Saturday, December 29, 2012

"Yeah!"


We got back from CA yesterday; we had so much fun!

I can't believe how much Allie grew up over the past two weeks.  She is now a comfortable walker, toddling all around everywhere she goes.  She is talking a lot too.  The best addition to her vocabulary is "Yeah!"  Up until now, she would only say "no" to things and we would joke that an absence of a "no" is a "yes".

Yesterday on the plane, I asked if she wanted to read a book.  She said "yeah".  I asked if she wanted to read the Olivia book and she said "Yeah!"  Then, she changed her mind and said "No, no... baby" meaning that she would rather read her peek-a-boo baby book that we brought too.  I put away the Olivia book and grabbed the baby book and she was so happy that I understood what she wanted.  It was cool being able to have a conversation with her.

Allie does seem a lot more opinionated lately and I think that we may be entering the terrible twos.  The other night at dinner, I took a chopstick away from her and she slapped me in the face.  I was shocked and she burst out laughing. She has thrown a few tantrums since then and I think that Jonathan and I are learning to be firm, but I'm not looking forward to tear-filled fights to come.


Sunday, December 23, 2012

Allie in California

Allie, Jonathan, and I are all in CA visiting my family for Christmas.  Allie is loving all the attention.  But, in typical Allie fashion, she got an ear infection while traveling.  I would love for this girl not to get an ear infection during at least one trip.

We went to an urgent care facility tonight and the nurse gave Allie a homemade pillow as a gift.  Allie loved it and was doing laps up and down the hall clutching her pillow while I filled the nurse in on Allie's medical history.  She was totally shocked that babies can have strokes but I'm getting pretty used to that reaction.

Allie was leading the way to a private exam room when she decided that she was too tired to go on.  She threw her new pillow on the ground, plopped down next to it, said "Night Night!' and rested her head on the pillow.  I laughed and said "Allie, you can't go night night in the middle of the hallway."  I picked her up and she mischievously giggled all the way to the exam room.

After the exam was over, Allie walked out to the main receptionist where we needed to check out.  Allie gave her a big smile, waved, and said "bye bye".  The receptionist said "she sure is a happy little girl, especially considering her ear infection."


Allie pretending to go Night Night while waiting for her ear exam.
Earlier today, much of my extended family went on a brunch cruise around the San Francisco bay.  Allie (and Jonathan and I) had such a great time.  Allie is definitely a buffet kind of girl.  She was shoveling everything into her mouth as quickly as she could and she ultimately decided to ditch the fork in favor of getting the food into her mouth by the handful.  My favorite part about the cruise was that Santa was on the boat.  Allie was less than thrilled:

I will NOT sit on his lap!
Let's go over there instead




Friday, December 14, 2012

Speech Eval and Parent-Teacher Conference

Big Walker (I love when she spots the puddle
and shouts "Wawa!" with complete surprise)

Allie had part 2 of her semi-annual speech evaluation yesterday and it was great.  The speech pathologist is allergic to cats so we went to her office for the meeting.  Allie was such a big kid.  She was walking all around this big room, exploring all the toys, asking us to get the toys that were out of reach, throwing mini-tantrums when we wouldn't immediately get said toys for her.  She seems so much older now that she is walking around everywhere. 

The pathologist and I filled out a paper evaluation of what Allie can and can't say and does and doesn't understand.  I am happy to report that our 22 month old Allie is scoring at 20 months for her receptive language (what she understands) and 24 months for her expressive language (what she says).  The pathologist said that these reports are not an exact science but Allie's scores show us that she approximately where she should be for her age.  It's strange because Jonathan, Allie's teachers, her therapists, and I all think that Allie understands everything we say but we are worried about what she can/chooses to say.  I would have expected the scores to be reversed.

It seems like Allie has a handful of words that she uses a lot.  However, we created a full list of the words that Allie says without prompting and she has over 40.  The pathologist said that kids should have 50 words by 2 years old, so Allie is on the right track.  She was also impressed that Allie is stringing 2-3 words together (for example, "more water please" or "it's a book") and said that kids aren't expected to do that until after 2.  She was also impressed that Allie says the beginning and ending sounds of some words because a lot of kids don't do that well until later either.

We will be doing another evaluation a couple months after Allie turns 2 to see how things are progressing.

It was a great evaluation but we're still carefully watching her speech development.  Although this is one of the areas that Allie is doing well in, it is perhaps the area that I am most concerned with.

On Wednesday, Jonathan and I had our annual parent-teacher conference with one of Allie's daycare teachers.  Moral of the story: Allie is kicking butt at everything.  Her teacher says that she's happy with how Allie follows instructions, learns rules and routines, and plays with her friends.  She commented that Allie is getting more and more independent, especially now that she's walking, and that Allie isn't getting as frustrated as she used to.  We see her frustration lessening too as she is gaining the ability to tell us what she wants or just do what she wants herself. 

I was dropping Allie off this morning and I caught some of her playing WITH instead of NEXT TO the other kids.  It seems like she is more into this than the rest of the kids are.  She walked over to a toy table next to a boy who was stacking blocks.  She picked up a block, stacked it on his block, and smiled at him.  He glared back at her not finding her nearly as charming as she was being, grabbed the other block that was in front of her, and walked away.  Allie looked up at me and laughed as if to say "He thinks he can get away from me that easily!"  Then she turned and walked after him.

I said goodbye and left, but I peaked in the window on my walk to to train.  Allie and the boy were racing cars together and Allie was crashing her car into his.  This time, he seemed to be enjoying it.

Sunday, December 9, 2012

Standing Up

Check out this amazing video of Allie getting herself up to a stand without any assistance. This is a totally big deal that she figured out all on her own.


Saturday, December 8, 2012

Daddy's Girl

"Where's Dada?"
I had a business trip in Detroit this week and missed Allie desperately during it.  I got back home on Tuesday night after she had already fallen asleep so I had to wait until the next morning to see her.  As soon as I heard her waking up on Wednesday morning, I rushed in there expecting a warm reception.  Instead, she smiled at me, looked over my shoulder, and said "Dada?!?"  Not exactly the greeting that I was hoping for.

Allie has been absolutely Dada obsessed lately.  She's always looking for him, asking about him, talking about him, pointing him out... I'm starting to get a little jealous!  I remember about a year ago when Allie was all about Mama.  Her physical therapist joked that Jonathan had it coming and before he knew it, the admiration would shift to all him.  She was completely right.  

SMO Controversy

At Allie's semi-annual physical medicine and rehabilitation checkup, her physiatrist recommended getting an ankle and foot brace known as an SMO to help stop her right foot from turning out when she is walking. (By the way, she is walking so much these days!)  I reported the SMO recommendation to Allie's physical therapist and she was shocked.  She said that she is against bracing kids until they have been walking comfortably for at least two months because sometimes strange movements correct themselves.  She was also surprised that a SMO was suggested for her right leg but there was nothing recommended to even-out the newly added height to her left leg (such as a prescription insert).

The PT asked if we would be comfortable waiting until late January to go to the orthopedist for the brace.  She said that we may want to get some over-the-counter inserts to try out first and we will reevaluate in a month or so.  The physiatrist suggested that we check with Allie's PT to get her thoughts on the SMO and I'm very glad we did.

The plan is to work on Allie's strength training (walking up stairs, step-ups with her right leg, squats, and lots of walking) to see if she is still turning her right leg in a month or so.

Language Update

Allie had a speech evaluation a couple weeks ago and I don't think I ever wrote about it.  The speech pathologist (who has been peripherally following Allie for the past year) was thrilled with Allie.  She said that Allie is making all of the age-appropriate noises that she should be making.  Often, kids with strokes have speech problems not just because of the neurological issues but because they can't move their tongue and lips in the typical way.  It doesn't look like this is a problem for Allie---yay!

Jonathan and I have been keeping a list of Allie's words and her approximations for them (e.g., she says "water" as "wawa").  The pathologist said that kids are supposed to have 50 words by age two and Allie at 21 months has already exceeded this---another yay!

However, most of Allie's words are nouns and we want to work on improving her usage of verbs.  I think this is more of my issue than hers.  I noticed that I mostly point out nouns and I have been trying to get myself to describe actions more than things lately.  She seems to be catching on quickly.

We are getting another speech evaluation this month so that Allie can get a formal evaluation instead of the qualitative evaluation that we got last month.  I think that things are going better than we could have hoped for considering that the stroke wiped out all of what would have been the language center of her brain.  She continues to amaze me.

Perseverance 

We increased Allie's cognitive therapy from once to twice a month a couple of months ago because she was getting really frustrated when we pushed her too hard.  The cognitive teacher is amazing and has shown us how to be firm with Allie while pushing her to do a little more than she wants to.  For a while, it was really hard.  Allie would get pissed and throw herself on the ground crying in protest.  Well, I think she is making good progress on this.

We were playing with some wood puzzles tonight that she normally has a really hard time getting the pieces into.  I don't know if this struggle comes from still slightly weaker fine motor skills or a difficulty in visual-spatial skills (which is also common for stroke kids), but Allie usually gets frustrated that the pieces aren't going in easily and gives up.  Tonight, she was determined to get these puzzles together... and she did!  There was a lot of grunting, a little sighing, and a lot of maneuvering, but she put together all three puzzles (about 20 pieces total) a couple times ALL BY HERSELF.  I was struggling not to jump in and help her, especially when she would look up and me and ask in her cute voice "Elp?" (aka, help?).  I somehow restrained myself offering only verbal cues ("Twist it!  Scoot it over!") and I am so glad that I did.

She figured it out and gave me a self-satisfied high-five after she finished each puzzle.  I'm glad she was able to work through her frustration and keep at it.  She's on her way to be a master puzzler.

Wednesday, November 28, 2012

Neurology and PM&R Appointment

Don't take my post-doctor macaroni!

Allie had her semi-annual joint Neurology and Physical Medicine and Rehabilitation (PM&R) yesterday.  I had an all day work meeting that I couldn't miss so Jonathan and Allie went without me.

The only problem: they were both sick.  We even tried to reschedule but the Children's Hospital appointment person told Jonathan to give her some Tylenol and drag her in.  Otherwise, we wouldn't get another appointment until January.

Here are some key updates:

- Allie will be getting a Supra-Malleolar Orthosis (SMO), which is basically an ankle brace  (shown to the right).  When Allie walks, her right foot turns out a little bit.  I don't know what it is about this brace that makes me totally uncomfortable.  I think it is that I spend so much time focusing on her hand that I want to think that her leg isn't impaired.

- The neurologist is petitioning to our insurance to continue treating Allie.  She was unimpressed with some of the guidance that the new neurologist had given us.

- Following the previous point, our neurologist does not think that Allie has a mirochondrial disorder.  She said that Allie would be having a lot of serious health concerns and Jonathan said that she seemed shocked that someone would suggest such a diagnosis.

- Allie will be getting a maintenance EEG to check for seizure activity in a few months.  This is just a routine check to make sure that Allie isn't having any asymptomatic seizure activity.

- Now that Allie is officially off Topamax, we upped her Trileptal level slightly to adjust for her recent weight gain.

- Still no botox.  The PM&R doctor was impressed with Allie's overall muscle tone and he thinks that Botox would be too much.

It was a good appointment and what I love most of all is that Jonathan did it completely without me.

In other news, we are converging on a start date for Allie's second round of constraint therapy.  We will be going 3 times a week for 8 weeks starting in late February.  She has been doing so much great stuff with her right hand and I am so excited to see what another round of constraint will do.

Thanksgiving


Allie had an amazing Thanksgiving.  We all went to MN to visit Jonathan's family and my dad (Granpa), stepmom (Grandma Bets), sister Hannah, and brother Mikko joined us all out there.

Allie got to meet her new cousin Louie and she loved him.  Aside from her cute kisses in the video above, my favorite Allie and Louie moment was when she leaned over, gently tapped Louie's diaper, looked up at her Auntie Sam and said "Poo poo!"  Her cousins Noah and Elliot kept her busy with lots of fun.

Allie's favorite Thanksgiving foods were sweet potatoes and cranberry sauce.

The day after Thanksgiving, we went to the Holidazzle lights parade though downtown Minneapolis.  I thought Allie would love it.  Turns out, it scared the crap out of her.  Each light-laden float had a sign that preceded it.  As soon as Allie saw a sign marching down the street towards her, she started shouting "no no no NO NO NO NO NOOO! NOOO!"  Once the sign passed, she would shout "bye bye!  Bye bye!"

A highlight of the trip was when we got to meet a young lady in Allie's cousin Erika's college dorm who also had an in utero stroke.  It was so amazing!  If I were to meet this woman on the street, I never ever would have guessed that she had had a stroke.  She said that she has a little less muscle mass on her whole right side (which I couldn't tell) and she can't independently move her fingers (which I also couldn't tell).  It took me several minutes of talking with her to even be able to tell if it was her right or left side that was impaired.  She was gesturing with both arms, opening and closing her hands, and being overall AMAZING.  I have never been so encouraged.

It was a fun trip.  My only complaint is that Allie now wakes up shouting "Papa!" in search of Jonathan's dad.


Thursday, November 15, 2012

"Big!"


Allie was a super star today.  I intentionally didn't tell her physical therapist because I wanted her to see it for herself.  I opened the door for her PT, stepped out of the way so she could see Allie standing there by herself, and watched as Allie walked over to her to say hi.

Allie then showed off by taking 20 independent steps before losing her balance, which is the most that I have seen.

Later in the night, after I filmed the video above, Allie and I cuddled up to watch it.  She got the biggest kick out of watching herself and she would laugh hysterically at the end where she tumbles into me.  She kept shouting "More! More!" We watched the video at least a dozen times, laughing just as hard every time.

Tuesday, November 13, 2012

We have a walker!


Allie has figured out how to walk!  She still wipes out occasionally but she figured out her balance and, if she goes slowly, she can walk.  We are so happy.

I picked her up from daycare last night and her teacher said that she had something to show me.  She said, "Hey Allie, let's go wash our hands."  At that, Allie left the table that she was playing at and walked all by herself over to the sink that is about 10 feet away.

It have never been so proud.

Today, we finally met Allie's new weekly OT and Allie really seemed to like her.  She is young and upbeat, which seems to jive with Allie.  And, she was so impressed at all the stuff Allie could do.  She kept pointing out the good stuff like "Did you see how she uses Righty to grab onto surfaces to pull up?  She's doing a great job using her right arm to counterbalance herself!  I'm amazed that she engages Righty when you ask her to!  I can see why constraint therapy would work so well for her---she has the functionality, she just needs the motivation."  I like the positivity instead of the old jerk OT who always harped on what Allie couldn't do. 

Allie and I spent the rest of the morning playing in the backyard and cleaning up some leaves.  After playing in the leaves for over an hour, she was covered in mud and hungry.  After a quick lunch and an outfit change (she let me change her shirt while she was standing up by herself!), it was off to a nap.  

It has been a good couple days. 


Monday, November 12, 2012

Uphill


Allie is so close to independently walking that I can't believe she's not doing it already.  She can stand all by herself perfectly balanced (she will even lift her hands above her head and show us how big she is while standing) and take intentional steps with long pauses between them.  The only thing she doesn't have is confidence that she can keep it going.  After a couple of perfect steps, she careens into the nearest object like she needs to catch herself. 

Her PT suggested that we hold her wrist while walking instead of letting her clutch onto us.  This is supposed to make her realize that she doesn't need to hold on to walk and it gives us more control of when to let go.  Allie seems to be responding very well to this and will keep walking a few independent steps after we let go (and until she really realizes that we aren't holding on anymore).  You can see Jonathan working on this strategy while he and Allie did some uphill laps yesterday at the park.  When they would get close to me at the top of the hill, Jonathan would let go and Allie would walk right on over. 

We continue to work on Allie's overall strength by making her climb up the stairs at home several times a day, never-ending right leg step ups on a little bench (like step aerobics!), and lots of assisted walking everywhere she goes. 

I'm sure that walking is just going to be like everything else she does.  She will fight it, fight it, fight it, until all the sudden she's running around.  I remember pushing her so hard to sit up on her own and then it just clicked and we couldn't keep her down.  I would bet that this is going to be the same way.

Allie's swim lessons started back up a few weeks ago.  This Saturday, the teacher noticed that Allie wasn't quite moving the way that a typical kid would and she gently inquired into how she could help.  Jonathan said that Allie has cerebral palsy from a stroke, and the older woman said "Nooooo!  I had a stroke a couple of months ago.  I'm going to try to find some extra exercises and props to help her!"  It looks like we have a new addition to Team Allie. 

Thursday, November 8, 2012

Sick Family


Allie's Halloween illness spread to the rest of us and Jonathan and I have been pretty under the weather for the past week.  Allie, however, has been very busy.

She voted.  My dad was shocked that they let Allie vote with an elephant shirt on.  I was shocked that they let a baby vote.


We went straight from voting to pick up her new Benik splint!!!  After several months of waiting for our insurance, we got the stupid $162 dollar splint.  I seriously wish that we had just paid for it out of pocket but this was a good precedent to set with our insurance.  Hassle aside, I really like the Benik.  Allie is much more willing to bear weight on it and wiggle her fingers around.  It is bulky and it won't be great to wear all the time but it seems to be improving her confidence. 


She crawled all the way through the tube with it on.  I had never seen her crawl so far before.



Her balance is getting better too.


And, she really likes drawing.


Here are some other recent photos of Allie.

"I'm a Jack-O-Lantern!"

"But I'm way cuter!"

Inspecting the menu

Eating tomato soup, and not getting much in

Here's to hoping that we all feel better soon!

Wednesday, October 31, 2012

The Grouchy Ladybug

Halloween... FAIL!

Allie got sent home from daycare today for being unusually grumpy with a mild fever.  She had a fever over the weekend but we thought that she was all better.  Apparently we were wrong.

She skipped out on her Halloween parade in favor of a quick trip to the doctor for a checkup.  One quick peek into Allie's ear and her doctor jerked back and declared: "Infected.  Definitely infected."

After much crying, a trip to the pharmacy, and a train and two bus rides, we were home.  To the left is Allie sleeping on my chest on the bus.

Once we got home, Allie fell asleep for a couple hours.  We were hoping that she would wake up happy enough to play in her costume and be adorable.  No such luck.

In non-Allie news, we got so many trick or treaters!  We went through 7 bags of candy and then had to shut off all the lights, take our candles out of our pumpkins, and take the gigantic spider off our porch.  Then we went and hid in the basement while the little kids rang our doorbell.

Lesson of the night: kids do not like 100 Grand candy bars.  Several kids accidentally grabbed them out of our candy bowl and then threw them back in like they burned their fingers.

Happy Halloween! 

Tuesday, October 30, 2012

Allie Backlog

Allie has had quite the week!

On Thursday night, she showed Dada her new balancing skills applied to walking.  She got up to five independent and balanced steps between furniture.  Below is a video of one of her three step laps.  Note at the end how she is trying to suck on the peg... sometimes I think she still misses her pacifier.


On Friday, she had a fun day at daycare and a relaxing evening at home with Dada.  I had my first (of two) two-day work meetings on Friday so Jonathan was basically on his own for Friday-Monday.

Saturday morning was her first swim class of the season.  To the left is a picture of Allie before class.  We were very excited about the swim classes because the pool is within walking distance from our house.  However, there was a substitute teacher running the class and she was super intense; probably too intense for a baby swim class.  She kept insisting that Allie hold onto a floating barbell in a particular way, but it was difficult for Allie to do.  She kept trying to readjust Allie and Allie was getting more and more frustrated every time the teacher touched her.  Hopefully it will be better this weekend when the real teacher is there.

Saturday night, Jonathan and I stocked up for the impending Hurricane Sandy and I got ready for my second two-day meeting.

Allie spent most of Sunday outside with Dada raking leaves with her own mini-rake and sorting rocks on our patio.  Jonathan was trying to make sure that the gutters were clean and drains weren't blocked for the storm.  My meeting somewhat imploded because of the storm and only 5 of the 15 people showed up and a couple of them left to try to get out of the way of the storm.

We cancelled the Monday the meeting and held a teleconference instead.  I am sure that the group heard a few Allie screams in the background, but that's OK.  I once had a conference call when Allie started laughing hysterically for no apparent reason.  Before I knew it, everyone on the phone was laughing too.  That baby laugh is pretty infectious.  

I was nervous about the storm knocking over one of our gigantic trees onto our home and crushing us in our sleep, so we set up camp in the basement.  We brought Allie's mattress down and bumped it into a corner.  We then put the backup mattress that I was using next to Allie.  Jonathan got the couch.  To put it mildly, it was a miserable night.  The cats were circling us and freaking Allie out.  I swear that she woke up every hour.  At one point, Jonathan decided that I was not doing enough to keep Allie happy.  Instead of actually doing anything to help, he laid on the couch and huffed every time Allie made a noise.  He seriously could have been blowing up balloons.  In one of his sweeter moments, he took the picture of Allie and me to the left. 

Luckily, we made it through the storm safely and just a little sleep deprived.  Allie is excited to get back to daycare tomorrow!

Thursday, October 25, 2012

Free Standing!!!


Allie had a vigorous physical therapy session this morning and afterward we went outside to enjoy the warm-ish weather and play.  She didn't think I was watching but I caught her standing up by herself and then letting go.  Here is a video of her free standing, not holding onto anything, and testing out her balance.

We are so thrilled.  She is going to be independently walking so soon!

Tuesday, October 23, 2012

Hello? Allie Calling!

Allie is pretend playing so much.

She makes soup by putting her toy vegetables in a toy pot, stirs them with her toy spoon, tastes her soup, indicates her approval with a loud "MMMMMMmmmmmm!", and then offers a sip to whomever is around.  Her cognitive play therapist saw Allie doing this the other day and said "Wow, I'm going to have to start making up reasons to keep working with you!"

Today, Allie re-discovered a phone on one of her older toys and immediately picked it up it up and started saying "Owl? Owl?" (which I think means "Hello? Hello?").

It makes me happy to see her exploring new things and playing with old toys in new ways.

In other news, Allie had her second session with her new Children's Hospital OT today.  Allie was majorly distracted by a 15 month old boy who was getting PT in the same room, but she still managed to hide mini-bears in a giant tub of raw lima beans and then find them again and put them away... all with Righty.  It was not the most productive session, especially after the boy got a toy bus to play with (Allie was so jealous), but I do really like the OT.

Sunday, October 21, 2012

Allie is a Big Cousin!

Allie became a big cousin today to Louie Jameson, Jonathan's sister Sam and her husband Blake's brand new baby boy.  I must say, Allie did seem older and wiser today.  I think that she is trying to live up to her new role.

Lately, Allie has been doing a lot of coloring with markers and I think it has made a big difference in her Righty usage.  We have Allie put the cap-end of the marker into Righty, and then she pulls the marker out of the cap with Lefty, colors to her heart's desire, and then re-caps the marker and sets it down when she is done.  Between the coloring and climbing up the stairs, Allie's Righty use is all over the place.

She was hanging with her BFF Abby last night while Jonathan and I had a date night, and Abby took this video of Allie during her bedtime story.  She was sitting on Abby's lap, holding her stuffed bunny with Lefty, and turning the pages of the book with Righty.  I am so happy that Righty is becoming something that she can count on and use when needed.





Wednesday, October 17, 2012

Anything... for a cookie


When Allie was finished with her dinner tonight, we gave her a Fig Newton as dessert.  Jonathan put it in Righty and, instead of quickly moving it to Lefty, she just ate the cookie with Righty.  She was as proud of herself as we were.  


Tuesday, October 16, 2012

OT Revolution

Allie had her last session with the mean county OT today and her first session with the new Children's Hospital OT.  It was an OT-packed day.

The former went as well as it could go.  Things were professional.  It was a little weird because she barely even acknowledged that it was the last time that she would see Allie.  See seemed pretty relieved to be walking out the door.

The new Children's OT, however, is great.  She seemed very nice and playful and Allie seemed to like her.  I was shocked at how well behaved Allie was for the new OT because it was an early afternoon session, she was on a nap-strike and hadn't slept, and she got her flu and make-up immunization shots that were off schedule from her ACTH days.  And still, Allie stacked blocks, smashed play-doh, and strung beads with her.

We have our first session with the new county OT in 2 weeks and will be seeing the Children's OT every other week.  Since Allie doesn't have county OT next week, we will be padding in an extra Children's OT session.  I hope it works well.


Friday, October 12, 2012

From Lefty to Righty

Jonathan's dad Tom (better known as Papa) is in town visiting and Allie sure is showing off. 

The four of us sat in Allie's playroom tonight and played catch.  She has an amazing throwing arm and throws the ball right at us.  At one point, we missed a catch and the ball rolled under the furniture and she started giving Dada the pouty face and saying "ball!" while pointing for him to go get it.  Jonathan said "Say please," and she responded with "pwweeezzz."

She took a break from catch to get a fake drink of milk from her toy baby bottle and decided to offer some to her little people (the luckiest of them is shown in the photo to the left).  She was trying to figure out how to both hold the person and give her a bottle all with one hand.  Her first attempt was to pop the person's head in her own mouth and then give herself a fake drink.  Yum.  I took the person and put her in Righty and she realized that she could use both hands for this.  Not to overstate it, but I think it was an epiphany for her.

After a couple bottles of fake milk, she took the person out of Righty to better play with her.  She then decided that she would like the person back in Righty so that she could give her more milk.  She started by trying to push her into Righty but Righty was fisted and she couldn't get her in.  So, she thought about it, opened her fingers, and put the person in.  This was the first time that Allie ever put anything into Righty!

The three of us burst into cheers and clapping so, of course, Allie started cheering and clapping.   She is a praise junky, after all.

Allie then crawled all the way up our steep stairs to her bedroom by herself (with Jonathan guarding for safety) and picked out a bedtime book for Papa to read her.  He got about half way through the book when she lost interest, scooted over to her crib, and said "Night night."  Show off.

Tuesday, October 9, 2012

IFSP and New Goals

Stair climber
Today was Allie's annual review for her Individual Family Service Plan (IFSP), which details the services that she gets through our county's early intervention program.  I can't believe that it has been a year since she started the program.

I remember the initial evaluation and how I had no idea what was going on.  We didn't know what to expect.  Jonathan didn't even stay home from work for the appointment because we really didn't think it was a big deal.  We had just had the MRI, found out about the stroke, and had the evaluation for services within a couple of days.  Looking back, we were completely overwhelmed.

The initial evaluation was a couple hours long and, luckily for me, Jonathan's mom Bonnie was in town and she was able to juggle Allie while I was answering their dozens of questions about what I want Allie to be able to do.  How was I seriously supposed to answer those questions?  I hadn't even wrapped my mind around the idea of Allie having a stroke, I had no idea what her prognosis was, and I didn't even know what typical babies do.  Still, I sat there and tried to envision where I wanted Allie to be in 6 months and a year from that day.  It all felt like make believe.

I remember asking one of the therapists if all these seemingly lofty goals were at all reasonable.  I really had no clue.  This woman had an extreme look of apprehension while trying to think of what to say, and that gave me a more honest answer than her response did. 

It was cool to look back over these goals that I don't even remember writing and see how far Allie has come.

For physical therapy, Allie met all of her goals except independent walking.  Some of her achieved goals include pulling up, cruising, and transitioning between pieces of furniture.  Her new goals include independent walking (again), walking on different types of surfaces, and being able to get around on stairs.

For occupational therapy, Allie met some of her goals but it was not as dramatic as with PT.  Allie now bears weight on Righty and will use Righty to play if we help get it involved. But, Allie still needs to be more consistent with using Righty on her own. 

Lastly, Allie's cognitive play therapist was there to talk about Allie's development.  She said that Allie is right where she should be for an almost 20-month old and she seems to be picking up on new skills just fine.  I am very proud.  We are getting another speech evaluation soon to make sure that the speech pathologist still thinks that Allie is doing well. 

To celebrate, Allie and I went to the park to play.  There were some other young kids there and Allie was showing off.  She walked over to the stairs and crawled up them by herself.  The picture above was when she got to the top.

At home tonight, she got all the way up our steep stairs with minimal assistance.

It's pretty cool to meet one of her PT goals the same day that we set it.

Friday, October 5, 2012

Brave girl


Allie is getting braver with her walking every day.  The video above shows her most recent physical therapy activity where we put toys on separated surfaces so that she has to transition between them on her own.  We keep moving the ottoman a little farther away from the chair and she hasn't really noticed. 

She also walks around holding just one of my fingers now.  She got up the courage today to let go.  This moment of courage gave way to crippling fear and she dramatically toppled to the ground.  Not a great implementation, but she tried.

Righty is getting adventurous too.  Jonathan was dropping us off at the train today so that Allie and I could go to daycare and then I could go to work.  Allie was strapped to my chest in an Ergo carrier and she kissed Dada, waved to him, and said "Bye bye!"  Jonathan and I looked at each other to see if the other saw it... Allie waved bye-bye with Righty.  She then showed off her Righty waving on the train to a few other strangers too, but they didn't quite appreciate how cool it was.

Tuesday, October 2, 2012

The virtue of being annoying

Fogging up the window
Yesterday, I called every private pediatric occupational therapy service I knew of trying to get Allie in to somewhere soon.

I was told by the Children's Hosipital that the wait was typically 4-5 months, and we had only been in line for a month.  This seemed unacceptable, so I left a voicemail for the therapy manager and emailed the therapist directly to see if we could get in earlier.  I didn't really expect it to work but the one concrete lesson that I've taken from arranging Allie's medical care is this: be as annoying and persistent as possible whenever possible.

I got a call from the OT scheduler this morning and Allie will be resuming weekly OT on Oct 16.  The strange thing is that the scheduler offered me 5 different times to choose from.  It frustrates me that there are kids waiting for therapy and weekly slots left unfilled.  Well, now there is one less open slot being wasted.

Today is a rainy and cold day and Allie discovered that her breath on the window makes the window fog up.  She was so impressed.  Check out how she was using Righty to balance while exploring dew points.

Monday, October 1, 2012

Substitute OT

Pre-therapy Grump

Some days, Allie simply is not a morning person.  Today was one of those days.

To make up for two of the occupational therapy sessions that Allie's regular (soon-to-be ex-) OT missed, the program has tapped a contractor OT to pick up the slack.  This contractor OT was amazing!  So amazing, in fact, that Allie the grump (shown above) went from being super frustrated at life to being a happy right hand user in the span of 5 minutes.

During the session, the OT had Allie bear her weight completely on Righty, put shapes into a fancy shape sorter with her right hand, and hold onto a wand with both hands to pull/push it.  Allie was having so much fun that she had forgotten what a terrible mood she was in before.

Allie's great mood continued as we walked to the train.  She was strapped in front of me in an Ergo carrier and she kissed me over and over again the whole walk.  When we got on the train, she waved at everyone she saw, introduced herself---"Allie!"---and blew kisses at the responsive people. And then we got to daycare and her teacher said: "Wow, Allie, why are you so happy this morning?"  I can tell you that I didn't expect that outcome when I took the picture above.

It was so great working with an OT who had nice things to say about Allie.  She said that Allie's tone in her right arm seems really good, she was supportive of constraint therapy and said that she could see why it would work so well for Allie, and she was horrified that our soon-to-be ex-OT would dare to say that Allie wasn't going to get any better because she could see a lot of potential in their short session.  This great session reinforced how crappy our soon-to-be-ex is. 

Since we will only have the contractor OT for un-made-up make-up sessions, I got her information to see if we could arrange regular private sessions.  Of course our insurance doesn't cover her company.  I then spent a large portion of the rest of the day trying to find easy to get to private OT for Allie and was largely unsuccessful.  We got put on the waitlist at the Children's Hospital over a month ago and I was told today that a 4-5 month wait is typical.  That is an awfully long time to a 19 month old.  I plan to resume my annoyingness and call everyday in hopes of getting in sooner.

In a previous post (make that two posts), I whined about the new in-network pediatric neurologist and how horrible it was going to be switching.  Well, I saw the first real advantage today.  The neurologist re-entered the referral for the Benik splint and it was approved.  Allie gets fitted next week.

Tuesday, September 25, 2012

New OT

Another apple picking picture

We have been having some scheduling problems with Allie's occupational therapist (OT) lately.  In the span of two months, she went on vacation for two weeks without offering to make up the missed sessions, went to our old apartment once instead of our new house and blamed us for not telling her (even though I'm sure that I did), and had a colleague call one morning and abruptly cancel for her and say that she wouldn't be able to make the session up.  And then we were out of town for a week in MN.

So, instead of getting OT every week, she had 3 sessions in the span of two months.  She also wasn't very good at responding to calls or emails and there was often several days between my call or email and her response.  I was annoyed and called the office to see what we could do about switching OTs.  The manager that I spoke with assured me that the scheduling/communication issues could be resolved and the OT agreed to make up the session that she abruptly cancelled and we will have a substitute OT to make up two of the others.

On top of our scheduling problems with her, she has always had a downer attitude about Allie.  Every time Allie would get frustrated and cry, the OT would say "Oh, typical Allie... (sigh)".  I'm sorry but Allie is not a whiny kid, especially given all that we put her through.  

Jonathan had the unfortunate duty of meeting with the OT for the first time after my call to complain.  He said that she seemed annoyed and started making dismissive comments about what Allie would ultimately be capable of doing with her right hand.  We chalked this up to hurt feelings and hoped that it would be better.

I had the next session with the OT today and things were just as tense.  We spent the whole session working with Allie's left hand.  Then, the OT said to me that she doesn't think Allie will ever be able to do much more with her right hand than she does right now.  I understand wanting to lower expectations and we know that we are being incredibly optimistic that her hand will be moderately functional, but we don't expect it to be perfect.  We just want to make sure that we push Allie now while her brain is plastic so that she can ultimately have more function later, even if it isn't perfect.

The OT also said that she doesn't think that constraint therapy resulted in any functional improvement for Allie even though the "medical evaluation," as she put it, showed notable gains.  She said that it doesn't matter if Allie can move her arm so many more degrees or whatever if she doesn't use it.  I understand her point that we want Allie to use the skills that she has gained more often, but I think the point is that she now HAS the skills.  She is a little kid and of course she doesn't understand that this more difficult arm is useful because most of the things she currently does can be done with one good hand.  But I think that if we keep these skills possible for her, she is going to figure out how and when to use them.  It is like what we noticed when she started cruising: Righty became very useful and---lo and behold---she uses it to stabilize herself and transition between furniture.  She also uses her right arm to hold herself up while she plays with a toy on the ground with her left hand.

I said these things to the OT and she said that those things were all fine but Allie still only uses Righty when she "has to."  My ineloquent response: "Well, yeah, duh!"  Of course Allie is going to favor her left hand!  That doesn't mean that we shouldn't still work on the right.  As she and I were talking, Allie scooted over to her mini pink piano, pulled herself up on it, and started banging on it with both hands.  Then she grabbed onto the side of the piano with her right hand to stabilize herself while she more delicately pushed the keys with her left.  I pointed this out to the OT and she said "Yeah, Allie will use her right hand but only if she has to.  You really have to contrive a situation for her to use it."  How was this at all contrived?  To me, it seemed like a perfect example of Allie using skills that we have worked hard to cultivate through therapy.  I told her that I thought she was being incredibly dismissive of what Allie will ultimately be capable of doing and that I didn't think that was at all constructive.

There was then a long, probably two minute, silence that she broke by asking if we would like to switch OTs.  I said yes.

It will probably take a couple weeks to find a replacement and we will continue seeing this OT during the transition, but good riddance!  We are looking forward to the change.  Hopefully we get someone who can see all the potential that we see and will be as proud of her accomplishments, no matter how small.  

Sunday, September 23, 2012

Fall Kick-Off

Allie had a very active first weekend of Fall.

On Saturday, we all went for a long walk and Allie got to practice walking with one hand held.  She got a full block without a single wipe out.



On Sunday, we went to a local orchard to pick apples and pumpkins.  Jonathan and I were much more into it than she was at first.


 Allie warmed up to the idea as soon as she got to pick some apples.


After we picked more apples than we can eat, we went to go play in the kids' hay and tire yard.



You can tell that she is loving the hay because even Righty had to have a handful of it.

We then went to the farm where Allie saw several goats...


... and a cow.  The cow mooed at her and she mooed right back.


 Then we went to pick out a pumpkin.


Allie had to inspect all of them before she could decide.


All in all, the weekend was a great success.

Thursday, September 20, 2012

Ophthalmology

Happy, even after a full eye exam
Allie had a busy day of physical therapy and an ophthalmology appointment.  We have noticed that sometimes Allie's eyes look a little turned inward.  We don't see it often but since it is common for the eye muscles on the affected side of hemi-kids to be weaker than the other side, we thought we would get it checked out.

Allie had a neuro-ophthalmology evaluation back in January when she was hospitalized for ACTH and the ophthalmologist said that her optic nerves are a little more fair in color than what he would expect, but this could be due to her fair skin color and is not necessarily a sign of something wrong.  He said that we would be able to assess Allie's eye health more accurately as she got older, but things looked fine for now.  Her epileptologist noted that Allie didn't seem to see things in her right peripheral vision but said that the hand waving test that she was doing was not terribly accurate and, again, we will have to wait until she is older to know more.

Given this previous input, we know that there is a chance that Allie's vision could be impaired in some way but know that until Allie can answer our questions, there is not a lot that can be determined.

The ophthalmologist today basically reaffirmed our two previous concerns: her optic nerves are more fair than normal and she doesn't seem to have great right peripheral vision.  Regarding the optic nerve, the ophthalmologist said that if she saw a kid without Allie's history with her nerve color, she would send the kid for an MRI.  She said that it is totally possible for optic nerves to be damaged looking but not notably impact vision quality.  Regarding the peripheral vision issues, she suspects that Allie has a right visual field cut impacting the right side of both of her eyes.  But, again... we have to wait and see.

The ophthalmologist also noted that Allie is farsighted, which is typical for kids her age, but because of her potential nerve issues we have to monitor her vision development more closely than we otherwise would.

Lastly, and the reason we went the doctor, her eye misalignment: everything looks fine.  She said that Allie may be straining to see close-up objects because of her farsightedness, which may make her look cross-eyed, but she did not see any inherent weakness.  Good news!

So that is her vision update, but let me tell you how great Allie was during this entire appointment.  When the nurse first came in to make sure all of Allie's background was accurate, she said that she was surprised to read such an extensive medical background for such a young girl.  After going through Allie's medications and while Allie was dragging me around the exam room so that she could explore everything, the nurse said "I'm so happy to see that the stroke did not impact her."  Excuse me?  I pointed out that her right side is a bit weak, and the nurse examined further and said "Yeah, OK.  I see that now but I never would have noticed it otherwise."  Pretty cool.  Then the doctor came in and did her pre-dilation exam and said "Well, I don't see any weakness."  I said "Great!  So, her eye looks good?"  The doctor clarified: "Well, yeah, but I meant all of her.  I don't see any weakness anywhere."  Seriously?  Maybe Allie was on a post-PT high.

The doctor then put the dilation drops in Allie's eyes and sent us out to the waiting room.  Here was her waiting room time in photos:

O...M...G... I love these things!
A friend!  Why is he looking at me like that?
He's stealing the toy!
And then yelling at me!
 
Luckily, Allie and her friend made up and bonded over some goldfish crackers.  He would dig them out of Allie's container and then gently feed them to her.  She liked it.