Wednesday, July 31, 2013

More School for Allie

Allie starts in her new classroom at school in late August and we are so excited.  Her current class is wonderful but she's moving on to a bigger classroom with more kids and she'll be there an extra day per week!

On Monday, Jonathan and I got offered a full-time spot instead of our planned upon 3-day per week slot.  We had asked about our options a few weeks ago because Jonathan changed jobs and we weren't sure if his new position was going to be as flexible as his old one.  We knew Allie would love hanging out with her friends more, but were worried about how we would fit in all her therapy and doctors appointments if we switched to full-time.  We went back to the school's director and asked for a 4-day a week slot and were thrilled when they said yes!  I can't tell you how much I love this school; they have gone above and beyond to make everything work for us.

So, starting late-August, Allie will be there Mondays, Wednesdays, Thursdays, and Fridays.  We currently have her in-home and Children's OTs scheduled for Tuesdays and her PT and Speech are at home on Thursday mornings.  The Speech is every other week and we may try to have it at the school so her teachers can see what we're working on.  Our PT is first thing in the morning on Thursdays and we haven't decided if we want to move it (maybe to Tuesday afternoons), do it at the school, or just bring her a little late on Thursdays.  We will figure it out.

The class transition process this year has been much less anxiety provoking than it was for me last year.  At this time last year, we were still on edge about Allie's seizures, she wasn't walking, wasn't using Righty much, and was receiving special instruction on cognitive play therapy though our county.  Looking back, I was a mess!  Before she started in the new classroom, Jonathan and I meet with her teachers (mentioned here) and I remember leaving and thinking "yep, we definitely freaked them out."  We probably will have another one of those meeting with her new teachers just to make sure they know of her history with seizures and her physical challenges, but I hope we don't scare them nearly as much as we did last year.  This past year has done us all good.

We have also started talking about transitioning out of our county's early intervention program, which currently provides our in-home OT, PT, and Speech.  The program only formally applies until Allie is three years old, after which Allie has the option of going to a specialty preschool (a school with half physically disabled kids in her case) or extending some services in the in-home model that we've grown accustomed to.  Allie's PT is our coordinator suggested that we continue with the in-home model because Allie already has a school environment with typical kids that she is thriving in, but has warned that some of our services may not carry over.  She said that it seems unlikely that Allie will continue to qualify for speech, she is on the cusp for PT, and some OTs would argue that she shouldn't qualify for OT because she can do most of the "age appropriate" things (taking off lids, stringing beads, etc.) without using much of her right hand.  It seems silly to say that OT isn't needed when a kid can't use her right hand for much, but luckily we don't think our current OT has this outlook.  Our mean old OT, however, did.

We have our next developmental pediatrician appointment in a couple weeks and I'm excited to see how it goes.  The last one went so well that I'm trying not to set myself up for disappointment.  Luckily, Allie's Papa will be here then and she thinks everything is better when Papa is around.

Cute Play Date

Two hands without being asked 

Allie and her friend Natty from school had a fun play date on Saturday.  They were super cute together and even went down the slide arm in arm a couple times.

Action shots:



They found a little musical pipes area in the playground and Allie serenaded Natty with her favorite song, Old MacDonald.  "EEE... IIII... EEEE... IIIII..... YOOOOO!"


On Sunday, we were driving through the University of Maryland and asked Allie if this is where she was going to go to school when she was older.  She said, "Yeah... and Natty".  She's already planning her college experience... should I be nervous?

Sunday, July 28, 2013

KKI Photo Shoot

Friday was Allie's calendar photo shoot for the Kennedy Krieger Institute's annual donor calendar.  We trekked out to the Baltimore Aquarium before it opened for the day and she got a private our of the aquarium.  We spent most of the time in two spots: visiting with Calypso, a giant (500+ lb) Green Sea Turtle named Calypso, and sitting in during one of the training classes for the dolphins.

Calypso is not only a star at the aquarium, but has particular symbolism for the KKI folks because she lost one of her flippers when she was young.  She was rescued from the Long Island Sound when she was found to have hypothermia and a horribly infected left front flipper.  Her flipper had to be amputated and her caregivers didn't believe she could make it in the wild without it, which is how she ended up at the aquarium.  (You can read more about Calypso's story here.)

Allie spent about an hour posing with Calypso and learned lots of fun facts during the process.  She learned that Calypso loves Brussels sprouts and carrots and that the fish like to follow her around to wash her.  At one point, Calypso went way down to the bottom of her tank and fell asleep.  Whenever Allie goes to bed, she gets her stuffed Baby, a cup of water, and a book.  When Calypso fell asleep, Allie noted that she was "night-night" with her water but no book!  She started asking the aquarium staff to get her a book!  "More book!  More book!"  Allie was just looking out for her new buddy.

One of the aquarium's photos of Calypso

I didn't get any photos of Allie with Calypso but they said they would send me copies of all of theirs.

The next stop was to visit the dolphins.  We had kind of hyped Allie up on the idea of getting to pet the dolphins, which turned out not to be true.  Oops!  So, when we got to the big tank to meet them she wanted to get in the water right away. "Allie in!  In water!  Allie in water!"  But, what Allie did get to do was participate in the dolphins' training class.  A trainer came and taught Allie how to give hand signals to the dolphins, including how to ask the dolphins to blow bubbles (two fingers out like you were telling someone you wanted two of something) and how to make the dolphins nod yes (flicking your pointer finger up and down).  Allie was a natural and really liked making the dolphins blow bubbles.  Allie loved it and I got to take lots of photos during the class.






The aquarium's media person said that they would really like to share Allie's story too, if we didn't mind.  Which, of course we don't.  It was a really fun morning and a great experience for her.  Allie then got to go to school and tell all her friends about hanging out with Calypso and the dolphins, which I think made it even more fun for her.

Allie's story and calendar spread should be done by late-August or early-September.  I can't wait to see it and share it then!

Thursday, July 25, 2013

California Trip

Allie and I both had a fun and busy week in California.  Here is a quick photo rundown.

She was much calmer on the flights out than I expected her to be:

Chilling with Baby on the flight out
It was fun to see her playing in all the places I played when I was little.  This is at my grandma's house and I used to love to climb that tree next to her.


She also enjoyed relaxing in the shade with my grandma during our BBQ:


Allie got a lot of water-play in:

"Thanks for blowing this up, Mimi!"

She even got to play at a new splash park:


And Hannah and Mikko did such a great job babysitting her.  She really loves them:



They even made an Allie table where she could eat and play as she pleased:

"Snacks and trains!  What more could a girl want?"

We also got to spend a lot of time with the rest of our family but I wasn't very good about taking pictures.

On the way home, she made fast friends with the girl sitting in front of us on the plane.  They were busy comparing snacks and Babies, which gave the other mom and me a nice break.

"You like cheese?!?  I like cheese!"
When she was sitting with me on the plane, flipping between these two pictures kept her very entertained.

"Where's Allie?"
"Boo!"

 I'm very glad that we got a chance to visit.  

Tuesday, July 16, 2013

Family Fun


The past few days have been a whirlwind of fun family visits.  Mikko finished up his two weeks with us and Allie and I brought him to the airport on Saturday.  We were all sad to see him go but we quickly perked up because Allie's Gama, Auntie Sam, and Cousin Louie were coming into town just a few hours later.

Can you believe how big Louie is already?  I'm proud to say that Louie pulled up to standing for the first time in our living room!


It was great to see all of them. 

Early Monday morning, Allie and I left for an impromptu trip to California.  I got a chance to attend a conference for work in the Bay Area and Mikko and my sister Hannah kindly agreed to babysit Allie so that she could come too.  We just booked our plane tickets last week so I didn't even have a chance to freak out about traveling alone with her. Luckily for me, she was a great traveler and we arrived safe and sane last night. 

Allie was so excited to see Mikko ("Mimi" as she calls him).  My mom gave her a couple squirt guns and Allie mischievously sat in her car seat with a squirt gun in each hand and kept saying "Hello Mimi..."  I think she had some evil plans brewing for those squirt guns.  When we finally got to the house, she was beyond giddy to see all the toys and trains that she got to play with.  She would burst out laughing every time Mikko looked at her.

Today is Day 1 of Allie babysitting for Hannah and Mikko.  I hope everything goes well and can't wait to see her tonight!  

Friday, July 12, 2013

Fun with Friends


I keep talking about how much Allie loves going to school, but she really really loves it. Her teachers send out a monthly e-newsletter and the above photo was in this month's edition.  She is having such a great time just splashing around with her friends.  

Allie has had a great past two weeks with her Uncle Mikko visiting and will be sad to see him go tomorrow.  Luckily, Gama, Auntie Sam, and Cousin Louie are coming into town tomorrow to keep her entertained until Monday morning.  Then, Allie and I fly out to California where one of my business trips is conveniently located close enough to my family to make a for-fun trip out of it too.  We'll be there until the following Monday, so we'll have lots of time for visits.  We have a busy week and a half ahead of us but we are looking forward to seeing family that we don't get to see nearly enough.

Allie's photo shoot for KKI was pushed back until we get back from CA.  We will be doing it at the Baltimore Aquarium before it opens for the day so that Allie can play with the dolphins and turtles all by herself.  Lucky girl.    

Monday, July 8, 2013

Poster Child


When Allie was wrapping up her second round of constraint therapy at the Kennedy Kreiger Institute in Baltimore, one of her therapists approached us about potentially featuring her in the KKI calendar that they send to donors every year.  This calendar features twelve “inspiring stories” of kids who have flourished because of the care they received at KKI.  The 2012 features totally made me tear up. 

I am so proud of Allie and all that she has accomplished.  As I read stories of these other kids---these other families---that have gone through the same uncertainty that we went through, it really makes me pause and realize how lucky we are.  Back in October of 2011 when Allie was first diagnosed, we had no idea what she would be able to do.  I never thought that she'd be doing as well as she is and I really think we have this KKI program to credit for some of it.

One of the calendar people called me a few weeks ago to do an interview and talk about Allie.  Their photographer got in touch with me today to arrange a photo shoot for Allie at the Baltimore aquarium, which we will likely do this Thursday.

She's a star.  I can't wait to read her story.

Tuesday, July 2, 2013

Mikko Visiting

My wonderful brother Mikko is in town visiting for two weeks and Allie is celebrating by being sick.

She was thrilled to see him when he got in on Saturday night.  She gave him a quick high-five and proceeded to stare at him the entire rest of the night.


Allie basically wants to be him.  She sees that he's drinking milk so she wants milk.  He took a bite of dinner so she'll take a bite of dinner.  Every time Mikko would look over at his parrot, she would stop what she was doing, tilt her head to the side and give him the biggest smile she could muster.  He read her a couple stories and she was off to bed, happy as could be.

The next morning, however, she woke up with a totally out of the blue 102 degree fever.  Nothing else was discernibly wrong so she just took it easy all day.

Mikko read her books in our bed.


She watched her two favorite Baby Einstein videos, Baby McDonald and Numbers Nursery, over and over again while sprawled out on our couch with her stuffed bunny Baby, our cat Maisie, a blanket, and her "sick pillow".  The "sick pillow" is a Jonathan childhood staple.  Every time he would get sick, his mom would set him up on the couch with his "sick pillow".  He was devastated as an adult to discover that the "sick pillow" was just a normal pillow from his bed with a new pillowcase.  Trickery!


Towards the end of Sunday, she started telling me that her throat hurt (rather, she was saying "chin owie" but rubbing her upper throat---how cool is it that she can tell us where it hurts?!?!).  Mikko did a great job of keeping her entertained between errands that he and Jonathan were running.

She woke up fever-less and mostly fine seeming on Monday but she had to stay home from school anyway because she had a fever within 24 hours.  Much more screen time ensued.  She watched McDonald and Numbers over and over again until I could not take them anylonger.  We went down to the basement to watch Thomas the Train for her first time and she was literally on the edge of her seat.  During one of the episodes, there was a boulder rolling down the train tracks and she started yelling "Oh no, choo choo!  Oh no!"


She seemed exhausted after all the boulder excitement.  I love how Maisie the cat follows Allie around these days.  They still seem mutually distrusting of each other but they sure do like one another's company.


Allie seemed mostly fine today and she's spending some time with Abby while Jonathan and I catch up on work.  Of course, I'm blogging right now instead of working, so maybe this isn't working so well.