Merry Christmas to all our Family and Friends!
We have enjoyed many celebrations of Christ’s birth this Christmas as we have the privilege of celebrating in Massachusetts with Beth’s immediate family and church family. We have enjoyed the Christmas Cantata, gingerbread house making with church friends, Christmas caroling, Christmas tree decorating and cookie decorating with Grandma and Grandpa, and of course the much anticipated Christmas Eve and Christmas Day service at our church. We are thoroughly enjoying our Christmas here with family and friends, as we can enjoy the beauty of the snow as we bundle up… and we don’t have to sweat as we sing Christmas carols! We are so thankful for the birth of our Savior so many many years ago, which God sent to save us… and allow us to live an abundant life in Him!
Also, we wanted to share with y’all an update on Naomi’s birthmarks as we try to find out more about the possibility of her having NCM, (Neurocutaneous Melanocytosis) , melanin on the brain, a complication of multiple congenital nevi (birthmarks on the head). The doctor said that in 80 % of NCM cases the child will live a normal life and in 20% of the cases the child can have side effects, like seizures.
Nov 30th we were able to go to the Boston Children’s Hospital to see a Pediatric Neurologist. We were quite concerned when we left Boston because the doctor told us that they had concern about her eyes not aligning and a weakness in her shoulder and hips. We also needed to get another MRI done because the first one was not clear enough for the doctors to see if there is any extra melanin on the brain.
Dec 15th in Boston, Naomi was scheduled to have a “feed and wrap” MRI. But this was canceled after they found out that Naomi sometimes spits up after eating. The MRI was rescheduled as a sedated MRI for Jan 31st. But we would really like to have it done a lot sooner, since we plan to leave MA to head to Nova Scotia (and on to PNG) on Feb 2nd. So now we are waiting for the Boston Children’s Hospital to call to reschedule this MRI.
Since our appointment in Boston we have seen a Pediatric Physical Therapist who assured us that Naomi’s hips and shoulder strength are developing normally for a two month old. She does need more tummy time to work on her muscles, lifting and turning her head, but this is normal for this age of a baby. We have also been reassured that her eyes are great and there is no need for concern!
When we were first told about the possibility of Naomi having NCM, some our first questions were “How will this all work out for us to go back to our ministry in Papua New Guinea?” God has opened so many doors for us and gave us so much grace and peace as we make steps to return to PNG. And it is very amazing how God is making all this happen against the backdrop of the Christmas season and the story of how He sent His own little one to earth. God’s love is amazing and the things He does are glorious. He is showing us that in a unique way this Christmas season.
Please pray that Boston Children’s Hospital will call soon with an MRI appointment for Naomi. And that the MRI would show no extra melanin on the brain. But if it does, that she would fall in the 80% of those that have no affects from this condition. Thank you!