Today we celebrate John’s first FULL MONTH AT HOME. 🥳🥳 

 

Despite battling a cold this last week, we’ve been able to manage things at home and finally live a semi-normal life. 

We had a much anticipated appointment with his ENT doctor today and are happy to report that things are (for the first time ever) somewhat stable. 

 

His overall growth has been an instrumental in opening his nasal passages to allow for easier breathing. He continues to gain weight (16 pounds!!!) and is nearing the 40th percentile!!!!!! His nasal passages are increasing in size like we want them to. 

 

More good news: the hole in his septum is closed. The extensive scar tissue is his nose is stable, and doesn’t seem to have increased in size in the last month. There was no inflammation, which was a concern given that we’re weaning him off of prednisone. The possibility of him needing a trach, although still present, is relatively low at this point given his growth and stable scar tissue. 

 

Everything is moving in the right direction and it is our prayer that we can continue on this path of supporting his growth and keeping him healthy! 

 

We know he will need additional procedures in the future- but these will be planned interventions that will be proactive and will hopefully help improve his breathing (rather than a reactive response to sudden respiratory distress like we’ve dealt with in the past…) 

 

It’s hard to put into words how thankful we are to finally have gotten him to a decent spot, and we are so fortunate to have had him at home and spend time as a family. 

 

Endlessly thankful for this contagious smile and the rolls that come with it. 🥹