Sam is just amazing!
My darling boy has been on the Rehab Unit for 10 days now and is making so much progress and his spirits are so high, it's just amazing to witness!
He has Occupational, Physical and Speech therapy twice each day, a morning and an afternoon session of each. He's working so hard that he's finally actually sleeping normally again! He's been getting up out of bed every day this past week into his new wheelchair and has gone outside in both rain and sun, visited the playroom and gone to see the swimming pool too =) He's loving his newfound mobility and has been spending more time out of bed during the day than in it.
He met the goal of finally having the cuff on his trach tube completely deflated during speech therapy. And is now up to 9 minutes of deflation. The goal now will be to increase the amount of time the cuff is deflated until he can tolerate it constantly. At which point he will be switched over to a cuffless trach tube. It's really the first step to weaning him off the ventilator. In case I haven't mentioned previously, deflating the cuff on the trach tube is what allows Sam to regain the use of his voice (allowing air to flow across his vocal chords). His speech therapist discovered that giving Sam something interesting to read ~ in his case, she's been printing out stuff on dragons! ~ he doesn't pay attention to the clock and focuses just on reading aloud and is making huge leaps forward.
Sam is eating solid food every day now! At each meal! It's only a few bites per meal at this point, but it's better to take it slow and easy and work his stomach back up to tolerating digesting solids again. The eating is one of the more difficult tasks for Sam because his stomach has been so touchy with all the changes they've put him through trying to get him the calories he needs daily. He hasn't really felt hungry, but with both me and his dad reminding him that eating real food is so much better for him than being fed continuously through a tube he pushes forward (even if he does complain he still eats something).
Every day has been working toward some form of progress or improvement over the previous day, and Sam has been meeting those goals and exceeding them and amazing everyone who works with him =) The biggest achievement so far happened on Thursday morning ~ Sam can shrug his shoulders! He was so proud of himself. He was showing off to everyone who came to see him =) Big ol' smile plastered across his face!
Thank you all so much for the good thoughts/prayers/wishes/hopes you've been sending to Sam and my family. There is nothing that would ever be enough to repay that in my mind.
He has Occupational, Physical and Speech therapy twice each day, a morning and an afternoon session of each. He's working so hard that he's finally actually sleeping normally again! He's been getting up out of bed every day this past week into his new wheelchair and has gone outside in both rain and sun, visited the playroom and gone to see the swimming pool too =) He's loving his newfound mobility and has been spending more time out of bed during the day than in it.
He met the goal of finally having the cuff on his trach tube completely deflated during speech therapy. And is now up to 9 minutes of deflation. The goal now will be to increase the amount of time the cuff is deflated until he can tolerate it constantly. At which point he will be switched over to a cuffless trach tube. It's really the first step to weaning him off the ventilator. In case I haven't mentioned previously, deflating the cuff on the trach tube is what allows Sam to regain the use of his voice (allowing air to flow across his vocal chords). His speech therapist discovered that giving Sam something interesting to read ~ in his case, she's been printing out stuff on dragons! ~ he doesn't pay attention to the clock and focuses just on reading aloud and is making huge leaps forward.
Sam is eating solid food every day now! At each meal! It's only a few bites per meal at this point, but it's better to take it slow and easy and work his stomach back up to tolerating digesting solids again. The eating is one of the more difficult tasks for Sam because his stomach has been so touchy with all the changes they've put him through trying to get him the calories he needs daily. He hasn't really felt hungry, but with both me and his dad reminding him that eating real food is so much better for him than being fed continuously through a tube he pushes forward (even if he does complain he still eats something).
Every day has been working toward some form of progress or improvement over the previous day, and Sam has been meeting those goals and exceeding them and amazing everyone who works with him =) The biggest achievement so far happened on Thursday morning ~ Sam can shrug his shoulders! He was so proud of himself. He was showing off to everyone who came to see him =) Big ol' smile plastered across his face!
Thank you all so much for the good thoughts/prayers/wishes/hopes you've been sending to Sam and my family. There is nothing that would ever be enough to repay that in my mind.