Hello, friends & fam! 

Here we are again, a few more weeks down the road. I've held off updating until Noah had his follow up appointments this week so that there'd be new news.

Except that there isn't...not really, as far as his preferred (independent) lifestyle is concerned. The stall, of course, has positive and less positive sides.

For one, Noah's weight clocked in at 132.2 pounds this past Monday at his doctor's office visit. Right the heck on! That is a grand total of 24.5 pounds gained since Noah was at his all-time low mid-June. His appetite has stayed solid and his mouth and throat sores minimal, so the eating is not only possible, but highly likely nearly every day. 

Also, the switch to the new treatment seemed to go off without a hitch. This is the first infusion he has had in which he didn't have some sort of reaction during the session. Supah! The subsequent treatments are injections, which means we don't have a five-hour round trip to Boston for each one. Yay!

ALSO, the swelling and pain in his joints has mostly been absent since Noah has been out of the hospital. That makes things a bit nicer as well--the rheumatologist was quite pleased with that. Noah had some x-rays done of his hands and feet, which showed some thickening of certain bones in his feet, but not so much that he isn't able to achieve "normalness" once the Crohn's is in remission.

These past couple+ weeks, however, the unwelcome presence of severe stiffness in his leg muscles have landed him mostly back in the bed, walking with a cane, and the necessity of elevating his feet and legs when he's sitting. This is problematic on a couple of levels because a) he's in pain all the time, b) makes it way more difficult for him to be independent in his home environment, and c) takes a toll on his emotional stamina.

Both doctors (Crohn's specialist and rheumatologist) we met with this week do think that this stiffness is a side effect of the prednisone (steroids) that Noah has been on since the hospital infusion. His regimen of that med (the steroid) is finished as of today, so now we are in a waiting period for the prednisone to leave his system in order to parse out if that is the cause of his leg troubles. This evacuation can take as few as several days and as many as four weeks as his body gets used to not having the steroid around to help reduce pain & inflammation. In addition, it takes several weeks for the new treatment to take hold, thereby reducing these symptoms. So, we hover and *hope* that his muscles don't get more stiff or travel up past his hips. Fingers crossed!

Ah! One more on the positive side: His insurance covers both chiropractic care and physical therapy, so we are in process to get those things going to do as much as we can to help Noah feel as well as he can. The news of his progress in getting the Crohn's into remission is the news we'd like to give as soon as possible!

So, onward and upward, as they say--although the weight going up is a thumb up--and the pain going DOWN is the other thumb up. We'll get him more mobile in all the ways in which we can while we wait for the meds to cycle through his body. Meanwhile, Noah is nice and cozy up in his hut--we fired up the wood stove (sorry;)) this week, and it's quite delightful.

Thank you all for keeping track of Noah's progress! It's so nice to feel this connection in these days of physical disconnect. We hope you all are doing as well as possible! 

Hugs, 
Noah & Mae