Tuesday, December 17, 2013

Stairs & Jumping Queen

"I haven't eaten anything.  Nope.  Definitely not."

Allie impressed the heck out of me yesterday.  We were walking to her school and there are 6 steps that she likes to walk down.  It was really cold out and holding the metal hand railing wasn't appealing so she just walked down the stairs all by herself.  I have never seen her do stairs without a hand railing and we had just set that as a new goal for her physical therapy.

Then, when I picked her up from school she wanted to show me her jumping.  She jumped and it was perfect.  Both feet off the ground.  Even feet.  Everything that we had hoped for.

She had PT today and her therapist said that she would have to change Allie's most recent evaluation to note that she is now a jumper.  That's my girl.

We're trying to figure out a way to transition much of her PT and OT to school.  Logistics are more complicated than they need to be but once it's done it will be helpful for her teachers to get more instruction and wonderful for us not to have to do it.

Tuesday, December 10, 2013

Snow Day

Today is the first snow day of the year.  Allie's school was cancelled and my work was closed.  The only problem with this is that I'm back in Japan for the week so I don't get to enjoy it!  Poor Jonathan, however, did not get a snow day but took the day off to stay home with Allie and play in the snow.

Jonathan, being the wonderful dad that he is, has also turned our house into a Christmas cookie factory with Allie as his chief elf.  She really liked the frosting.

And she is very proud of her accomplishments.

We've been able to Skype a lot, which is helping with my homesickness.  I can't wait to see them both on Friday.

Monday, November 25, 2013

Parent Teacher Conference

Allie's teachers and I had her semi-annual parent teacher conference today.  The following is the summary of her developmental progress that her teachers wrote.


SOCIAL/EMOTIONAL (Sense of Self; Responsibility for Self and Others; Prosocial Behavior)
Allie plays well by herself and has recently begun to briefly observe her peers playing before she plays alongside them or joins them in play.  Once she engages in play with her peers she will offer to share what she is playing with to another child.  Allie shows great confidence in meeting her own personal needs despite the weakness of her right side by: climbing playground equipment, grasping and using crayons, scissors, and tweezers.  She is able to follow two or more step directions from her teacher.  For example, after being directed she will wipe her nose, throwing away the tissue, and then wash her hands.  SHe expresses persistence in completing tasks by getting her coat from her cubby, putting a puzzle together, and sipping paper with scissors.

PHYSICAL (Gross Motor; Fine Motor)
Allie is acquiring gross motor skill by swinging a bat and a golf club at a stationary ball and by using a toy hammer to bang plastic nails into a foam surface.  She is able to use her feet to move a tricycle forward or backward but is still developing in using the pedals.  She uses refined wrist and finger movements in her left hand by pouring milk from a cup into a bowl of cereal, squeezing tweezers, and pounding and poking play dough.

COGNITIVE (Learning and Problem Solving; Logical Thinking; Representation and Symbolic Thinking)
Allie is developing in transitioning from one activity and maintaining focus.  She has the ability to continue and complete an activity of her choice without distraction but quickly loses interest during whole group activities.  Allie has begun to show interest in playing matching games and can easily match shapes, colors, and objects.  She is also showing a beginning interest in letters and numbers, being able to count 1 to 4 objects, and recognize that the letter "A" is for her name as well as for the word "apple".

LANGUAGE (Listening and Speaking; Reading and Writing)
Allie has the ability to follow simple two or more requests.  When the teacher announces "It is outside time.  Please go to your cubby and get your coat." She goes to her cubby to get her coat.  She is developing skill in entering into conversation using more than one or two word sentences.

To continue to enhance development in the following areas:

  • Social-emotional: helping her to become comfortable in engaging in play with peers by coaching her on words to use i.e., "Can I play?" or perhaps having classmate play dates;
  • Physical: Continue to encourage and challenge her to use her right hand.  As well as for parents and teachers to continue sharing learning strategies on ways to enhance and strengthen her physical development especially on the right side of her body.
  • Language: by engaging in conversations with open ended questions.


Saturday, November 23, 2013

Why we won't be doing Botox again

Playing at a friend's birthday party

Allie is now a month and a half post-Botox and we have seen some good and some bad.  The effects are just starting to wear off a little and this seems like a good time to reflect on what we have seen so far.

The good: Allie's walking is much more symmetric and she doesn't seem to limp as much.  Some of this may return as the Botox continues to wear off but we think she's built a lot of strength and there is a good chance that some of these results will stick.

The bad:  While we were initially encouraged by her right hand loosening, this turned out not to be a good thing.  Allie lost the ability to do a lot of things that she was able to do with Righty and it really crushed her confidence.  The looseness ended up being non-functional for her and, even though she has gained some strength in trying to push through it, it was a net negative experience.

Allie's teacher pulled me aside as I was picking her up yesterday and said that Allie is having a hard time lately.  Instead of playing with her friends like she did pre-Botox, she stands back and watches them play, seemingly unsure if she can play too.  Her teacher also said that since the Botox, Allie has been asking for help with everything and getting really frustrated when they try to get her to use Righty.  Apparently Allie has been asking for help to do simple things like clearing her plate from the table after lunch or throwing things away.  This is all stuff that she was fine with before.

It's a total bummer.  I hate the thought of her not playing with her friends because we hurt her confidence in her ability to do normal things.  Hopefully she'll regain her confidence as her functionality continues to return.

Knowing what we know now, we wouldn't have done the Botox.

Opthalmology Update

Allie had her followup opthalmology appointment last week.  Her last appointment was in September 2012 so we were way overdue for her "6 month checkup".  Oops.  In spite of the delay, it went really well and Allie was very well behaved for it.

After an initial vision exam, the nurse and doctor each loaded Allie up with a stack of stickers.  Her sweater was completely covered and was pretty pleased with it.  The nurse put in the eye dilation drops but Allie was a little pouty in the room afterwards.  I asked what was wrong and she said "No stickers on pants..."  When the nurse came in to check on Allie's eyes, Allie asked "One more sticker, please?  No, two??? Pants!"  We had completely wiped out the room's sticker supply so the nurse had to go hunt around for some more.  Allie really appreciated it.

After an in-depth eye exam, the doctor said that there is no noticeable sign of vision loss or eye damage.  She said it is still possible that Allie has a right visual field cut from the stroke but that she has figured out how to work around it.  With a field cut, the lack of vision never improves but the person gets better at remembering to look in the area where the vision is lacking.  Kind of like how you just remember to look in your blind spot while driving in your car.  Her optic nerve is still fair too but that is not completely indicative of damage.  It could just be because she is a fair skinned kid.

Moral of the story: we'll just have to wait and see what (if any) vision issues she has down the road.  The ophthalmologist told us to follow up in a year, which makes me feel like we didn't drop the ball too badly by putting this followup visit off so long.

Allie and I have started the tradition of getting ice cream together after doctor's appointments.  It kind of makes the whole event feel more fun.  This time, Allie was insistent that she wanted "hot" ice cream.  I'm still not sure what that means but luckily she was fine with her regular cold ice cream.

Sunday, November 10, 2013

Fun at the park

There is a park near our house that Allie loves and we bring her there for some good therapeutic play whenever we can.  There are several sets of equipment for all different levels of kids.  The first time we went there, I was so impressed because it is largely handicapped accessible with subtle ramps so kids with disabilities can play right along with typical kids.  I remember thinking to myself, 'how did I never think about accessible playgrounds?'  Allie has changed my perspectives in many ways.  

At the park, there is is a big hill down to a stream.  It is really steep. Before Botox, she had a hard time walking up it because her right ankle couldn't flex enough and the more she tried the stiffer her leg got.  It was very frustrating for her.  We walk up the hill now every time we go to the park and, while she still doesn't love it, she seems to be getting more confident.  Plus, the stream at the bottom of the hill is enough of a pull to get her down and then the playground on top is enough to get her back up.  I love it.

I woke up this morning to these great photos from Jonathan.  

Allie also found a big pile of leaves.  Look at her playing with both hands! 

Saturday, November 9, 2013

"B is for Beer"

Allie has been working hard on her ABCs.  She wants to read her alphabet book first thing in the morning and last thing at night.  She sings the ABC song to any song that is on the radio.  I think she thinks that is the only song people sing.  She sings it while she washes her hands, while she walks down the street, and while she rides in the car.  She still drops some letters occasionally but she's getting pretty good.

Her alphabet book is fun because she gets to slide a little window to show an animal that starts with each letter.  A is for alligator, B is for bear, C is for camel, etc. She is also getting good at identifying the different animals and learning to say all their names.  She has a little trouble with the B animal, however.

We were at her OT appointment last week and since Allie is so in love with doing the alphabet, the OT got out a wooden letter puzzle for Allie to try to do with Righty.  She had a little trouble maneuvering the pieces, as expected, but picked up a B and proudly declared "B is for BEER!"  The two OTs in the room gasped and looked at me like I was the worst parent ever.  I burst out laughing, turned bright red, and said "She's saying 'bear'.  I promise."  I'm not sure they believed me.

On the note of awkward pronunciations, her speech therapist is really concerned with Allie's word articulation.  During her annual assessment, she scored well on her receptive language (what she understands) and expressive language (putting together words), but scored at a less than 2 year old range for articulation even though she was 2 years and 10 months old at the time.

Allie has some strange word substitutions, such as "das" for "sky", "bite" for "bike", and "max n cheese" for "mac and cheese", but Jonathan and I don't believe that Allie is as behind as the test indicates.  When she's at school, she seems pretty on par with most of the kids in her class.  Her speech therapist is recommending that she transition to a speech-impaired preschool, which would be 2 days per week for 2.5 hours a day and would only include kids who have difficulty communicating.  Then she would get carted to her regular preschool by Jonathan or me.  This all seems like an awful idea to us.

I brought the idea of the specialty preschool up with Allie's teacher, whom we love, and she said that she never would have considered Allie to be delayed and that she seems to communicate fine with the other kids and the teachers.  I know she's not a speech specialist but she has spent the last 15 years or so with 2 year olds and that should count for something.

We pushed back on the preschool idea and instead increased the frequency of her current home-based speech therapy to once a week with alternating weeks at home and at school.  We also got her in the queue for outpatient speech therapy at the Children's Hospital where we currently do outpatient OT.  I look forward to having the Children's speech pathologist weigh in on the articulation.  It bothers me that she scored so low and, even though I think it's wrong, I don't want to just stick my head in the sand and ignore it if there really is a problem.

I'm currently in Japan for work and Jonathan is at home taking great care of Allie.  Here are some of the recent photos that he sent:

"Oh, hello Mama!"
Friends at last

I talked to her on the phone before she went to bed tonight and she informed me that I'm in "Jaaa-PAN" and that she had "1... 2... 3... 4... 5... 6... 7... 8... 9... 10 (slices of) pizza" for dinner.  Jonathan contests that it was only 7 of the 4 square inch pizza slices but Allie held firm.  Maybe she snuck some home in her pockets for later.

Sunday, November 3, 2013

Fall-filled Week

Allie has had a wonderful week, filled with Fall activities.

Last Sunday, Allie and I watched her BFF Abby run the Marine Corp marathon.  She loved watching everyone run by and got really good at cheering and clapping for the runners.

On Monday, her class went to a local orchard to visit a pumpkin patch.  All the kids rode the school bus and Allie really loved it.

Once the kids were unloaded, we took a hayride up the hill to the pumpkin patch.

Allie was a little overwhelmed by all her pumpkin options but she was up for the challenge.

She eventually found a pumpkin she liked that was "not too heavy."  She then went around and pumpkin "cheers-ed" all the other kids' pumpkins.

After a hayride back, she got to check out the animals.  I think the chickens were her favorite.

All the kids lined up on a hay pile for a class photo before getting back on the "cool bus" as Allie calls it.

On Thursday, Allie's school had a Halloween parade and she was very proud of her princess outfit.  Whenever she thought nobody was looking, she would twirl and twirl, admiring her dress.

Trick-or-treating at home was fun too, although she was incredibly shy and refused to say anything to the neighbors when she got to her door.  

On Friday, Allie and I brought Jonathan to the airport for his weekend trip to MN.  She was a really good sport about getting up at 4am to drive him.

On Saturday, Allie and I went to a local farm with our friends Chris, Shara, and their 1 year old Jake ("baby" as Allie calls him) that had themed kids areas and a petting zoo.  She liked exploring all the different areas.

And feeding the goats and sheep was awesome.

After the farm, we all went out for a great lunch and then home for a long nap.

This afternoon, Allie and I will be going to a musical at a kids theater nearby.  I hope she likes it!

Monday, October 28, 2013

Apple Picking

We went apple picking and we all had so much fun.  This is the same orchard we went to last year and it's fun to look at the pictures and see how much she has grown.  Last year, Allie couldn't even stand by herself and this time she trekked at least a mile and a half.  It has been a good year.

Allie liked to narrate the process: "Two hands... pull apple... in cart!  More!"

And of course we had to sample the apples...

Allie walked for an hour before she would agree to take a ride in the cart.

Turns out the cart was pretty fun.

Then Allie went on a pumpkin hunt...

... and admired the animals.

We walked by the already picked pumpkins on our way out and Allie thought it looked like a great place to rest.

After inspecting dozens of pumpkins, she finally found the one.  Dada was very relieved to have a decision made.  While we were walking to the car, Allie pointed out that we almost left without sticking our heads in this wonderful prop.  That wouldn't do.

Monday, October 21, 2013

Botox Update

School pictures (pre-Botox)

We are now two weeks post Botox and it is both good and bad.  The good is that Allie is really loose.  Her thumb is no longer tucked in, she can supinate her wrist, and her shoulder is in a very natural position.  Just looking at her, she looks fantastic.

The bad is that Allie was using her increased tone in place of strength and, now that the tone is gone, so is her ability to do a lot of the things she was doing before.  Going up and down stairs is really hard, as is picking up or holding things with Righty.

We were warned that Allie would seem really weak post-Botox, but we're optimistic that she'll gain enough strength independent of her tone that she'll bounce back.

We've been told to encourage crawling so we've started "M&M races" where Allie gets an M&M if she crawls through a popup tunnel tube in under 10 seconds.  Allie will do most anything for an M&M so it's working reasonably well so far and her crawling is looking good.

We are also doing lots of stretches, which Allie suddenly loves because she isn't so tight.  She was cuddling on my lap and cracking up tonight as Jonathan stretched all of her limbs.  I don't think she's ever cracked up during stretches before.

Wednesday, October 9, 2013

Water girl

This is a video of Allie yesterday, post botox.  I was trying to get her to drink some water so I gave her a cup and taught her how to fill it up herself.  Her shuffle to dump it out isn't from the botox; it's because the floor is soaked and she's trying not to slip.  This went on for about 20 minutes.

Allie is doing well today.  She has a little bit of tenderness around her injection sites but nothing that some children's ibuprofen won't take care of.

Tuesday, October 8, 2013

Botox Day

Today was Allie's botox injections and things went pretty well.  She was a great sport getting to the hospital, barely complained about not getting anything to eat or drink, and was an overall pleasant girl.  She even made a friend in the waiting room.

Once we got back into the OR prep area, Allie put on her gown and high traction socks and rocked the look.  We went for a brief tour to look at some paintings that the nurses had made about why they became nurses (pictured above).  My favorite was "I became a nurse because I didn't want to be a teacher... I needed a CHALLENGE!"  What?!?!  Who paints that on a little canvas and hangs it up at their work.  Weird.

After some more gown modeling, Allie's doctor came in to say hi and mark up the injection sites.  Jonathan and I had envisioned this to be a specific part of the process where the the doctor would pinpoint which muscles needed to be targeted.  To our surprise, the doctor got down on Allie's level and asked if she would like a flower or a heart.  Allie chose the flower and the doctor drew a big flower with her initials all over Righty.  Then Allie got a heart too on her right leg.  Apparently the doctor just wanted to make sure that she got the correct limbs.

After a 14 minute operation, and a 10 minute wake up, she was done and we were allowed back to see her.  She was not a happy camper when she woke up.  She started crying because she was groggy and wanted all of the stuff off of her.  She wasn't allowed to leave until she drank something but she refused.  Much crying ensued and the nurses brought in a bunch of bright and loud but soothing things to distract her, none of which worked.  

Eventually the anesthesiologist came in and said that Allie should just leave because being in the hospital was more upsetting than helpful.  As soon as we were out of sight of the doctors, Allie was fine.

We went home and spent the rest of the day lounging around, eating saltine crackers, and watching episodes of Thomas the Train.  It was a surprisingly sweet day.  She was cuddly, which she never is, and we got to just hang out with each other.

After a brief afternoon nap, she started asking me to sit next to her and saying "My... hand... hurts..."  Some Advil seemed to do the trick, but we shall see how she holds up tomorrow.  

All in all, it was a stressful day with a few bright spots, but I am mostly glad that it is over.

Monday, October 7, 2013

Botox Countdown

Allie has an early morning appointment tomorrow for her botox injections.

We have to be at Children's at 7am tomorrow morning and Allie can't eat or drink anything until her operation at 9am.  In preparation for her hunger-filled morning, we tried to stuff her with as much food as possible tonight.  She and Jonathan made chocolate chip cookies for dessert and Allie could not have been happier about it.  We all sat on the ground and watched them cook in the oven.  Once they were cool enough, we sat around her cupcake plate filled with cookies and took turns dunking our cookies in her cup of milk.  A quick bedtime story and a full cup of water and she was off to bed.

I am nervous about the anesthesia but I'm excited too see how the botox works for her.  While she was washing her hands tonight and the water was running over her fisted Righty, she looked at me and said "hand closed".  Maybe this will help.

Tuesday, October 1, 2013

Allie's KKI Story

The folks at the Kennedy Krieger Institute sent me Allie's story that will appear in full on their website and in part in their annual calendar.  They haven't finished the images yet but I like the story so much that I wanted to post it right away.

When Blowing Kisses is a Monumental Feat

An in utero stroke left Allie without the use of her right arm, but early, targeted therapy is helping her get it back.

Seeing 2-year-old Allie’s arm wrapped in a cast during therapy, you might assume she has a broken arm. But it’s actually her other arm that poses a challenge.

Allie suffered a stroke in utero that left her with limited movement in her right arm, and she now undergoes therapy that constrains her unaffected arm to encourage the use of the weakened one. It’s called constraint-induced movement therapy.

Not only does this therapy prevent favoring one arm, which would result in further weakening the other, but the repetitive movement of the therapy actually helps repair the brain in a process known as neuroplasticity.

When Allie first started therapy at Kennedy Krieger at 11 months old, she had no use of her right arm. “She flailed it, but she wasn’t grabbing anything,” says her mother, Michelle. Within a week of therapy, she began gaining control of her arm. Allie’s therapist, Jordan Sachse, made therapy fun for Allie, so she thought she was playing.

“When Allie saw Jordan, she would get so excited and start jumping up and down,” says Michelle. “You could tell how much Allie loved therapy.”

Allie continued therapy three days a week for three months, and made huge progress. She began moving her arm purposefully and playing with toys. “It was just a world of difference,” says Michelle.
Eight months later, she started another round of therapy, and Allie figured out how to open her hand and pick up objects. Now, she can string beads, walk around with a bucket collecting objects, and do all sorts of activities that come naturally to other kids. “She claps for herself. You can tell she’s just thrilled with the whole thing,” her mother says about the therapy.

She may never gain full use of her arm, but she’s come a long way. “Nothing cures hemiplegia or completely reverses the damage from stroke, but constraint-induced movement therapy can help patients like Allie regain function in their arms,” says Teressa Garcia Reidy, occupational therapist. “Allie has responded very, very well.”

Reidy and her team recently published a study on the benefits of using constraint-induced movement therapy in a clinical setting in the journal Physical & Occupational Therapy in Pediatrics. The study found the therapy benefited patients with a variety of causes of hemiparesis.

“We’re doing research with patients that’s very applicable to other clinics--it’s not just in a lab, it’s real practice-based clinical research,” she says.

Although Kennedy Krieger has been offering constraint-induced movement therapy for several years, the program for infants is new, and it is one of the few in the country offering therapy to very young patients. Michelle made multiple inquiries and couldn’t find a program that could help Allie, until she found Kennedy Krieger.

“We are always looking for new ways to serve the needs of patients,” explains Reidy, “And we realized there was a need for constraint-induced movement therapy for younger kids like Allie.” When Allie started therapy at 11 months, she was the youngest patient in the program.

“We didn’t want to wait and miss out on the progress she could make,” Michelle explains. Without this therapy, she says, “I don’t think Allie would have nearly as much functionality as she does…When she first started therapy, Allie had no use of her right arm. Now she waves, blows kisses, and gives high fives. I can't thank Kennedy Krieger enough.”

Monday, September 30, 2013

MN Visit

Allie and I spent all last week in Minnesota and had so much fun.  I had a conference in the area and Jonathan’s parents kindly agreed to hang out with Allie if she tagged along.  We got to see some much family: Gama; Papa; Aunt Holly; Uncles Joel and Jeff; cousins Erika, Anna, Elliot, and Noah; my friends Stefano and Bethany; and Murphy, Gama and Papa’s beloved dog.

Here are just some of the highlights:

Gama got Allie a princess outfit and Allie could not have been happier.  She wanted to wear it everyday.

Allie got to visit with her cousins Noah and Elliot several times.  Those young men are so wonderful with her.  It amazes me every time I see it.  Noah bought Allie a little glass pig, which she of course adored.  As soon as we got home, we put it on the shelf with another glass animal Noah bought her.  Allie looked up at it, pointed, and said “Thank you Noah!” 

Noah and Elliot 
 I think some of Allie’s favorite moments came from just playing downstairs with the cousins.

 Allie went to the zoo with Gama…

"Hey Gama, where are the real animals?"

She got to take her first boat ride, which she didn’t totally love but at least she tolerated.  She mostly liked pointing out the other boats but would freak out when any water splashed on her.

With all of the fun that filled the whole week, it was nice to just get some downtime in.  Allie loved going for walks with Gama and Papa,