this year, I also started working toward a personal goal of starting a business in essential oils.  I am looking forward to launching this business in January.



Brayden finished the school year in May by earning the status of Outstanding student in school.   In Boy scouts he earned his Bobcat and made a winning derby car.



Brayden finished 2013 by winning the Reflections Art contest at his school in the area of Visual Arts.


Although Brayden's medical condition has left him homebound from school, he continues to make great academic progress.  His love for art and reading have really flourished in 2013 and we look forward to seeing him meet his potential when his brain begins to heal.

Teagan enjoyed her year with girl scouts. I was the cookie mom this year so we had a room filled with cookies in March.



She continued to express herself through fashion.



Teagan finally joined chorus again at the end of the year. She sings all day long in our house and it was a big step for her to get over her stage fright and perform in the Christmas program.


Teagan also bridged to brownies in girl scouts this year.  As you can see, she was thrilled.


For the first time, she was selected as a school winner in the Reflections art contest for photography.



Ellie turned three this year!  It is hard to imagine that she is no longer a little toddler.  She had an exciting year of YMCA classes, Gymboree classes and play dates.  She is such an active fun loving girl and it has been so rewarding watching her grow this year.







In 2013, we had many fun excursions as a family.  We took a break from the winter cold with a trip to a water park.  We all loved the fun and exercise this excursion provided for us.


We took a day to go hiking with the boy scouts in the brisk winter weather.




Gary, Brayden, Uncle Dennis and cousins John and Daniel took their annual backpacking trip in the Smoky Mountains.




In June, we headed to the Outerbanks for a camping adventure of a lifetime.  You can read about that trip starting with this post. http://www.blogger.com/blogger.g?blogID=1645619874961416194#editor/target=post;postID=6499771748431410458;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=18;src=postname



We spent the 4th of July in Knoxville, Tennesse, visiting my mom, along with my Aunt Liz and Uncle Al.  We had a blast boating!




In August, we took our annual trip to Lake Michigan for what would be our last vacation in Lost Valley due to the sale of my in laws beloved lake front home.  We were fortunate to have some friends join us for a day.


Of course there was a golf out at Old Channel Trail.





and lots of dune climbing.




Our final trip of the year was to Pennsylvania to see Aunt Julie and Uncle Dan. Ellie had a blast with Aunt Julie at the Crayola factory.  The girls also had a visit to the Peep store.

As I reflect on 2013, I realize there were many good times, many trials and many firsts.  We have had to face the the unthinkable with regards to our children's health. The road ahead of us is long and uncertain. One thing we know for sure is that we are stronger as a family, stronger as parents and strong enough to battle the unknown in our quest for health.


So although we did not send out Christmas cards this year, we hope you know that we are thinking about each of you that have touched our lives in 2013. Whether it was from a visit, card, or simple facebook message, we appreciate each and everyone of you. We wish all of our family, and friends, new and old, a very Merry Christmas, Happy Holiday and a safe and healthy New Year.

Love,
The Murphy Family

Wednesday, November 6, 2013

A Dinosaur Tale by Brayden

Recently, Brayden's homebound teacher asked that he write a story.  His assignment for the week was to come up with the characters and the story's problem.  I know it takes him a long time to develop a thought but after 20 minutes of trying to get him to name a few characters I about gave up.  Then he started to twitch, grab his neck and follow a series of other compulsions and tics before spewing out this entire story.  He apparently had to develop the whole story before he could name his characters.  I thought it was really sweet and wanted to share.  Here it is...

"Once upon a time, a Triceratops and a T-rex had a picnic.  The T-rex brought meat and the Triceratops brought plants.  They wanted to share their food but they ate different foods.

The next day, they both were searching for a friend who ate both things so they could share.  They kept looking everywhere.  Then they found a dragonfly and they wondered if it ate both things.  The dragonfly just flied away.

They were in the forest and they saw something run up a hill so they ran after it to see what it was.  They saw a dinosaur that had a long neck, was kind of small, with legs that could move fast.  It was a Gallimimus!

The T-rex and the Triceratops said, "What do you eat?"  The Gallimimus said, "I eat plants and meat."  Then they asked the Gallimimus if he would like to have a picnic with them.  The Gallimumus said, "yes".  Then they all got to share their food.  The End."

Monday, November 4, 2013

An update!

So last post I mentioned that we were headed to New Jersey to see an "expert" in PANS/PANDAS.  The trip went as well as one can go and it was humbling to meet Dr. Trifiletti (Dr. T) and all the brilliance he brings to this disorder.  For Brayden, he added another antibiotic and more lab work.  For Teagan, just more lab work.

The results showed that Teagan had both a current and past infection to the Coxsackie virus, type B, and antibodies for a past infection to Type A.  Type A is commonly known as hand, foot and mouth disease.  Brayden had antibodies forming for Type B. It is interesting how the human body works.  Neither of my children have ever had symptoms of either virus that I'm aware of yet their body is fighting it.  Both were prescribed an antiviral to stop the process.

Teagan's labs showed again many "interesting" things that unfortunately required yet more lab work that is still pending.  She continues to intrigue every doctor she encounters with her lab results and clinical presentation.  Dr. T did a great job of explaining the possible connection to Teagan's fever disorder as a toddler and her current symptoms.  Apparently she has an immune marker now that is common among children battling the fever disorder she had as a toddler.  That is why you pay this man the big bucks, to find connections like that.  His current theory on Teagan is called an "alternative fever response".  Instead of battling infections with a fever, she develops untraditional symptoms to viruses attacking her body.  I'm still learning about this "alternative fever response" hypothesis and hope to post more on it later.  All I know is she doesn't get a fever anymore for any illness and that is not a good thing!

For now, this is all I can provide for an update until we have another phone consult with Dr. T.  He ordered extensive genetic testing, lyme testing and many other tests.  We talk again in 10 days.  The wait never ends!