Friday, December 31, 2010

1 Down, 3 to Go!

It is about 24 hours post-first surgery here at Highland Park Hospital in Chicago.  It is raining, "warm" (you know, 49 degrees warm), and the snow is quickly melting.  I am relatively quiet and calm, enjoying whatever pain killers they are willing to pump me with, and "contently" laying belly to belly with my mommy or daddy at any given time.

Yesterday morning, we arrived at the hospital at 6:00 a.m. Of course, I had no idea what I was in for... just look at how happy I was!

All bundled up, just arriving at the hospital
The nurse quickly got me changed and hooked up to all the do-dads they need to keep track of the important stuff. And then Dr. Bauer came in to touch base before we got to the main event.

Pre-Op nurse getting me ready

How cute am I in my hospital gown???

Dr. B is ready... am I?
At 7:30 a.m., the nurse whisked me away, and mom and dad went to the waiting room.  Surgery lasted about 2 hours, and then Dr. Bauer happily came in to tell mom and dad that it went very well.  He implanted two 500 cc expanders under my skin, just above my nevus.  They were already filled with 75 cc of saline, which gives us a great start on expansion.  Just below the expanders, and under the nevus, he placed the tubes and ports that mom and dad will access to fill my expanders on a weekly basis.  I think we are aiming for 600-700 cc each by the end of expansion.  Don't ask me how we're supposed to put that into a 500 cc expander -- but they'll tell us when we do my first fill.

As an added bonus, Dr. Bauer was able to remove BOTH of the annoying lumps that were on the very sensitive area of my bottom, as well as another little nodule that was problematic.  Mom didn't want to post such a graphic photo, but she says my bottom looks great, and I'll take her word for it!

We spent about an hour in recovery, while my temperature and oxygen levels came up.  Then, we settled into our room.  My Nana and Great Auntie and Uncle came with my sissy, and that helped to perk me up.  As soon as I heard her voice, I looked up, and she sang me some songs to cheer me up. 

Sissy singing to me

Sissy with Nana and Auntie
By mid-afternoon, though, my numbing anesthesia had worn off, and it was definitely time for pain meds.  Needless to say, I was rather uncomfortable.

They started with plain infant ibuprofin and then infant Tylenol, but those just didn't cut it.  Before bed, the nurse got me an order for Tylenol with Codeine, and that was much better.  We were able to sleep on and off all night in a chair, with just slight hourly interruptions of pain.  I got a second dose of the good stuff at about 4:30 a.m., and some more ibuprofin this morning.  I haven't been able to get comfortable enough to nurse, but have taken a couple of bottles, and we can see my appetite coming back slowly.

Relatively early this morning, we got to do the unveiling, and mommy and daddy got to see my backside for the first time. 

Getting ready to change my dressing for the first time. 
Look - I even held my bear! 

The stitches are on the sides just under the top of the nevus.
You can just barely see the bump from the expanders right above the stitches. The expanders will be more obvious as the swelling goes down.
We change my dressings daily, and I also have drainage tubes coming from the incision that will stay in for 11 days.  Mom and dad have to change the drains every 4 hours, but it isn't hard to do.  We will see Dr. Bauer's staff on Monday for a check-up, and then again a week from Monday to remove the drains and do my first expansion. 

All in all, this has been a rough experience, and I am nowhere near myself yet, but it is coming.  I'm a strong boy, I have a strong family, and we are so very blessed to have the most wonderful friends, family and medical staff to get us through this.  We couldn't do it without you.

Cuddling up to mama the morning after
On a final note, I did get to see my buddy Sully for a quick minute yesterday.  His surgery went well also, and he is feeling about how I am feeling.  But he is a trooper, and he is showing me how to take charge of this situation.  As soon as we're up to getting a picture together, we'll post it.

Wednesday, December 29, 2010

Welcome to Chicago!

We made it!  On Monday, December 27th, we got up very early, got on a plane, and flew to Chicago.  Our plane ride was uneventful, and both my sissy and I had a good time.  My sissy, in fact, thought the plane ride was lots of fun. Here she is enjoying the take off...

I did pretty good myself...

We got here expecting bone-chilling cold.  And yes, it is very cold.  But nowhere near as cold as we all expected.  We have hardly had to bundle up!  But we have beautiful snowy views for sure, and can't wait to get out and play in it.

View from our hotel room

View from our friend's home

So, what have we been doing all this time?  It has actually been pretty busy.  Monday was full of travel and getting settled.  Yesterday, daddy drove us around his hometown, which is about an hour from our hotel.  And today was spent at Dr. Bauer's office.  We spent a lot of time there - much of it waiting.  But that's the price you pay for choosing the best doctor in the world, so we didn't mind.  We also got to see our new and dear friends from South Dakota, the Nagels.  Sully, who is 17 months old, is having his 4th nevus surgery tomorrow, right after my first surgery.  I have a feeling he and I will be great buddies in the future.

I am scheduled for surgery tomorrow at 7:30 a.m., which means we have to check in "dark" and early at 6:00.  Surgery should take about 2 hours, and Dr. B showed us exactly where to expect the expanders, ports and tubes.  He also showed the little parts he hopes to begin removing tomorrow.  It is going to be a big day!  When I wake up from surgery, I should be relatively comfortable because they'll be giving me a numbing anesthesia to help me adjust.  I'll be bundled up in bandages for days, so we won't get a good look probably until at least next week. 

Dr. B also talked to my parents about what we can expect in future surgeries, and it all sounds good.  We are so relieved to finally get this process started, and are looking forward to the light at the end of the tunnel.

We will keep you posted on how it all goes.  Please join me in praying for all of the surgeries coming up to go well.  Not only is my friend Sully having surgery tomorrow, but my other friends Zac (8 months, Arizona) and Brooklyn (10 months, Montana) are having their first surgeries with Dr. B next week.  We are definitely all in the best hands possible, though, and are ready for this adventure!

Friday, December 24, 2010

Getting Ready for Chicago...

MERRY CHRISTMAS everyone!!  Today is Christmas Eve, and tomorrow is my first Christmas.  We leave for Chicago 3 days from now, with my first of four surgeries over the next year just 6 days away.  Anxious?  I guess we are.  But more so about getting there and getting started, and about my recovery, than about the actual surgeries.  I know we have the most spectacular surgical team we could ever have been blessed with, and they will take excellent care of me.

We did have a little hurdle though, when my doctor found a double ear infection at my pre-op physical appointment last week.  She put me on an antibiotic, and thank God my ears cleared up beautifully.  I still have the slightest bit of congestion, and as long as it doesn't progress into anything, we will be good to go.  But we're all on pins and needles just waiting.  Don't worry, I am not sick.  It just happens that my teeth decided to start popping out -- in just one week, I got my THREE first teeth!  So that is the culprit, and we think it should all be ok.  The plane ride is probably more of a risk, but I am taking a back-up antibiotic to help protect me and keep me healthy until next Thursday.

So, what's the plan?  We will get to Chicago on Monday, which will give us a day to get acquainted with the city and get settled before meeting with Dr. Bauer on Wednesday.  On Thursday, I'll go in for surgery, where he will be place two (I think two) expanders in my body.  I believe they will be around my waist, but we'll find out more when we meet with him on Wednesday.  He will also be removing one of two little lumps I have on my bottom.  The other one will be removed in the second surgery.  We will go back to Dr. Bauer's office about 10 days later, and they will "fill" my expanders once before we come home.  In general, that's what we're expecting.  We will definitely update you when possible during our trip. 

Until then, enjoy the holidays, wish us luck, and please pray with us.

Sunday, December 12, 2010

Good News with MRI #2!

After two weeks of working to coordinate two different doctors' orders for my second MRI, the hospital finally got the paperwork straight and scheduled me right away -- the next afternoon in fact.  So, last Thursday, December 9, I went in for the scan.  It was a very long scan - over 2 hours - and it included my brain and neck, and cervical, thoracic and lumbar spine.  So basically, the whole shebang!  And, of course, mom made SURE that they performed the MRI according to Dr. Barkovich's instructions.  Those familiar with NCM know how important that is.

I did great during the scan, and while the anesthesia worked well during the procedure, the second they took it away (it was a gas), I woke right up.  I wasn't even out of the tube yet!  I guess it's good to know how quickly anesthesia wears off me before I begin having my surgeries!

The next day, which was a Friday, we waited all day for the phone to ring.  Alas... it didn't.  So, when 4:30 rolled around, mom sent an email to my wonderful dermatologist (one of the ordering doctors) to see what's up.  Dr. P. is so awesome -- five minutes after she got mom's email, mom had the report.  And.......


The small spot of NCM is still there, but has not changed.  While that was expected, it is still a blessing to know it is stable.  The rest of the scan was completely normal.  We couldn't be happier.

Now, if you remember back, one of the reasons I was having the scan was because my parents discovered that my pupils were unequal.  So, the MRI didn't do much in the way of clearing up that mystery.  But, the opthamologist didn't expect it to anyway.  So, we're not totally back to square 1, but we're close on that issue.  I suppose that may just be how my eyes are, and thus nothing to worry about.  We'll see what the doctor says after he reviews the MRI with mom.

So, this was glorious news, and mom and dad can really relax now.  We've had great appointments with NCM specialists who don't think we have much, if anything, to worry about neurologically.  We've had a full and complete scan, and know how extensive -- or how mild, I should say -- my NCM is.  Now it's time to just enjoy the holidays and prepare for surgery.

We leave 2 weeks from tomorrow...

Thursday, December 2, 2010

San Francisco

We took our trip to San Francisco at the beginning of this week, and it went great!  We left very early Sunday morning, and arrived in San Fran by 8:30 a.m.  We had the entire day to hang out and sight see, which is just what we did.  The afternoon was spent with a nice long drive through the wine country and along the coast, though I did sleep through most of it!

Monday morning, we got up bright and early, and were at Dr. Sherr's office at 8:30 a.m.  Dr. Sherr is a pediatric neurologist, and has experience treating other children with NCM.  We spent a good hour with him, during which time he examined me and answered all of our questions.  Here are the highlights from our appointment:

* My development is right on target
* He agrees I am asymptomatic, and that there is a likelihood I will remain that way
* He gave us very specific indicators to watch for, in the event symptoms do appear
* If symptoms do appear, we should be able to control it with medication or through surgery
* My NCM spot should not grow or change
* He does not think I am at higher risk for more NCM spots
* He does not foresee any life-threatening issues caused by my NCM

He gave us recommendations for when to re-image and how to manage with our local neurologist.  He also told us we could send our upcoming MRI results over to him and he'll give us his opinion if there are any changes.  And, unless symptoms appear, we should not need to go back to San Francisco for medical reasons.  Overall, a very good appointment.

A few hours later, we saw Dr. Frieden, a dermatologist, who is both a congenital nevus and NCM expert.  Dr. Frieden has a lot of experience with NCM patients, and has conducted NCM studies herself.  And, she was even more reassuring about my NCM.  She said I have "a bit" of NCM, that it is very mild, and in terms of severity, she considers it a 1 on a scale of 1 - 10.  She said I have a 90% OR BETTER chance of NEVER having symptoms.  How wonderful that was to hear.

Dr. Frieden also agreed that we are doing all the right things in terms of my nevus.  She was glad to hear that we are going to Dr. Bauer for surgery, and had no additional recommendations for us.

On another note, neither of the doctors had any ideas what is going on with my pupils.  Both agreed that since I am already going through another MRI, we may as well check everything.  So currently, we are trying to coordinate two doctor's orders so that we can schedule my MRI and re-check my brain, as well as my entire spine and a few other places.  No one is expecting any surprises, but we are still praying that there are no NCM spots detected other than the little one they found in my first MRI. 

Now, before I go any further, mom and dad discovered a big faux pas last night when they were looking at photos taken in early November.  They saw this photo of me, taken 2 weeks BEFORE they noticed that my pupils were unequal...

Ok, so this picture is probably too small for you to see it, but if you enlarged it, you would see that my pupils are unequal, even if just slightly.  Mom couldn't believe it existed before that awful night where they rushed me to the ER.  So they began to search backwards in our family photos and there is a picture of me, unequal pupils and all, at 6-WEEKS-OLD!  So they had been that way all along.  Unbelievable that nobody noticed before.

So then mom called the opthamologist first thing this morning to admit her mistake, but he still wants to proceed with the MRI.  I guess the bottom line is that something is wrong with my eyes, whether it started now or when I was born.  So we shall proceed as planned....

Wednesday, November 24, 2010

Another MRI...

Ok, so my eyes haven't made it back to normal yet - the pupils are still unequal at varying times throughout the day.  Mom checked in with my neurologist about this, and he suggested that we talk to the opthamologist again.  So we left the doctor a message, and when he called back, he told mom to bring me right in.  We weren't there 5 minutes when he told us he was ordering an MRI - another MRI I should say. 

Before I go any further, I need to tell you that the opthamologist is not concerned about what he might find on the MRI.  But the last MRI I had when I was three months old didn't scan the areas he needs to see to check for what's going on with my eyes.  If the MRI is clear, I'm not sure if we'll ever get an answer about my eyes.  It may just be how they are from now on, but the doctor said it should have no medical significance.

That being said, as mom and dad were discussing this upcoming MRI, they realized something they hadn't before.  My other MRI was incomplete.  There are three parts of the spine to scan, and only one was done.  We have no idea why it was incomplete, and when we checked in with the dermatologist, she said the same.  There's not much of a point in asking why this wasn't brought to our attention in the past, we know now. 

So, since I'm already having another MRI, we're going to re-check my brain and check the rest of my spine for any NCM spots.  Hopefully, this will be done next week.  Until then, we are praying praying praying that I have NO NCM spots other than the small one they saw in my other MRI.  Please join us in this prayer. 

Now, go and have a happy Thanksgiving everyone.  I - we - are definitely thankful for all of you.

Wednesday, November 17, 2010

A Big Scare

It has been a long, difficult, and exhausting past 24 hours.  It all started last week, when mommy noticed that my head was growing really well.  She called the doctor to see if this is normal growth, or a sign of danger, but it wasn't so drastic that we had to worry at that point.  That same day, I started a simple cold... nothing out of the ordinary... until last night.  Mid-evening yesterday, I began to get a sick tummy and was throwing up.  After that started, mommy noticed that my eyes looked funny and my pupils were not the same size.  She already knew from research that this could be related to a neurological dysfunction, and that got both her and daddy a little worried.  My tummy continued to make me sick, and one of the worst complications of NCM came to their minds -- hydrocephalus (fluid on the brain).  This is one symptom of NCM that mommy and daddy are on constant watch for, so they are very familiar with the indications, and these were three big ones.

My auntie came over to stay with big sis, and we rushed off to the children's hospital.  One good thing is that they get you in right away when it's something so concerning.  We saw several nurses, and finally the doctor came in.  It was hard to tell what she thought, but she wouldn't let mommy feed me in case it turned out that I needed emergency surgery.  That certainly didn't make anyone feel better.

An hour or so after getting there, I got my first (and hopefully last) CT scan. Dad took this picture of me going in, and I swear I was a better sport than it looks like!  It only took a few minutes and it wasn't as scary as it sounds.

The Lord was watching over me, because the CT was normal, and I do not have hydrocephalus.  What a relief for everyone!

Still, however, my pupils continued to change and fluctuate from symmetrical to unequal.  Doctor after doctor came in to check me out, and no one really  had an answer for us.  The ER contacted the on-call neurologist, and the opinion we were left with was that I probably have a viral infection causing the sick tummy and funky eyes.  Mom and dad didn't like that answer so much, but that's what they stuck with.

This morning, mommy called and got me an emergency appointment with my own neurologist.  And before we got there, she spoke with my pediatrician and my dermatologist.  Interestingly, all three of them agreed with the hospital -- it's likely a viral infection.  That seems a bit strange to us, but if so many medical professionals agree, it gives us the littlest bit of relief.  Mom and dad are supposed to keep an eye on me for the next week, and hopefully it will all go away.

So, we are very thankful that this doesn't seem to be a complication of my NCM.  However, needless to say, we will continue to hope and pray for this to correct itself, and quickly.  We would certainly appreciate anyone joining us in this effort.

Thursday, November 4, 2010

It's Getting Close!

We are less than two months from my first surgery ... 8 weeks from today to be exact.  The hospital has already called to pre-register me, and mom has already received the forms for my pre-op physical.  My vaccinations are all up-to-date, which I had to receive early to accommodate my surgery schedule.  I will get my last two shots tomorrow and one month from tomorrow, and then I'll be ready! 

Today I saw an opthamologist, at my neurologist's request.  It was just supposed to be a baseline examination, and for the most part, it was.  He dilated my eyes and looked inside them.  Overall, he considered it a "normal" examination, but he did find some pigment at the optic nerve inside one of my eyes.  He said it's common and has no medical significance, so there's nothing to worry about.  He just told mom to bring me back in 2 years, and he'll keep an eye on my eyes probably annually from there.

We are also only about 3 weeks away from my appointments in San Fransisco.  Mom and dad are really looking forward to that and hopefully confirmation that my NCM is somewhat insignificant.  I am continuing to develop wonderfully, so that is a good sign.  Mom is writing this with a sad heart, however, keeping in mind that another young boy named Ryan, from Australia, recently died from complications of his NCM.  We are sending prayers to him and his family.

On another note, our cookbook fundraiser has been a great success.  There are few books left, and mom doesn't have any of them in hand.  Our church has been instrumental in helping us sell them, and has even received many donations from the tremendously generous congregation.  The church has around 50 or so books left, and then we will be out!  Mom hasn't decided yet whether she will order more, but she will keep everyone posted.  She says that if she does, it will be after surgery.  So, if anyone missed out, let us know right away and mom can grab the books from the church.  I'm so glad that everyone loves my book.  That really helps make the project worthwhile.

Tuesday, October 5, 2010

The Books are In!

We are pleased to announce that Cooking It Forward, our fundraising cookbook, is in and available for purchase one month ahead of schedule!  If you would like your book shipped to you, please order off of this website using the "Buy Now" button on the right side of this page.  If you live in the Central Phoenix or East Valley area, mommy is willing to make delivery arrangements.  Please email us at to place your order. If you are ordering a large quantity to be shipped, please email us to arrange bulk shipping INSTEAD of purchasing through this website.  Thank you all for your support and generosity, and for helping me to receive the medical treatment I so greatly need.  God bless.

Sunday, October 3, 2010

Some Early Arrivals

How lucky!  We received notice of two early arrivals this past week.  First, the MRI disc we sent to Nevus Outreach, Inc. has already been reviewed by Dr. Barkovich, a world-renowned pediatric neuro-radiologist at UCSF who is known for detecting Neurocutaneous Melanocytosis in MRI results.  Mommy received his report on Friday afternoon, and she was very pleased when she read it.  Dr. Barkovich did NOT find any spots on my brain or spine other than what the local doctors found.  He did note that my spine has some asymmetry towards the bottom, so mom and dad will need to discuss that with my neurologists, but they are very relieved that this expert agrees I only have one small spot of melanosis on my brain.

Additionally, mommy received a shipping notice from her cookbook publisher ... the books are going to be available nearly a month ahead of schedule!  She is due to receive them this coming Tuesday.  We are all very excited to see the books and begin sharing them with the many people who supported this project and have been waiting for them. 

So, over the next couple of months, we will be busy with cookbook sales and getting ready for the 5 medical trips we will complete by about this time next year.  Our first upcoming trip is at the end of November, when we will travel to San Fransisco to see a neurologist and dermatologist who are known to be experts on the subject of NCM.  Then, at the end of December, my surgeries will begin.  We are anxiously awaiting these dates, and looking forward to getting past them.

Friday, August 20, 2010

Lots of Good News!

Where do I start?  Well, the neurologist we saw a couple of days ago did just what he said he would do: he reviewed my MRI scans with the radiologist, and he did some research about NCM.  Then he called mommy with the good news -- he is not worried about me at all.  The particular melanosis that I have on my brain is not expected to grow or develop in any way.  It should stay just where it is, which is in a place that doesn't interfere with anything.  He is no longer worried about seizures, and doesn't think I need another MRI (unless, of course, symptoms do develop).  So, just as our dermatologist said, although I have a spot, and technically have NCM, it should not affect me.  He does want mommy to take me to an opthamologist to have my optic nerve looked at, of all things! But whatever, we'll just tack that on to the number of specialists I need to see.

Now, mommy - being the hyper-control freak thoroughness queen, and daddy - wanting some reassurance, still plan to take me to San Fransisco to see the specialists out there.  It is so nice that my neurologist here is willing to learn about NCM along my journey, but my parents want to hear my prognosis from someone with direct experience.  So we're still hitting Frisco, which is a-ok because we can hopefully make a pit stop at the Ghiradelli ice cream parlor.

And that leads me to the next bit of good news.  The UCSF neurologist's office called mommy and let her know that the doctor has appointments available on the same day as the dermatologist with whom mommy already made an appointment.  Unfortunately, they won't actually book me until they get my local doctor's referral and my medical records, but they should have that next week and hopefully we'll be able to snatch up an appointment on the day we want.  That means I'll get to go before my surgeries!

Now, I mentioned a few days ago that mommy signed me up for a program where professionsals would keep track of me and make sure my development is on schedule.  Well I got to meet my case worker and physical therapist today, and they were both very happy with my development.  Even rating me on the 4-month grid (and I won't be 4 months old for another 16 days), I scored great.  So, we're off to a good start.

And there's yet one more piece of good news this week -- mommy finished my book!!!  She has been working day and night for weeks on end, and it's finally ready to go to the publisher.  So keep a watch -- they should be available in about 2 months.

Wednesday, August 18, 2010

NCM 101

I had my first appointment with the pediatric neurologist today. He was super nice, spent a lot of time with us, and is wonderfully experienced in neurology, EXCEPT on the subject of Neurocutaneous Melanocytosis.  So, when I call this post NCM 101, I mean to say that my parents did most of the "teaching" with the little bit that they learned at the medical conference last month.  The doctor is definitely a keeper, nonetheless.  Right away, he is going to sit down with the radiologists and make sure he knows what they saw on my brain and why they say it is a melanosis.  He is also going to research and educate himself about NCM, and will be calling mommy and daddy with answers to the numerous questions they presented to him. 

That being said, we did learn a little at the appointment -- some good, and some not so good.  First to the good news... he does not believe the spot I have will cause any risk of hydrocephalus.  This is one of the biggest concerns of NCM, so I am grateful for that.  He also does not believe that the risk of developmental delay is very high.  That's another plus.  But on to the not so good... unfortunately, mommy and daddy will have to watch me very closely because there is a chance the spot could cause seizures.  They would likely be "staring spell" seizures, and the doctor is not sure of how great the risk of seizure is for me.  Hopefully he will know more after he chats with the radiologist and learns more about my spot.  The other "not so good" that came up is that he thinks I may need to have more MRIs, and soon.  I'm not so sure about this, and we'll be checking around thoroughly before I go under again. 

We'll definitely be having a regular relationship with this doctor, but to get us started off right, mommy and daddy have decided to take me to see some NCM specialists in San Fransisco.  The word on the street is that there is a dermatology-neurology-radiology trio at UCSF that are the who's who on the subject of congenital melanocytic nevi and NCM.  And of course, my parents want nothing but the best for me.  So a-travelin' we will go.  It is going to be tricky trying to coordinate appointments with all of the doctors so I'm not sure how quickly we'll be able to make it, especially since we have to plan around my surgeries and expansions.  But mom got the ball rolling today and already has an appointment with the dermatologist for me just after Thanksgiving.  If the stars align, the neurologist will be available that day too.  If not, we may not get to go until after my second surgery, which is scheduled at the end of March, 2011.   

All in all, I'm doing great and am totally on track.  Mom's bringing out the big guns though and enlisted a government program to make sure I stay that way.  It's wonderful because it's free, and they will also help me with physical therapy when I am going through my surgeries.  I get to meet my case worker and physical therapist on Friday and I'll let you know how it goes. 


Thursday, August 5, 2010


It is August 5, 2010... my three month birthday!  Mommy woke me up at 3:30 a.m., but it had nothing to do with this.  It was time to eat, and it would be the last time I could eat until after my MRI later in the morning.  Around 6 a.m., she woke me up again, got me dressed, and we headed to the children's hospital.  Two hours later, the nurses took me to my destination.  They put me to sleep with a little mask filled with a gas anesthesia, and I handled it very well.  I was out for about two hours and when I woke up, I felt pretty good.  I was STARVING though!  Had myself a nice breakfast and went back to sleep.

Ok, that was the easy part.  Waiting was the hard part.  We are so very lucky to have a doctor that really cares about me, and she went out of her way to get the results to mommy and daddy before the written report comes out tomorrow.  So here are the results... the radiologist found one spot on my brain.  According to the doctor, it is "very small and very faint," and it is in or on the amygdala.

What does this mean?  Well, first and foremost, I suppose it means I have Neurocutaneous Melanocytosis (NCM).  That is what they call it when the kind of pigment and/or cells that form(s) a nevus end up on the brain or spine.  While this can be very serious, I am still very fortunate because it appears that what I have is the asymptomatic version of NCM.  The doctor said the spot is not pressing on anything or blocking anything, and because of this and its location, I should never develop symptoms or have any problems.  I will need to see a neurologist to verify this prognosis, but we've already had a second opinion from our surgeon in Chicago, and he agrees that we should not worry about this spot.

All in all, this is good news. Our wonderful doctor is working hard to find us a neurologist who knows about NCM, and to get us an appointment right away.  So, while this is not the result we were all hoping for, it is the next best.  Thank you to everyone who sent happy thoughts and prayers.  I am so lucky to have all of this love in my life.  

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 ....