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.