Wednesday, April 30, 2014

Day 9 and 10 with the cast

Day 9

Allie was a index finger and pinching champion yesterday.

While she was eating her breakfast, I noticed that she was pinching her bagel pieces between her thumb and pointer finger and bringing the pieces to her mouth.  This is very different from the whole hand grasp that she was doing before.

During therapy, she did one of her hallway checkups with me and brought a shopping cart full of marble toys.  Check out her pinching!

Day 10

Today was Allie's day in the therapy pool.  My phone fell out of my bag in the car so I didn't get any pictures, but she was adorable.  The cast is waterproof so she was casted in the pool.  Another 3 year old girl who I've seen in the hallways was sharing the pool with Allie and they were so cute together.  Allie would run up to the girl, say "you can't catch me!", and then the other girl and her therapist would chase after Allie.   They had a great time.

After the pool, Allie took a shower and got dressed.  One of her therapists noticed a little rash on Allie's left arm.  They took off the cast to check it out and decided to give Allie a day out of the cast to let it heal before the cast goes back on tomorrow.

Tuesday, April 29, 2014

Days 4-8 with the cast

Allie has been doing well with her constraint therapy.  She really seems to enjoy the novelty of the cast and all of the attention she gets while she's wearing it, but all the therapy is exhausting.  Last Thursday (day 3 of the cast), she was supposed to go to school after therapy but she fell asleep in the car and I couldn't wake her up.  We changed plans and went home instead of school, and she continued to sleep in her car seat for 2 more hours.  We just sat in the car in the driveway of our house; I had a conference call for work, caught up on emails, and relaxed until she felt like waking up.

Car seat snooze 
Friday was another good therapy day and she got sent home with a few homework assignments to do both Saturday and Sunday:

1) Carry around a bucket with a little bit of weight in it.

We had some friends come over on Saturday and their 4 year old daughter was perfect motivation for this one.  The two girls walked around the yard with buckets and picked up rocks together.  Allie would carry the bucket with Righty, set it down, pick up rocks, put them in the bucket, and pick up the bucket again.  It was perfect.

On Sunday, we had her load the same bucket with toy trains and bring them between rooms.

Her grip is getting much stronger.

2) Pick up and set down items in a controlled fashion.  Make sure items that are supposed to be upright stay upright.

This was a little hard and frustrating for Allie.

On Saturday evening, we all had a picnic in her playroom.  She brought us food and had to set it down gently on the table.  She has a bunch of little cupcakes that worked perfectly for this, so we mostly had a cupcake picnic.

On Sunday, she had to set the trains that she was bringing from room to room in the bucket down gently on the ground or on a table.

There were more than a few moments of frustration with this exercise, but we saw a lot of improvement in her ability to control how she opened and closed her hand.

3) Point to pictures in books with just an index finger and turn pages in a book by pinching the page between her thumb and pointer finger.

This is hard for her, but she has made huge huge gains.  She can now get her index finger out by itself to point and pinch.  We've been working on this for a year and haven't made much progress.  But, she's getting it now.  Yay!

4) Carry a plate with toy food on it by turning her palm to the sky and extending her fingers.

Supination (the act of turning her palm toward the sky) is difficult.  It's getting easier for her to rotate her hand on her own but the idea of her functionally carrying something that way is a bit far for her right now.  Still, we carried the items (mostly with our hands over her hand) and used this as a chance to stretch.

Thursday, April 24, 2014

Day 2 and 3 with the cast

Day 2

Allie's second day of casted therapy went really well.  She had so much fun playing with the therapists and running into the hallway to show me the fun things she was doing.  

It is glorious not being in the room with Allie during her 3 hours of OT and PT.  I think it's fun for her too because she can take a break to run out and tell me about all the cool stuff she's been playing with. 

One of her hallway breaks was to show me how strong Righty's grip is getting.  The PT was holding onto a hula hoop and pulling Allie down the hallway.  

Later, Allie came out riding the bike.  She was very proud that she was peddling (which I had never seen before!) and steering with just Righty.

After therapy, she went to school to hang out with her friends for a few hours and then I picked her up early to go to a doctor's appointment with me.  She got to meet my high-risk OB and see pictures of her baby brother.  The OB had never met Allie before but obviously knew about her medical history.  He was so shocked by Allie and he kept saying "I really never would have known..." 

After the ultrasound was done (shown below), recent labs were reviewed, and stats given (the baby's in the 85th percentile for size, weighing in at 3 lbs 2 oz), we were surprised when the OB said he didn't think we needed to see him any more.  He said he was pleased with how everything is going and he thinks my regular OB visits will be enough.  However, he still recommends that I get fetal monitoring from weeks 36-39---where I get hooked up to a fetal monitor during my regular weekly visits just to check the baby's heart rate, etc.---and that I schedule a C-section for 39 weeks.  That sounds fine with me.

Day 3

When Allie woke up this morning, we noticed that her cast had started to come apart.  Apparently she was pretty squirmy during the initial cast making and the part near her elbow detached and was pinching her.

She had a big breakfast of bagels and cream cheese, which she ate all by herself with Righty, and then we headed back to Baltimore.  They remade a new cast with the elbow cut out and all seems well.  Here are some pictures of Allie on the scooter and the bike again.

Allie is going to school once therapy is done today and all her friends are going to decorate her cast with stickers.  The kids were very curious yesterday and we thought this would be a fun way for everyone to talk about it and ask questions.

Tuesday, April 22, 2014

Allie and the Cast

Today was Allie's first day with the cast and it got off to a rocky start.  The PT greeted us as soon as we showed up and took Allie to put her cast on.  The only problem was that it was pinching her elbow and I could hear the screams down the hall.  About 15 minutes later, Allie emerged from the room sans class and looking a little like she won.

An OT came out to say that they're going to modify the cast and try again in a little while.  Allie spent the first hour doing all sorts of fun things, like playing with a remote control airplane, brushing a My Little Pony's hair, and running up and down the hallway pushing a mini baby stroller.  

By then, the cast was fixed and Allie got to play with the therapy dog.  The dog's name is Lewis (inexplicably pronounced "Louie") and they gave me his business card.  Allie liked him and she got to take him for a walk outside.

One of the OTs that has been following Allie since the beginning was really impressed at how well Allie is doing.

After a busy 3 hours (for Allie, but not for me---I got to just sit in the hallway with wifi and do a work conference call!) she ate a banana in the car with Righty on the way home.  She laid down for a little while and then was up for some more Righty action.

We did a lot of painting and coloring.  First she painted with a brush, and then colored with markers, and then dot paint.  She had a good time.

Then, we went outside and colored on the sidewalk with chalk.

After all the coloring, we went out to dinner with some friends and she ate a hamburger, tater tots, and ice cream all with Righty.

By the end of the night, Righty was looking really tired.  She went to bed without a fight and we're excited to start day 2 tomorrow.

Monday, April 21, 2014

First Day of Constraint Therapy

"I LOVE Home Depot!"

Jonathan took Allie to her first day of constraint therapy today, which included an OT and PT evaluation and making the cast.  Both of the therapists were impressed with how functional Allie is. She doesn't get the cast officially on until tomorrow but I'm excited to see how it goes.

This program seems a lot cooler than our previous iterations.  Every other Tuesday a therapy dog comes to interact with the kids, they get to go in the pool one day a week, play on the playground as weather permits, and they alternate intense activities like strength training with light activities like story time with page turning and crafting.

The bummer news is that Allie didn't get the blue, pink, and yellow cast with yellow rocket ships that she wanted.  However, the therapists kept the cast overnight and are going to draw rocket ships on it for her.  I hope she likes it!

Sunday, April 20, 2014

Happy Easter!

Back off with the camera mom!
Just kidding! 

Allie had two Easter parties today and had a blast at both of them.  The first was at one of her friend from school's house.  They started off the day hanging out and blowing bubbles (shown above).  

Then all the kids got to decorate bags to use in the hunt.  

After their bags were ready, they gathered outside to start the hunt.

Let's make sure this bag works!

She was really good at the hunt.  Her bag was full in no time and she loved it!

I am the egg finding master!
Allie proudly came to show us her bag and was shocked when Jonathan opened one of the eggs to find candy.

Then, she and her friends played and colored on the driveway.  

It was a very fun party.  

Lucky Allie then got to go to her BFF Abby's Easter party.  This is year 3 of attending Abby's Easter egg hunt and she had this egg finding business down.  (Check out year 1 and year 2 to see how much she's grown!)  She ran out and gathered all the eggs she could as quickly as possible.  Look at that Righty action.

After the egg finding, Allie binge ate a lot of the candy, went totally nuts singing at the top of her lungs, and almost fell asleep on the car ride home.

What a fun Easter!

Allie gets her cast on tomorrow for her latest round of constraint therapy. We're excited but nervous about having her casted for 3 straight weeks.  I think as long as Allie gets a cool looking cast, she'll be fine.  She is currently hoping for a blue, pink, and yellow cast.  We may have a lot of cast painting in our future.

Thursday, April 17, 2014

Neurology Appointment

Dress up time at school
Allie had a neurology check-up today and I hadn't realized that it had been a year since we had last seen the neurologist.  The doctor was very impressed with Allie, particularly her walking and talking.  She said that if she saw Allie on the street, she'd never suspect she has cerebral palsy.  I like hearing that, especially from someone who spends all day with motor-impaired kids.

We talked about Allie's therapy schedule and she was glad that she still gets so much.  She was impressed that we were able to work out therapists going to Allie's preschool because apparently it is difficult to arrange most of the time.  I guess we're just lucky that it wasn't an issue for us; both the therapists and the teachers were happy to have therapy in the classroom.

We also talked about potentially lowering or weaning Allie off her epilepsy medication (Trileptal).  The rule of thumb is that after a kid is seizure-free for 2 years, there is a good chance that the brain has stabilized enough to stay seizure-free on its own without medication.  The neurologist warned that even though it has been 2 years and 2 months since Allie had a seizure (knock on wood), she's a little hesitant to take away the meds.  The stroke interrupted some brain connections that are likely to continue firing indefinitely.  These misfirings are mitigated by the epilepsy medication and, if left untreated, they can create some broader neuron misfiring, which can lead to more seizures.

She suggested we hold constant at Allie's current Trileptal dose, which she's been at for over a year now.  This is like a de facto wean because she's growing and the medication dose is staying the same, making her dose/weight ratio lower.

Other than that, it was just a nice check up visit and she was happy to tell us to come back in a year.  At the end of the session, Allie turned to the neurologist and said "I like my doctor" and gave her a high five.

Wednesday, April 16, 2014

Bye Bye Granpa!

My dad has been visiting for the past two weeks helping us fix up our basement.  We all have enjoyed having him around and our house is much nicer for it.  Thanks, Granpa!

Monday, April 14, 2014

Rockstar Righty

One of Allie's friends had a birthday party this weekend and I was totally impressed at her unprompted Righty action during the party.  I looked over at one point and she was playing with the rings on the play equipment and just enjoying herself.

There was a ladder leading up to the slide and Allie climbed up it without any help multiple times.  Check out how she's actually using Righty to help climb.  (Her diaper was not actually as full as it looks in this picture... I promise!)

Then, after some delicious pizza, she took in the view while holding on to two tent legs.

Her language has taken off too.  When we were driving to and from the party, she was putting together perfectly formed sentences with correct grammar, good pronunciation and proper pronoun usage and verb conjugation.  I got home and told Jonathan that I think Allie figured out how to speak that day.

She's my rockstar.

"My Lefty is Special Too"

Jonathan and I decided a while back to be very open with Allie about her stroke and her physical limitations.  However, finding a way to talk about it has been difficult for me.  I don't think she realizes yet that not all kids have physical, occupational, and speech therapists.  This is kind of good because we don't want her to feel like she is inherently different.  But, she's starting to notice differences and we don't want her to be confused.

For example, we were in the car the other day and Allie saw a woman carrying a probably 6-month old baby across the street.  The baby had one of her hands fisted, as babies often do, but Allie noticed it and said "That baby has a Righty like me!"  I asked what she meant and she said "That baby's Righty is like mine!" and she held out her Righty.  I agreed that the baby's Righty and Allie's Righty looked similar, and we just left it there.

The next day her school was having an Ice Cream Sundae theme day where all the kids got to make ice cream sundaes during their afternoon snack time.  I showed up a little early to pick her up and I ended up sitting at the table with Allie and her friend's while they made their sundaes.  One of Allie's friends was scooping sprinkles on with one hand and scooping chocolate fudge on with her other hand.  Allie noticed this and declared "Good job using Righty!"  The girl had no idea what Allie was talking about but Allie looked over at me and nodded approval of her friend's right hand usage.  I just said "Yeah, she's really good at using her Righty."

Last night, Allie and I were eating dinner and she noticed my bright red birthmark on my knee.  She asked if I hurt myself.  I said "No. I was just born with it.  It doesn't hurt, but everyone is born differently."  This seemed like one of those perfectly set up conversation points so I continued "It's kind of like your Righty.  Not everyone has a Righty like you."

She enthusiastically nodded and lifted Righty to admire it.

I continued "You were born with a special Righty."  She thought about it for a moment and said "Yeah. My Lefty is special too!"

I agreed and we started talking about something else.  At least a seed has been planted.

Tuesday, April 8, 2014

"I Climbed Myself"

Allie had a busy day of back to back physical therapy, occupational therapy, and speech therapy.  She was remarkable cooperative at all of the sessions.

As a reward, we went to exchange a pair of Allie's sneakers that I had ordered online.  She was so excited when they came but disappointment gave way as soon as she opened the box: "I wanted PINK!" She strutted into the shoe department, quickly made friends with the salesman Mr. Wayne, got her feet measured, and picked out two cool pairs of sneakers.  She also got to pick out some new Hello Kitty socks, which totally made her day, and Mr. Wayne gave her a pink balloon as she left.  This girl loves shoe shopping.

We walked to the play area in the mall (all the while Allie shouted "I got new shoes!!!" at everyone who walked by) and she got a chance to climb on some unidentifiable objects with a bunch of other kids.  She was really nervous about it.  After a couple attempts at getting up on her own, she asked me to help.  I stood behind her with my hands gently touching her back and she climbed up all on her own.  She kept checking "You got me Mama?"  I would assure her that I did (even though I really wasn't helping) and she kept climbing.  Once she was on top, I would back off and let her maneuver the rest of the climbing herself.

She climbed up on the weird plant/flower thing (pictured above) three times before she was ready to go home.  As she was putting her shoes back on, I leaned down and said "Hey Allie, can I tell something?"  She looked up.  "You know, when I said I was helping you climb, I was behind you but you actually climbed up all on your own."  She gave me a big smile "I did it myself?!?!"  I told her she did, and she gave me a big hug.

On the walk to the car, I heard her say softly: "I climbed myself."

Saturday, April 5, 2014

Family Visiting

"Grandma pushes fast!"

Allie's Grandma Bets, Uncle Mikko, and Auntie Hannah just left to head back to California and we were sad to see them go.  Just like the last time Mikko was here, Allie wasn't feeling well and Mikko did a great job of keeping her company.  They watched a lot of Curious George together, ate crackers in Allie's make-shift couch bed, and read a lot of books.  

Sick is better with company

This morning before we left for the airport, we went to play at the park.  Allie really loves the swing and, in all my pregnant awkwardness (below),  I appreciated Grandma Bets taking over pushing Allie (pictured at top).

It was nice having everyone in town.

Mommy, Allie, and Auntie Hannah

Thursday, April 3, 2014

Occupational Therapy Conference

I participated in a panel discussion on parental impacts of constraint therapy yesterday at the American Occupational Therapy Association (AOTA) annual conference and it was really interesting.  There were three other families represented, two of which had kids who were officially diagnosed with in utero strokes and their kids were able to attend the conference to talk about their experiences. 

One of the kids was 5 years old and he was just finishing up his first clinical constraint therapy program.  He looked really symmetric overall.  He talked about a less formal constraint therapy he did before and how he hated it because his cast was itchy.  He went on to say his current cast that he got through KKI is soft, he really likes playing with his affected hand, and the toys are fun.  He was really excited to show the crowd how he could point with his affected pointer finger.

The other kid was 10 years old and she did two intensive constraint therapy programs in Alabama, where the pediatric constraint programs first were developed, and she really liked both.  She had just turned 2 year old for the first month-long, 6 hour per day constraint program.  When she was 5 years old, she did an intensive bimanual experience that she remembers disliking because the other kids in the program were younger and cried a lot.  And when she was 7, she did another intensive constraint program in Alabama and had a really great time.  They’re thinking about doing another program soon.  I couldn’t see any obvious impairment with this girl; she was reading a book and holding it with both hands and looked totally typical.  It was awesome. 

It was interesting to hear all the similar experiences that we’ve shared with these other families.  Both in utero stroke families had almost the exact same diagnosis timeline that we had (typical seeming kids until about 4 months, a couple months of watching and exploring, and MRI that confirmed the stroke about 8 months).  They all talked about challenges with early intervention OTs, specifically the pushback about constraint program. 

It was a great opportunity for me to tell Allie's story and it was nice to see these older stroke kids doing so well.

My dad (Granpa) and my brother (Uncle Mikko) are in town and Allie is so excited to have them.  They’re helping to renovate our basement so it will be a functioning guest bedroom and art studio for Allie.  The first thing out of her mouth this morning was “Is Uncle Mikko sleeping?" I said he was and she yelled "Wake up Uncle Mikko!"  My sister (Auntie Hannah) and my stepmom (Grandma Bets) are in town too but Allie hasn’t had a chance to visit with them yet.  She (and we) will get to catch up with the full gang tomorrow and Friday.