Friday, July 30, 2010

A Great Response!

So, my mommy had one of her random ideas -- usually those don't turn out so well (think Lucille Ball), but this time, it did!  It started when she and daddy went to the Nevus Outreach conference in Dallas a couple of weeks ago. They learned so much information about congenital nevi and they got really excited about sharing it.  You see, most medical professionals don't even know much, if anything, about this condition.  Well, mommy thought that the fountain of this information should begin where life does -- at the hospital.  That way, if another baby comes along wtih a Congenital Melanocytic Nevus, the parents will be better informed than mine were up front.  In our case, it took a while for mommy and daddy to find out anything about my condition, which was really scary for them.  Plus, I had some problems with it and no one knew what to do until we finally got to the detmatologist several days later.  So, mommy wrote a letter to the hospital** where I was born asking that they look into this medical condition and educate their staff and pediatricians about it to be better prepared next time it happens.  And guess, what -- THEY ARE!  Mommy fully expected the hospital to disregard her request, but instead she received a very warm, excited response.  She is so happy to hopefully make a difference in the lives of the next people dealing with this.  Thank you, Lori, for taking such an interest in our case and helping us to make a difference.

** Although mommy and daddy love the hospital where I was born and believe they had a reasonably good experience under the circumstances, we are leaving it nameless for privacy purposes. 

Sunday, July 25, 2010

One With God

Today, I reached a milestone, even though I am only 2 1/2 months old... I was baptised.  Although I may not understand any of this yet, my parents welcome me to accept God into my life.  They have faith that He will take good care of me, and they want to begin sharing their beliefs with me. Just before the ceremony, my mommy adorned me with a St. Joshua pendant.  She believes this will give me strength in the medical endeavors that lie ahead and nearby.  For those who are unfamiliar, Joshua -- biblically -- was a fighter and a believer.  And he succeeded in the massive undertaking that was commanded upon him.  My mommy and daddy have faith that I, too, will succeed in the face of the challenges awaiting me. 

Mommy and daddy had a nice family celebration for me afterwards at our house.  While they enjoyed spending the day with everyone, I just slept.  But that's ok, it was an exhaustng morning! I received some very nice gifts that I will cherish forever.  Thank you, to those who were there, for being a part of my special day!

Children are a gift of the Lord.  Psalm 127:3
My St. Joshua Pendant
How cute am I in my little tux?

Wednesday, July 14, 2010

It's a Date!

YES!  Wendy just called from Dr. Bauer's office with my first two surgery dates: December 30, 2010 and March 24, 2011.  Wow, I can't believe it!  Even though those dates are kind of far away, it is nice having the actual dates to look forward too.  And I haven't even mentioned the best part yet -- my new buddy Sully is having surgery on December 30 too!  So not only do I get this process started this year, but I'm going to get to meet my South Dakota buddy in person.  I am super excited!

Mommy and daddy are relieved as well.  You see, when they met with the local pediatric surgeon on my one-week birthday, she told them I couldn't have my surgeries begin until I was at least two-years-old.  But when they discovered Dr. Bauer in Chicago, they learned that he prefers to start as young as possible.  He says our bodies are built better for the stretching and recovering when we're younger.  Don't worry, he's got plenty of experience.  Dr. Bauer he has been doing this for over thirty years and has more experience with nevus removal from babies than any other doctor in the world.  Plus, this way, my four main surgeries should be done by the time I am 18 months old.  I'll never even remember having them.

So, what else can I say except that "It's a date!"

Sunday, July 11, 2010

So, Here We Are

I am two-months-old now, and the time has gone by like a whirlwind.  Recently, mommy and daddy discovered a wonderful organization called Nevus Outreach, Inc.  It is a non-profit organization that provides information and support to people with a CMN or parents of a child with one.  They have made some wonderful friends through this group, particularly Beth from South Dakota (mom to 11-month-old Sully) and Merilee from Montana (mom to 4-month-old Brooklyn).  Sully, Brooklyn, and I are all going to the same spectacular surgeon in Chicago, and I hope to see them there during at least one of my trips.

Mommy and daddy recently traveled to the great city of Dallas, Texas, to attend a medical conference sponsored by Nevus Outreach, Inc.  They say it was absolutely amazing.  There were medical experts from all over the world presenting information (much of which I've already told you about) and doing FREE consults on people like me.  They were so excited when they got to meet my surgeon from Chicago, Dr. Bruce Bauer, and his amazing staff, Wendy, Mim and Susan.  Mommy and daddy had such a great time at the conference and were totally energized and inspired by the people they met. 

Mommy has a few of her own missions now.  First, she does lots of praying for me, and is looking for people to join her.  She has faith that this story is going to have a happy ending, and has already achieved so many wonderful experiences out of this situation.  She also wants to help spread the word and teach people about CMNs.  It is sad, but because this is so rare, most medical professionals don't know anything about it.  She's hoping that, at the very least, the hospitals will follow her request to educate their staff, so that other new moms of babies with a CMN will be more informed up front and less scared durng their hospital stays.  Finally, mommy is going to create and publish a cookbook to help fund my many trips to Chicago.  That is going to be a big job, but it should be worthwhile.  She was inspired to do so by Beth from South Dakota, who did the same thing and welcomed her to join in the fun.  I know it is a huge endeavor, and I appreciate it.  My mommy loves me more than the world, and she hopes I know how special I am to her.  So, mommy is going to be busy, but I'll let you know how it goes.  The first step is over though -- my blog is up!

Now, before I close up shop for the night, I have to share a couple of pictures from the conference.  Mommy loves looking at these pictures, becasue she knows these people are going to be so special in our lives. 

Me with my new Auntie Beth
Notice I'm sporting the awesome Superhero cape she had specially made for me?

Me with Wendy
Wendy is already looking out for mom and I.  We appreciate it, Wendy!!

Thursday, July 8, 2010

All About My Special Skin

Mommy and daddy spent the first couple of weeks after I was born seeing doctor after doctor so that they could  learn all about my condition, and determine if it could be treated.  They are happy for me to share the information they have learned with you.

So, by now you're probably asking, "Exactly what is a Congenital Melanocytic Nevus?"  Mommy and daddy certainly were, because they had never heard of it before I was born either.  Indeed, this condition cannot be predicted in pregnancy, so the first they learned of it was when I was born.  Well, I'm about to give you all the goods on this special skin that I was born with, and just to satisfy your curiosity, I'll include a picture.  Mommy says to warn you that it is rather graphic, being on my rear end and all.  So I'll put the photo at the bottom of this post in case you'd rather not look.

Ah ha!  Caught you -- you looked!  Well, let me first say that it's not as bad as it looks.  First of all, it doesn't hurt me.  Second, no, I don't mind you looking.  When I go to the doctor, a bunch of student doctors come in just to check out my behind.  It makes me feel so special.  And how else will you learn about CMNs if you don't know what it looks like?  Finally, I feel very fortunate, because my CMN is small enough to be removed.  There are lots of others out there with a CMN over a much larger part of their body, and those cannot be treated.

Ok, so now it's time for CMN 101.  A CMN is basically a giant mole.  It is dangerous because it could become malignant, developing melanoma.  As I said before, my CMN is borderline between the Large and Giant classification, which has a 0-10% risk of melanoma.  That is why it is so important that I get it removed.  No one knows exactly what causes it, either.  Now, here's some shocking information -- a Giant CMN only occurs in 1 in 500,000 births!  See how special I am?  I'm 2 in a million!   

A CMN has several parts.  There is usually the large part, like the one on my back and bottom (although it can be anywhere on a person's body).  My dermatologist calls this "the mothership."  Then there are "satellites," which are (on me) the smaller circular sized ones above the mothership and on my thighs.  I have a lot of satellites, and most of them won't be removed.  So far, the majority just look like little freckles, and I hardly notice them. 

Then, there is a much more difficult aspect of a CMN -- a condition called Neurocutaneous Melanocytosis (NCM), which is a serious neurological disorder.  This happens when satellites develop on the brain and/or spine.  We won't know if I have this until I undergo an MRI, which the doctors won't do until I am three months old because they have to put me under general anesthesia.  My MRI is scheduled for August 5 -- concidentally, my three month birthday.  If you'd like to throw an extra prayer my way, I won't mind.  But so far, the doctor has no reason to believe I have NCM.  I'm keeping my fingers crossed and prayers going, though.

Here are a few other interesting facts about my CMN:
* I have TWO, count 'em TWO, DNA profiles -- my regular one and my nevus one.  Bet you didn't think that was possible!
* I have no sweat glands in my nevus skin.  So mommy has to watch that I don't get overheated, especially living in sunny Arizona.
* My nevus skin is very delicate and can easily get hurt so I have to be careful with it.  Good thing it's mostly on my bottom!

Ok, now the question is, "How does a doctor remove this thing?"  You won't believe it!  The science behind the surgery is so impressive, and I am excited to be a part of medical history here.  The process is called Tissue Expansion.  First, "expanders" will be placed under my skin in a couple of places (probably over my lovehandals -- even though I technically don't have those yet!).  The expanders are like balloons, which my mommy and daddy will slowly fill with saline over 12 weeks' time.  This will stretch my good skin out nice and far.  When the 12 weeks are over, the doctor will take out the expanders and cut off part of the CMN, stretching the new skin to cover it.  Isn't that amazing?  The doctor says I will probably have to repeat this procedure at least twice, and then will maybe need some reconstruction after that.  So, it's looking like 4 surgeries for sure, probably 5, and possibly 7.  Let's hope for no more than 5!  The good thing is that the first four should be done before my second birthday, and I'll never remember them.

Well, that is a lot of information for me to share right now.  I hope you have enjoyed learning about it as much as I've enjoyed teaching you.  I am so blessed, because my mommy and daddy found me the best surgeon in the world (that is no exaggeration), and they will be taking me to his hospital in Chicago for my surgeries.  So don't worry too much about me ... I'm in excellent hands.

Monday, July 5, 2010

Look Out Mom and Dad, Here I Come!

It was May 5, 2010.  The sun was shining, and my parents were expecting a beautiful day ahead of them ... I was going to be born!  Mom and dad arrived at the hospital precisely at 7:30 a.m., as they had been instructed.  By 9:30, mom was wheeled into the operating room for her cecerean section.  At 10:08, the doctor told her she was about to be a mom, and at 10:09, out I came!  Mommy and daddy heard my cry as I was lifted up, and then began to cry themselves ... with tears of joy of course! 

Without further adieu, let me introduce myself. My name is Joshua and I was 7 pounds, 9 ounces, and 20 inches long at birth. I live with my mommy and daddy in Arizona, and have a wonderful 2-year-old sister who loves me beyond belief.  Here I am at one-day-old.


As the doctors began to examine me after my birth, mommy and daddy heard them comment that I had a "significant birthmark" on my bottom.  A few moments later, they saw this birthmark, and were quite surprised.  As it turns out, I had developted a Congenital Melanocytic Nevus (CMN), which is an extremely rare birthmark created in-utero.  It begins at my lower back, covers my entire behind, and wraps just slightly onto the sides of my waist.  I also have some "satellite" spots of this CMN on my legs and head.  We later learned that a CMN is categorized by size, and mine is on the border between Large and Giant.   

The hours after my birth were an emotional blur for mommy and daddy.  Unfortunately, because a CMN is so rare (I'll tell you more about CMNs later on), nobody could tell them much about my condition.  I went to the NICU for examination, where the neonatologist told them he "believed" it was a CMN, and that we would need to see a dermatologist and a surgeon to get more information.  They also said I needed a full-spinal ultrasound to make sure I don't have a "tethered spine," which can happen to someone with this condition.  The ultrasound was completed when I was one-day-old, and it was normal, thank God.

Mommy and daddy spent the next five days in the hospital, and just focused on enjoying their beautiful new baby boy.  All of the hard stuff would come later ....