We have been here in Brisbane for 10 days and it has been full of ups and downs… but mostly good news as we went from doctor to doctor with Naomi. The MRI was a long appointment, but all went well and they were able to get a very clear MRI of Naomi’s brain and spine. We are very thankful for the pediatric neurologist, Dr. Kate, and the team of doctors that she brought together to help Naomi. Dr. Kate went over the MRI results with us. Naomi does have NCM (Neurocutaneous Melanocytosis), a complication of multiple congenital nevi (multiple birthmarks), a very rare condition. The MRI showed two very small spots of extra melanin on the brain, and a possible extra spot behind the optic nerve. There are no extra melanin spots on her spine! She also had a EEG which showed no problems.
Dr. Kate told us that Naomi is developing wonderfully at 6 months old! So thankful to hear that! And all we can do now is monitor Naomi by watching for two things… measuring her head, to make sure the extra melanin spots, aren’t blocking the fluid flowing through the brain… and multiple headaches or sudden movements to indicate seizures. She said that the next two years will be the mostly likely time in Naomi’s life that something might develop because of her NCM condition. But 80% of children do not have any side effects from NCM. Please pray with us… pray that Naomi is in the 80% bracket.
So we will need to return to Brisbane or Boston (which ever we are closest to) once a year so that Naomi can have a checkup MRI. The doctors will monitor the extra melanin spots in the brain to make sure nothing has changed. Naomi will also see an eye doctor each year to make sure her eyes are looking good. And she will need to see a dermatologist each year. The dermatologist that we saw here told us that there is no need to have all of Naomi’s birthmarks removed because whether or not they are there, the areas will still have to be monitored for skin cancer. Although there might be one or two birthmarks that she may want removed for cosmetic reasons in the future.
The doctors here have been so very helpful. They have given us their email addresses so we can email with questions if anything comes up while we are in PNG over the next year. The dermatologist said to send photos of Naomi’s birthmarks if any of them change… and she can take a look. In the meantime Naomi should wear spf50 sunscreen and a big hat and sun resistant swimwear.
We are so thankful for Dr. Kate who told us to just enjoy watching Naomi grow and let us know that her and the other doctors will do the work of monitoring her health as we return each year. We are also thankful for the Ronald McDonald House and the staff here who have been wonderful as we have worked through the last 10 days. God has provided for us in many ways here… family times at parks, yummy food, an old friend and new friends to visit and beautiful fall weather as we enjoyed the city of Brisbane on the river. And of course Jonathan is quite happy with his new boomerang… which he can throw quite far… and hasn’t quite figured out how to get it to come back to him.
We fly back to PNG on Monday, May 8th, and look forward to getting into a good routine as a family… knowing so much about Naomi’s condition and knowing we have doctors to contact with questions is a great encouragement to us. But most of all knowing that God has placed these little spots or some people call ‘angel kisses’ on Naomi for a reason is a great comfort to us… we know that God is taking care of Naomi and us as a family!