NAM Part 1 & Elijah Pics with the Fam

I learned about NAM (nasoalveolar modling) about a week or two before Elijah arrived, and Nate and I got really excited about it. As I called the 3 cleft centers in Indiana, I was very discouraged to learn that Indiana does not have a specially-trained orthodontist that can place and adjust the NAM. I was told by a few people that special taping does the same job according to a recently published paper which looked at unilateral clefts (**and not bilateral which Elijah has**), but I had seen the progress and still wanted to pursue it. 

Grandma Evans

Grandpa Evans

I reached out to NYU where NAM was invented by Dr. Grayson to see if they knew where the closest NAM-trained orthodontist would be located to Indiana. Their program director Margy immediately got back to me and told me that they have the support of the National Foundation for Facial Reconstruction (NFFR) which helps families without local access to NAM get to NYU. Margy had already reached out to NFFR's executive director Carolyn who, while we were speaking on the phone, emailed her back and told her to have me contact her. Margy also told me she would have NYU's speech/feeding therapist and nurse practitioner give me a call later, which they did to give me more information and support. 

Grandma Eells

Grandpa Eells

The NYU/NFFR team were a light in a morning that was pretty dark for me. In fact, when Margy called, I had been on the phone crying to Nate about how discouraged I was about the cleft care. God heard my cry. We agreed the best plan was to wait until Elijah was born, have him evaluated by Dr. Flores, and have Dr. Flores determine if NAM would be beneficial or not for Elijah. Margy and the NYU team were another group that raved about Dr. Flores.

Aunt Hannah

Later that day, Carolyn from NFFR called and told me that they would provide us Southwest vouchers so that we could travel back and forth to NY for the 5 months it would take to have the NAM placed and adjusted should we go that route. Not only that, but they also had an apartment right across from center where we could stay for free if we needed to stay overnight. Nate and I were overwhelmed. We knew this would be a long and hard process if we went with the NAM, but we were thankful that it would be available to us. 

Aunt Christina

Uncle Patrick

Fast forward a few weeks, we brought Elijah home and met with Dr. Flores (see his work here) and his team almost 2 weeks ago. Dr. Flores was wonderful...very calm, reassuring, and confident. We discussed NAM and NYU with him, and he was very excited about the possibility of us pursing NAM through NYU. When I point blank asked him if it was worth it and if it would make a difference, he said yes. (Another answered prayer...that morning I was nervous that we wouldn't have clear guidance about whether or not we should pursue NAM so I asked God to give us a clear answer at the appointment.) Fast forward to this past week, and we were of to NYU for the first time to have NAM placed. I will post again about the first trip shortly.

Naptime with Daddy