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.