John’s adrenal gland function has been a major concern throughout this entire journey. He has been on prednisone in various forms ever since he was born. Every time it was ordered, the doctors were hesitant because there are a lot of risks in using this drug in kids his age. Essentially, if it is used in high enough doses for long enough periods of time, the adrenal glands can essentially shrivel up and die, and may never function again at all. This can cause serious issues down the road with growth, fighting infection, sex hormone production, in addition to a laundry list of other things. 

 

We are thankful to report that John is doing so well we’ve officially been able to wean him off his oral prednisone, and for the time being he only remains on a prednisone nebulizer. 

 

This morning he had lab work to check his hormone levels and determine if his adrenal glands are working at all, and to what extent. 

We are crossing our fingers for normal results in hopes of avoiding any more medications or secondary problems that must be dealt with. 

Regardless of what the labs say, he continues to make great strides and we feel confident in our decision we made months ago to remain on prednisone, in hopes of avoiding a trach. 

 

We should have results later this week. 🤞🏼

As far as everything else goes- it is all moving in the right direction. 
He continues to gain weight on the normal calorie formula.
He is learning to breathe out of his mouth more each day.
He can almost sit up! 
He’s still so happy almost all the time. 
He’s never been food motivated because he’s always working so hard to breathe- but we are making slowwwww progress in terms of purées. 

Each day he’s at home is a victory and we are so thankful for his progress. Hoping this recent lab work is another bullet point on the answered prayer list.