By the grace of God, we haven't had many things to update on in the recent months. We have enjoyed every minute of our "normal" life- playing with big sis, checking in with our doctors, fighting off normal baby illnesses, and watching John grow and learn. 

Overall, he continues to make positive progress in every area. 
He started back in physical therapy to help build up some strength he lacks as a result of so many hospital days. He is so close to crawling, although is fighting so hard to just start walking! 

His breathing gets a little easier each month. His suction machine is still our best friend (and his worst enemy) as we still have to suction him many times a day. However, his growth has made it easier to keep his nose clear so he can breathe and eat. As he continues to grow, he will become better at mouth breathing which will also help. 

We are due to check in with his plastic surgeon in the new year. We know he will need additional reconstruction on his nose way down the road (like when he's 15), but it is our hope that we can limit any other surgeries until then. 

He is holding his own on the growth chart and is sitting right around the 40% for both weight and length. 

We are still needing the help of his G tube on some days, but he is drinking the majority of his milk on his own, far more than he ever has. He had his swallow study repeated this week, and unfortunately we didn't get the results we wanted. Although he still did not pass, he ability to swallow without aspirating hasn't changed since May. We will continue to thicken his milk to ensure we don't end up with aspiration pneumonia again. He tolerates his thickened milk but LOVES real food. He will eat anything we put in front of him and after months of stressing over a possible oral aversion- this is a huge huge answered prayer. 

We finally had an appointment with endocrinology this week and couldn't have gotten better news! John was born with 2 midline defects (his nose and front tooth) which often is seen with pituitary and/or thyroid function. This has been a concern since he was born and we've been waiting for the right time to complete all of the lab work to check on this. After reviewing all of his images and labs, the doctor can confirm that John was NOT born with any endocrine issues. An even bigger answered prayer- the near complete adrenal failure that we had after months of oral steroid use is completely RESOLVED. His adrenal glands have officially rebounded and are functioning normally, leaving us with ZERO concerns from an endocrinology perspective. 

It is unfortunate, but also a good sign, that John has been sick almost every week since big sis started school back in August. It isn't ideal, but the fact that he's remained home, on minimal medications, and off oxygen tells us that his breathing has improved dramatically. 


There's been many stages to this journey, and we've had to modify our lives in ways we could have never imagined. Today, I had a huge smile on my face when I put the feeding pump in the closet. We are having to use his G tube so little that the feeding pump just isn't needed much anymore. It was his lifeline for months and was the only way to keep him fed and growing when he couldn't drink anything on its own. The days caring for a medical kiddo can be so long and hard and it's easy to get discouraged, but every few months I have a moment like this- and I'm reminded of just how far we've come.  

As we approach the holidays, the new year, and John's first birthday shortly thereafter, we have nothing but gratitude for this past year. John has defied the odds so many times, fought harder than any baby should have to, and done it nearly every day with a smile on his face. 
We are so proud to be his parents.