They just replaced the patches a moment ago and they will now be replaced every Saturday. Wouldn't you know it ... they put the patches on and the storms have subsided! Isn't modern medicine incredible?
We just finished Aidan's bath and all I can say is there is definitely a learning curve involved when your active 28 lb. little boy is now 35 lbs. of dead weight. I thought getting ready to go somewhere was a process ... this is much more involved than that ever was! Between lifting/carrying him, supporting his head while bathing, changing his trach ties, and putting on new clothes, I was just about worn out! Throw in suctioning the trach when he was coughing and it was a massive production. I know this is something Erin and I will have to figure out, but today it was a lot more frustrating than I had expected.
Tomorrow we have yet another Reiki practitioner coming in the afternoon. There is no "scheduled" therapy on Sundays, so I gave them the OK to come. We can still do our own therapy session with Aidan, and will likely do some range of motion work before they arrive.
Before I go, I will say that the therapists we saw today were very pleased with the range of motion Aidan has right now. He has almost full motion in both shoulders and his hips. His knees and elbows are also in good shape. His wrists are pretty good, but his ankles are very stiff. There are several possibilities for treatment of his ankles, including standers and serial casting (with or without Botox (yes, that Botox)). I am sure they will have a more significant plan of action for us come Monday.
He also has been coughing a lot more. He is swallowing some, but we will wait to see what Respiratory Therapy says about when they will start working on getting his trach out.
With that, I believe we will call it a night.
--Russell
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