Tuesday, May 19, 2015

A day off

After a very busy couple months, today was a breather. The kids and I had a day of nothing to do. We were having some electrical work done at our house so we were without power for much of the day. It just gave us an excuse to be out of the house, go for long walks, and play at the park. It was delightful. 

I was happy to finally get some pictures of Andrew. He's been drawing the short straw lately in the attention department. Someday I hope even to be able to get a video of him... Maybe when his big sister isn't around.

Monday, May 18, 2015

Constraint therapy is done!

Today was the last day of constraint therapy at KKI. I’m thrilled both to be done and with the results. Allie has been super sick for the last week but I’m excited to see how she utilizes her newfound skills.

Here is the discharge writeup and goal status.



Beginning Status:
- Decreased right forearm supination
- Decreased right elbow extension 
- Decreased right upper extremity weight bearing tolerance 
- Decreased right upper extremity strength
- Right upper extremity hypertonicity 

Beginning Functionality: Allie is independent with all bed mobility, including scooting, rolling, and come to sit. She demonstrates weight-bearing through right upper extremity in quadruped positioning and prone prop with hand open, but variable thumb positioning. The patient ambulates community distances with the following gait pattern: foot flat positioning at initial contact on the right. She demonstrates wide base of support throughout ambulation. Decreased arm swing on the right (elbow flexed). Allie is able to ascend and descend a flight of 7" stairs (12) demonstrating a reciprocal stepping pattern using the left railing with distant supervision.

Goals: Achieve maximum physical abilities and a means of mobility
- The patient will demonstrate improved right grasp strength to carry a bucket with 1.5 lbs of weight for 100 ft. 
Status: Met. The therapist said that Allie could carry a half pound weight for 50 feet during the initial evaluation. That's a nice improvement. 

- The patient will demonstrate improved weight bearing in quadruped position to weight bear on right upper extremity while reaching with left upper extremity for 10 seconds. 
Status: Met. 

- The patient will demonstrate improved coordination to steer an adaptive tricycle around 4 cones with close supervision while sustaining right grasp on handle bar. 
Status: Met. She rocked this one.

- The patient will demonstrate improved balance and coordination to complete two footed jump and land with less than 3" difference between right and left foot.
Status: Met.

- The patient will demonstrate improved coordination to catch a playground ball with bilateral coordination to catch a playground ball with bilateral upper extremities 4 out of 5 trials. 
Status: Ongoing. During the test today, Allie caught the ball 3 out of 5 times. Not too shabby.

- The patient will trial the Bioness L300 to address right foot drop during ambulation. 
Status: She tried the Bioness but didn’t love it

- Patient and his family will demonstrate independence in a home therapeutic activity program. 
Status: Met.

Fine Motor

Beginning Status: Allison has good awareness and use of her affected upper extremity but has overall decreased strength and fine motor coordination/dexterity. 

Goal: Achieve hand/eye coordination commensurate with cognitive/motor recovery. 
Status: We didn’t get a status on this one.

Activities of Daily Living

Beginning Status: Patient is currently assisting with self care tasks and continues to require assistance for dressing. 

Goals: Achieve the maximal ability for activities of daily living (with/without assistive devices)

- Patient will demonstrate right forearm supination to neutral for improved ability to participate in play and self care activities. 
Status: Met.

- Patient will demonstrate controlled right wrist extension and deviation from neutral for improved performance in placing toys precisely in containers/holes/slots 3 out of 4 trials.
Status: 50% met. She keeps her wrist in neutral but can precisely place toys.

- Patient will demonstrate isolated right index finger pointing with ulnar finger inhibition with VC only.
Status: Met. This was a big one for me. It is so cool seeing her point and push buttons with just her right pointer.

- Patient will demonstrate improved finger coordination for right pincer grasp, three finger grasp and lateral grasp to manipulate small toys and foods 3 out of 4 trials. 
Status: Met. This is also very cool to see.

- Patient will demonstrate improved strength for right hand grasp as evidenced by the ability to open/close marker caps, pull apart interlocking toys and open food containers 2 out of 3 trials. 
Status: Met.

- Patient will demonstrate age appropriate bimanual skills for throwing and catching a medium-large sized ball 3 out of 4 trials. 
Status: Met.

- Patient will return demonstration of a home exercise program to maximize functional abilities.
Status: Met. This was a test for Jonathan and me to see if we would actually do the weekend homework assignments with Allie. We passed!


Skills that Allie has mastered or greatly improved:
- Supinating past midline
- Greater and more consistent active thumb abduction
- Wrist extension
- Carrying items with her thumb in abduction
Carrying items like a tray with forearm supinated
Carrying items in right hand, while using left to open drawer/cabinet
Squatting to floor to retrieve things
Opening eye level drawers/cabinets with thumb abducted/in cylindrical grasp
Carrying a large ball/bin with two hands
Carry up to 1.5lb object in right hand
Weight bearing through right hand whil playing using her left hand
Pedaling and steering a tricycle
Jumping with increased symmetry

Emerging skills:
Carrying items by both hands/arms and maintaining proper item orientation
Right forearm supination in combination with almost full elbow extension
Catching/throwing larger/heavier objects

Moving Forward

I am pleased to announce that we will not be doing constraint therapy ever again! The therapists agree that Allie has gained as much as can be gained from the program and she has officially graduated.

The therapists and I had an interesting discussion of how to know when to stop formal regular therapy. They suggested that we continue our weekly OT and PT for as long as we find them helpful, but noted that at some point it may make sense to drop them in favor of more intensive bouts as needed to work on a specific skill.  This makes a lot of sense but is something I’d never really thought about; I imagined therapy going on forever, or at least as long as we could force her to go.  They said that sports and group activities (such as gymnastics, soccer, swimming, and martial arts) could be just as therapeutically effective and give her an opportunity to be social.

One concern they noted was Allie’s frustration. She gets really pissed when she can’t do something by herself. I kind of like this because she is super motivated to figure stuff out. However, the frustration can get in the way of her figuring them out. They suggested we meet with a neuropsychologist to work on coping strategies to deal with frustration. This will be particularly important as she transitions into kindergarten and more formal learning environments. We’re following up on this.

All in all, I’m pleased with how the session went and I’m happy to move on to other things.

Monday, May 11, 2015

Hooray for Gama!

Jonathan's mom Bonnie (aka Gama) came into town last week to help us with Allie's constraint therapy. The timing could not have been better because I was swamped at work and Jonathan is running low on vacation time.

She came into town on Sunday and Allie was thrilled to see her. She was particularly excited to show off her crab walk and bike riding.

It was a busy week. 

To add to the craziness, Andrew suddenly spiked a 103.5 fever at school on Wednesday when both Jonathan and I were in meetings without our cell phones. Bonnie swooped in, picked him up from school, and took care of them both until Jonathan could get home. Tom also flew into town to help out that day and they both very happy to have Papa around.

Andrew seemed all better on Thursday and got to go up to KKI for the day with everyone. Then, he spiked a 103.8 fever on Friday. We took him to urgent care that night where they checked him for assorted infections, eventually sending us home with antibiotics for an ear infection. The poor guy was having a rough time.

Allie also had a rough Friday. It was cast off day but she desperately wanted to keep her cast on. She was really freaked out by lefty and didn't want to look at it or move it. She sat on the couch mostly hiding her arm the entire day. Here she is during one of her happier moments. 

Gama and Papa left on Saturday, much to Allie's dismay. But both kids were feeling a little better about life and we had an eventful afternoon. We went for a long walk and drove to a local nursery to pick out flowers. Allie liked riding around in the cart with the flowers.

Sunday was Mother's Day and it was glorious. I got to sleep in and came downstairs to Jonathan playing trains with both kids. Jonathan was building tracks around the playroom; Allie was pushing her trains around the finished tracks; Andrew was tearing across the tracks pulling them and the trains apart wherever he could. It was really cute. We then went out to a new breakfast restaurant and took a long walk, he planted all our new flowers, and we otherwise had a very restful day.