10 lbs!!!

Josiah weighs exactly 10 lbs. now! Although he is still very small, I am excited that he has finally reached 10 lbs. Our pediatrician was not overly concerned about Josiah's weight. He is way below the charts for a typical baby his age, however he is at the 50th percentile for children with NS. Josiah actually plotted above his normal curve for weight/length at this appointment. So we will continue without the NG tube!!! :)

Lately Josiah's eyes have been shaking when he focuses on things (called nystagmus). Before it was a very rare thing that Josiah would do, however now he is doing it more frequently. This could be related to NS however there are other more serious things that can cause it. We will see a neurologist and an ophthalmologist for further evaluation. So now Josiah will be seeing a total of 5 different specialists (urologist, cardiologist, geneticist, ophthalmologist, and a neurologist).

I was encouraged by Josiah's weight. However, I feel very discouraged by his nystagmus. I cannot imagine what it would be like to have your eyes shake every time you focus on something. I will try not to worry about it until I actually know the cause. It seems like we will just finish climbing a hill and find ourselves standing at the base of another mountain. We just keep on hiking.... one appointment after another.

Thank you, thank you, thank you for all the prayers and love!!! We have amazing family and friends who have been right by our side through everything!




Iylah lined all her babies up and covered them with her "Mimi".

Josiah at his cardiology appointment.

Josiah admiring is big sis!