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 joshua@journeyswithjoshua.com 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.

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.

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.

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. 

   

The MRI

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.  

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. 

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?