The Second Visit

Pacific Sunset Outside the Golden Gate

Well Joshua's appointment went very well and we will be returning in January for another follow up visit. They will also be scheduling a full spine MRI and brain MRI, hopefully for the same day as his visit. We were very encouraged by our visit yesterday with Dr. Cordoro. She and her staff do an amazing job of helping us understand everything and putting us at ease.

Dr. Cordoro (left)
She thinks that he'll be a Navy Seal someday.

The MRI will be looking for a condition called Neurocutaneous Melanocytosis (NCM). This is where there are melanocytes (spots) somewhere in the central nervous system that can cause a variety of symptoms. Joshua's risk of having NCM is less than about 5% and his risk of having any symptoms if he does have NCM is about 40%. Dr. Cordoro says that he is kind of in a grey area as far as the risk of NCM goes but feels that an MRI in Joshua's case would probably be a good idea. This will give us peace of mind as parents and will give the Dr.'s a baseline to go off of in the future.

Golden Gate from the Presidio

We are totally trusting God that He has marked our Joshua in a special way for His glory. I am confident that he will remain healthy and strong and live a long fruitful life but even if he does face challenges in the future, God has a specific plan for his life.

Rachel and I are really enjoying being able to get away to the city about every three months too. Yesterday we went to Fisherman's Wharf for the obligatory clam chowder in a bread-bowl and drove by the Golden Gate on our way to look at the house where her dad grew up.

Even though we have Joshua with us,it feels like it's just the two of us and it gives us time to get to know each other as husband and wife and not just "mom and dad". We are looking forward to the next trip in January!

Pacific Sunset from the Presidio

Da Beard

Joshua has decided to go with the beard look. It's a little patchy but where it is coming in, it's filling in quite nicely. Having the hair grow up the side of his face might be an issue but it does give him kind of a Wolverine look though.

We have our next appointment scheduled for October 15th out at UCSF and are interested to see what they have to say about doing an MRI. He was born with 7 satellites on his legs, back, and head and we have now crossed the 20 satellite risk threshold with about 33 and counting. It does seem like he gets another one about every couple of days and it's possible that he could have hundreds of satellites in the next few months. 

At 3 months old, his personality is really starting to come out and he is really trying to catch up to our other kids. He loves his "bouncy seat" and is already pretty mobile, scootching across rooms at the speed of a fairly fast turtle. He is an amazing sleeper too. He goes down at about 6:00 or 7:00 and sleeps until about 6:00 or 7:00 with one or two feedings during the night. And he can sleep through anything! We can have all of our kids in our room, jumping on the bed, screaming and laughing, and he doesn't even hardly stir. 

It is so much fun to watch our children grow through the different stages. And to get to do it again for the ninth time is a huge blessing.

A Day in the City

God is good! Rachel and I took Joshua over to UCSF yesterday and were very impressed with the experience. They really put us at ease as far as Joshua's condition goes. His doctor is Dr. Kelly M. Cordoro and we also got the privilege of meeting with the world renowned Dr. Ilona J Frieden and another pediatric dermatology doctor who happened to be visiting from Spain. What I was really amazed at was how many doctors, interns, and students could fit into a room the size of a large closet. I think there were 11 people total in the room at one point.

UCSF Dermatology Clinic

As far as Joshua's condition goes, he is at a lower risk for most of the concerns that we had. The size of the nevus on his chest was measured at 17cm x 14cm and the risk of melanoma is more significant if the measurement is 20cm or greater. They said that he is also probably at a lower risk for melanoma because of the "speckled" appearance. Most nevi of this type are more solid in color and are generally thicker. Because his is not a thick, dark solid color, there is a chance that the lighter areas could even fade a little over time and may not grow any hair. 

Another possibility was the chance of him developing or having neurocutaneous melanosis. This is where there are nevus cells on the brain or spinal column and if he were to have 20 or more satellite nevi, they would be more concerned about this but as of right now, he only has 7, so he is in kind of a gray area where they could go either way on an MRI. 

We are going to, as Dr Cordoro put it, "watch Joshua like a hawk" and do monthly visual and physical exams of his nevus to watch for any changes. We will go back in about 3 months and about every 6 months after that. I don't mind taking a road trip to SF every 6 months at all. Especially if the weather every visit is like yesterday's. It was so nice that Rachel and I took a ride down Lombard St. (in the 15 passenger van) and grabbed some chowder in a bread bowl at Fisherman's Wharf.

On a clear day, you can see forever.

UCSF It Is!

Well we have decided to go with UCSF and got the referral process started yesterday. The pediatrician in the hospital told us that Stanford would be our best choice for Large Congenital Melanocytic Nevus but when we did some research and talked to people that are on the same journey, we found out that UCSF is one of the top 2 nevus clinics in the country and Stanford really isn't even on the map. 

The referral process can take a while and we are anxiously waiting to meet with the dermatologist so that we can have some clearer information specific to Joshua and what our options are to help him.

The internet never ceases to amaze me as far as the number of resources that we have at our fingertips for pretty much anything. One resource that we found that has been a big help in helping us understand Joshua's CMN better and connecting us with families around the globe that have children with CMN, is the site http://www.nevus.org/. The people that we have met though them already are extremely helpful and knowledgeable and have helped put us at ease with Joshua's condition.

One of the things that they have on their site is a map that shows how uncommon large CMN is and soon there will be a green dot over Modesto.

A Journey's Beginning

Our son Joshua greeted the world at 2:00 on 6/15 and is a Davis for sure! 

He was born weighing in at 8 lbs. 4 oz. and is just as beautiful as all of our other children. He was also born with what the doctors called Large congenital melanocytic nevus . This is a condition where a baby is born with a large "birthmark" or mole that covers a significant part of their body and in Joshua's case, it covers his entire chest area.

He has his first well baby check on Thursday and we will most likely be getting a referral to UCSF or Stanford. We will be requesting Stanford because they are supposed to have the best pediatric care for conditions like Joshua's. Along with the large area on his chest he also has "satellite" moles on other areas:

On his cheek -

On his back -

And on his leg (small mole inside of a large mole)- 

I know that Google isn't the best diagnostic tool for novice M.D.'s like me, but as a parent, you can't help but want to know the possible effects and treatments for this and there is a HUGE range. I did find a blog (http://checkingbackwithzac.blogspot.com) that journaled one family's journey and are praying that Joshua's is easier and less complicated.

Some of the things that I did find out about this type of Nevus is that the affected skin has little or no fat underneath, has no sweat glands, and is very fragile and can be difficult to heal. It can also get very dry and itchy.These areas are permanent (unless God heals him) and will grow in proportion to Joshua's growth. He may also have "satellite" moles that appear later. We will need to be, as our doctor put it, "hyper-vigilant" to make sure that none of his moles start to show signs of malignant melanoma. There is a higher risk of melanoma in direct relation to the size and location of the moles.

We know that God is in control and He works all things out for His glory. This is going to be an interesting journey to say the least.