Wednesday April 5

We are all coming home Friday!!!!!

It’s been a busy week, G is doing his regular therapy sessions, getting assessed on the amazing improvements he’s made over the last 5 weeks, getting prepared for changes when he gets home, getting the equipment he’ll need at home, setting up outpatient therapy for him, and doctor visits…and I still need to load up the car and get gas. 

His left arm is near normal, he has some fine motor skills to work on and some strengthening of his shoulder, but wow!

He is walking with a walker and two AFO’s (braces) to keep his feet from dropping, and actually walked to his room using a cane today. He also climbed 2 flights of stairs and came back down. 

I can’t say enough thank you’s to the staff here for their kindness and knowledge and patience, the many friends and family that sent cards, well wishes, prayers, financial help, and visits, my daughter M who has taken care of not only herself, but all our pets, and the house, and her 2 brothers (and others) for checking to make sure she’s ok, and many others. We are truly blessed by you all. I may update a time or two over the next few months, but I may not 🙂 

Monday April 3

G has been working very hard, and making great improvements. 

He got fitted and was able to use the Ekso, a lower body exoskeleton that assists his walking. They have also been using the E Stim on his legs, especially working on getting his flexor muscles in his feet to work. He can now flex his right foot and lift his toes up a bit. He got fitted for a brace for his left foot and may have to wear that for a while. 

We were informed this morning that insurance thinks he no longer needs the inpatient care, so we may be coming home this Friday instead of next. I’m actually really excited to get home. 🙂 and see my other kiddos. 

Monday March 27

Today G was encouraged to start using his walker more, which he’s super happy about. This will build strength, help the clonus, and help him with his balance. He needs a bit of help about 20% of the time when using the walker. The clonus is still improving in his left leg and darn near gone in his right. He worked on stairs and does a great job with that. The walking wears him out, so the additional time with the walker should help his endurance.

He also went bowling today, and did great and I think had a good time. He has had a chance to talk to several people here and hear their stories and how far they’ve come, and to share a little about how far he’s come in a month.

Oh, we also got to meet one of the Harlem Globetrotters, so that was kind of exciting. When I explained who it was to I-, she said “I can’t breathe, I’ve never met someone famous before.”  🙂

This is PT making him squat to reach and grab a ring and then place it on the post. This works on his balance, strength , and control.

Friday March 24

G ended the week with new therapist as his OT and PT are both on vacation. It’s interesting to see the differences in therapist and what they are comfortable letting him do, especially since they don’t know what he is and isn’t capable of. 

G is working hard to get better so he can go home. He’s been practicing walking with the walker a lot more and is able to take steps to get into and out of his chair instead of pivoting on his right foot. He also doesn’t want any help unless he asks for it (so back up mom). 

OT is concentrating on his left shoulder and using exercises to strengthen those muscles. 

He used this special elliptical machine that was designed here at Madonna, he wasn’t very hip on using it because “it’s cardio”, but it is used to help his gait when he walks and he admitted it was a good workout for his legs. 

Wednesday March 22

G continues to amaze me with his hard work and determination. He stood for over 20 minutes today, walked over 200 feet, went 15 minutes on the peddle machine… and that was just PT, he also learned how to get himself up if he falls, kind of a seal crawl to a stable support to get himself up. I adore his PT, the therapists here (and all the staff) really try to make connections and work with patients strengths.

OT worked on his arms and especially his shoulder muscles, his muscles that hold his shoulder to his ribs are weakened and he really needs to be aware of his posture and of Squeezing his shoulders toward his spine. His left shoulder muscles are very weakened and the work to get them strengthened will be twice as long as it took for them to weaken, so I get the task of reminding him to sit/stand straight. He also got to use the armeo (video game arm strengthener)

G can now get himself around in his wheelchair, although it is quite a lot of effort on his part. The clonus is slowly lessening, his strength is slowly improving, and he is beginning to use his muscles on his left side, lessening his dependence on his right arm and torso.
His spirits are very good, he gets irritated at being bothered every hour, but puts forth 110% every therapy session. And the nurses comment often at how polite he is (I think the therapist see more of his true self, and I love it).

His pain was around a 3-4 on average today. We put in a request last night for a scheduled pain medication dispense overnight, but the Dr won’t do that. He wakes up so stiff and doesn’t sleep well. His nurse last night woke him (per his request) at 10, 2, and 6 AM, and he slept great and woke much less stiff, but he will need to request this each night with the nurse and possibly set an alarm. He does much better during the day not using the narcotics, but seems to really need them overnight.

We are counting down the days (23) and are so grateful that he was able to come here and is making such progress.

Monday March 20

Estimate for G’s dismissal is April 14. Less than a month 🙂 They are thinking he will be able to go home with a walker and will continue therapy on an outpatient basis. We will be meeting tomorrow to hear recommendations on adjustments we may need to make to the house. 

He continues to improve daily, and is working really hard on strengthening his left side. His clonus also continues to get better each day. He walked 244 feet today with the walker, and is able to get himself into his wheelchair, put on his own shirt, and put on and tie his shoes. 

He went on another outing today to a nearby lake and got some dessert. He also got to use the left arm video game device and showed improvement over last time. 

Saturday March 18

The girls and I made it into Lincoln about 4 AM Friday morning and we were tired. M was so happy to see her brother and to get to spend time with I- and I. It was sad to have to say goodbye already this afternoon. 

G had a busy week with therapy and I really noticed improvement after being gone for a couple of days. His clonus seems to be really improving. He is returning to his ornery self which is nice to see. 

In addition to his sister visiting he also had his dad here for a little over a week and his grandpa here for a few days. I think he enjoyed seeing everyone. 

He continues to gain strength and control daily, it is truly amazing. 

Tuesday March 14

We woke up to this:

It was beautiful!
G didn’t sleep very well last night due to pain in his head and cervical spine. Then he had a super busy day.  

His PT used weights on his ankle to see if that would help the clonus and it seemed to, in addition she thinks it helped his foot placement. She also had him use a rocker board to help him shift his weight from leg to leg and work on the co-activation. 

OT used the electrodes on his arm again with the FES bike and he did the ADL (adult daily living) thing, she’s a hard nose 😉 making him figure out ways to do for himself. She had him try to tie his shoes, he is not able to, but she makes him try. 

I- and I drove back home this evening so I can attend my classes. We will drive back up Thursday night. 

Monday March 13

Back to work on Monday. G worked on his left arm and shoulder today. They have a computer program and arm thing that gets measurements for his range of motion and then uses that with a video game, so he has to push not only his range of motion but also his control of movement. The set up took a while, but his ranges are all stored for next time.

He also continues to work on his foot placement, leg strength, and that darn clonus. He hasn’t figured out how to separate the activation and deactivation of his hamstrings and quads, so that also contributes to the clonus. When he drops his leg (or tries to turn off the muscle activation) his leg very slowly lowers to the ground whereas normally it would just drop. His PT said she talked to some of her colleagues who work with spinal cord injuries about the co-activation because it is way more common in spinal cord injury than brain injury, so she may have some different ideas later this week.

Sunday March 12

A day of rest!!