Thursday, April 30, 2015

Constraint Therapy Goals

Thank you notes for Allie's teachers (top) and Andrew's teachers (bottom)

Here are Allie's official writeup and goals for this round of constraint therapy:


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

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. 
- 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. 
- The patient will demonstrate improved coordination to steer an adaptive tricycle around 4 cones with close supervision while sustaining right grasp on handle bar. 
- 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.
- 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. 
- The patient will trial the Bioness L300 to address right foot drop during ambulation. 
- Patient and his family will demonstrate independence in a home therapeutic activity program. 

Fine Motor

Current: 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. 

Activities of Daily Living

Current: 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. 
- 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.
- Patient will demonstrate isolated right index finger pointing with ulnar finger inhibition with VC only.
- 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. 
- 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. 
- Patient will demonstrate age appropriate bimanual skills for throwing and catching a medium-large sized ball 3 out of 4 trials. 
- Patient will return demonstration of a home exercise program to maximize functional abilities.  

Constraint therapy, round 4, days 10-15

Day 10

Allie and Andrew went to play at Allie's BFF Abby's house in the afternoon. The night before, Abby asked if Allie wanted to make cookies. She was kind of excited about it.

They made cookies, played at the park, and had an overall great time.

Allie has been doing a great job with her independent finger movements. I'm happy to announce that she can pinch now!

Day 11

Allie got a surprise invite to a local puppet show with a friend of ours and her two kids. Allie went by herself and was proud of her independence. She did get a little scared of the puppets but had a good time with her friends.



Allie also had a lot of KKI homework this weekend.

She had to draw on a chalkboard...

Writing "Allie" with Righty

She's also pointing with just her index finger. Part of her homework was to push a button with just her pointer 5 times. She got really into it and typed the following:

"I            LO VE     DADDY ALLISON            MOMMY   ANDREW        FELIX      WOLF"

The last two names are two of her friends from school.

Day 12

Monday was a normal KKI day. Her favorite activity is the bike. She's getting pretty good at steering!

On the way home, however, it was starting to look like it wasn't going to be a normal evening in Baltimore. There were police lining the streets and lots of barricades set up. I didn't see any protesters but it looked like the city was bracing for it.

We let Allie watch some of the news with us that night. The riot was confusing and she wondered why people were so upset. We talked a little about it. She said "But people are nice. Why are they acting like that?" I liked that she could look at someone setting fire to a building and still think he's nice, just misguided. I'm not sure I'm so generous.

Day 13

Jonathan, Allie, and Andrew stayed home on Tuesday and had a fun day filled with outdoor activities.  Andrew wasn't feeling well, though, so he mostly just sat in his stroller and enjoyed the fresh air.

Day 14

We decided to go to KKI yesterday. It was weird to see the National Guard line the inner harbor with their huge guns and military jeeps. There wasn't much destruction nearby; just some tipped over chain link fences.

Andrew stayed home from school so he accompanied us to KKI and liked watching his sister bike by.

Last night, we tried to take the kinesio tape off Allie's right arm (you can see it in the picture above where she's coloring). She flipped out. She was screaming and crying. Flailing and trying to hit us with her cast. She did not want it off. We eventually held her still and cut off the part of the tape around her thumb, which was soggy and crusted with food.

As soon as Jonathan cut the tape off, she was fine. She said "You didn't cut off my thumb!" Apparently when we said "we need to cut it off", she thought we were referring to her thumb. I explained that we'd never cut off her thumb. She said "Yeah, I have bones in there!"

Day 15

While guards and police still line the Baltimore streets, things seem calmer. I'm sitting in the hallway at KKI now and she just ran out to show me her freshly painted nails. She picked the nail polish as a prize for winning a game of chutes and ladders. She really loves it here.

Friday, April 24, 2015

Day Out with Thomas

Allie had a busy day. We had constraint therapy in the morning where Allie did a bike obstacle course, made a bright blue cake, and got to take the cast off momentarily to wash her stinky left arm. But the real highlight of the day was going to B&O Railroad Museum and riding on Thomas the train!

The anticipation was almost too much and it brought on all sorts of crazy faces.



Allie really enjoyed the ride...

The view was interesting.

As was the police escort stopping us from getting held up.

It was a fun day.

Thursday, April 23, 2015

Constraint therapy, round 4, days 6-8

Marble time

We got some good news from the OT who has been working with Allie for all four constraint rounds: this will likely be Allie's last time doing the constraint program!

The OT was thrilled that Allie was able not only to keep the skills that she developed last time but was able to considerably build on them. She said that there are some fine tuning things for us to work on, but Allie is functional in almost all areas.

She suggested that we consider intensive bi-manual camps where kids work on two-handed skills but she doesn't think the constraint program is necessary for her again.

We could not be happier.

Wednesday, April 22, 2015

Andrew's 9 month check up

"I'm far too mature to find this amusing"

Andrew had his 9 month checkup a couple weeks ago. Here are his stats:

Height: 27.75" (25th percentile)
Weight: 18lbs 1 oz (22nd percentile)
Head diameter: 95th percentile

He's still our little, big headed boy.

He's always on the move and in mostly good spirits during the day. However, he's decided that he doesn't need sleep anymore. To minimize everyone else's sleep disturbance, we moved him downstairs into his portable crib at night while Jonathan and I trade off who "gets" to sleep down there with him.

Andrew is a good eater, enjoying most foods that he's tried.

One problem that I imagine many second kids experience: I don't feel like he gets the attention he deserves. When Allie was a baby, she and I would go for long walks and play constantly. It seems like we're always carting Andrew to Allie's events and trying to keep her entertained.  Luckily, once KKI is over, I'll get my Thursdays back where it's just the two of us hanging out. I need more Andrew time!

Monday, April 20, 2015

Constraint therapy, round 4, day 5

Prepping for day 5 with some fresh nail polish
Allie was excited for today for two reasons:

Daddy and Andrew were coming home from MN...

And she got to play at KKI.

After KKI but before the airport, Allie had to go to school. She was not happy about it. This was going to be her first time at school this round with the cast and I think she was nervous about it. We walked in and all her friends swarmed around her to see the cast. They were very curious and a little envious. She explained to them that she had the cast to make Righty super strong. I don't think they really understood it, but one of the girls said "Maybe my doctor can give me a cast too?" 

We brought Allie's sticker collection for the kids to decorate her cast. I announced that Allie had a surprise to share later and all the kids were excited. 

Everyone was getting ready for nap time so I tucked Allie in. As I kissed her she whispered "they like my cast" and she seemed relieved.  

I came back a few hours later just in time for cast decorating. It was so sweet.

She showed all the stickers off all the way to the car. As soon as she was in her carseat, she turned serious and said "There are too many. Take them off please."

So, I took them off and she was relieved.

We drove to the airport and had burgers and milkshakes while we waited for Allie and Andrew's plane.

She loved watching the airplanes take off and land, and saw her first ever rainbow.

Tomorrow, Jonathan and Andrew are heading to KKI and I'm looking forward to hearing how it goes.

Sunday, April 19, 2015

Constraint therapy, round 4, days 1-4

Allie started her 4th round of constraint therapy at the Kennedy Krieger Institute on Thursday. It's hard to believe this is our 4th time! (See rounds one, two, and three.)

They started the first day by making the cast. Allie was a great sport. When she started getting a little fidgety, she passed the time taking surly selfies. That's my teenager in training.

After the cast was done, the PT took it to decorate it and Allie did her evaluation. I don't know how she scored yet but it was so cool seeing her be able to do all the stuff they asked of her. I was particularly proud when they were testing her protective reflexes by pushing her off balance. It's kind of cruel looking because it seems like the PT is just pushing your kid, but Allie not only protected herself with both hands but she firmly told the therapist "Please stop pushing me!" The PT let Allie push her down for revenge and they were back to being friends.

Allie got sent home without the cast and she enjoyed a nice spring day. She got to her preschool just in time to have her favorite school lunch with her friends and place her ice cream order for Sundae day. 

Nothing says Spring like a foot out the window.
On Friday, we started the day by dropping Jonathan and Andrew off at the airport so they could visit Minnesota for Cousin Noah's bar mitzvah. Congratulations Noah!

When we got up to KKI, Allie got to put on her cast. They had decorated it with a drawing of Curious George and the text "Allison & Curious George". She was thrilled.

The therapy was tiring but she handled it well. We skipped school and went home to hang out with our friend Dr. Daniel, who had spent the night. She went on a long bike ride and the three of us went out to lunch. It was nice seeing Daniel.

Later that night we had to start dealing with normal life things. Bathing is a little challenging with the cast...

And snacking is somewhat difficult...

But sleeping was the hardest. She had a tough time getting comfortable and adjusting her blankets. I made quite a few trips into her room to try to get her cozy. 

And then I got sick. There has been a stomach bug going around and it was my turn. Before I knew it, Allie was taking care of me. She was bringing me blankets and tucking me in. She brought me toys and called me "Little Missy".  She gave me a kiss and said "You're my best friend." I love that girl so much. 

Thankfully friends swooped in to help. Allie was picked up and wonderfully cared for all day. Other friends ran errands and brought me food. It was amazing.

I was feeling much better by the evening and Allie came home, had dinner, and went to bed. Another terrible night's sleep ensued. 

We woke up this morning and Allie wanted to get a chocolate croissant from a store down the street. She was running as fast as she could, but occasionally needed to stop for impromptu naps. I was right there with her.

But eventually we made it and enjoyed our croissants.

So far, her frustration is high. She seems to be avoiding some things because they're difficult. She's had a couple of the biggest meltdowns I've seen.

Still, she's had several moments of being extremely proud that she could do something with Righty. One of those proud moments was discovering that she can eat oatmeal all by herself.

Fingers crossed that the frustration goes down as she realizes how much she can do.

Sunday, April 12, 2015

Cherry blossoms

It finally feels like Spring here and, in DC, Spring means cherry blossoms. This morning we went down to the tidal basin where the cherry blossoms are densely located. It is beautiful.

Allie particularly liked sitting in the trees.

Aside from blossom spotting, we spent almost all weekend outdoors. We went to several parks, played in the yard, scoped out the location for Allie and Andrew's future playhouse in the backyard, ate at outdoor cafes, and hung out with friends.

Andrew also rode his first ever swing and loved it.

He woke up this morning chanting "da da da da da da da da da" for the first time. He's said "ma ma" a couple times but it seemed almost like an accident. I'm afraid I have to call it for "Dada" first. Shucks.

Monday, April 6, 2015

Easter 2015 (aka, the day the monster visited)

Allie had a fun time preparing for Easter this year. She dyed eggs with a friend...

We painted our nails...

And we gathered a bunch of sticks to do something with...

But Jonathan and I did a terrible job of preparing her for the Easter bunny.

Allie woke up on Easter morning and found a trail of coins and candy leading her downstairs to the kids' Easter baskets, a giant inflated egg, a mess of half eaten carrots, and her hidden Easter eggs. She was so puzzled by the whole thing. She sat down to inspect the carrots, looked at me seriously, and asked: "Why would this MONSTER do this?!?!"

We tried to explain that the Easter bunny isn't a monster. He just comes and sometimes plays tricks by hiding their eggs. "Why would he do that???" I guess I don't know.

Later in the day we went to her BFF Abby's house for their annual egg hunt (see our 2012, 2013, and 2014 egg hunts). Allie found a lot. After the hunt, she walked over to a slightly older group of boys, exchanged some words, and they started giving her a bunch of their eggs too. I have no idea what she said but she made out very well.

Andrew continues his strange exploration of new foods. Pears are still his favorite but he hates to love Ritz crackers.