Thursday, March 29, 2012

A Week in Photos

Saturday, March 24

Allie's teacher, Debie, came to visit and brought Allie a birthday present. Allie was so happy to see her! Debie walked in and Allie started frantically waving and grinning.

Sunday, March 25

Figuring out how to open the cabinet door. Grandma Bets taught her this.

Chowing down on sugar snap peas.

Monday, March 26

Playing on the playground for the first time since her ACTH quarantine. She promptly licked the pole, making us happy that we had kept her off the playground until now.

Butt scooting to look through her picture album. She was flipping through the pictures, pointing out people, and smiling.

Tuesday, March 27

Playing with chocolate syrup in a cake pan.

Looking like a mermaid during therapy. Both of her legs are in one pant leg to make her sit in a different position. She often avoids putting her right butt cheek firmly on the ground but she couldn't avoid it in this pose! She is also wearing her blue Joe Cool splint that helps keep her thumb from tucking in.

Thursday, March 29

Allie practicing her stand-ups/sit-downs. This was towards the end of her workout. Look at how much she just wants to sit down! At the beginning of her workout, she was standing up and then shaking her little butt to the music.

Thursday, March 22, 2012

Uncle Blake Visits!

Allie got to visit with Uncle Blake tonight. They were two peas in a pod. She ate all her dinner in an effort to impress him and she wouldn't fall asleep until he left. It was very cute.

Allie spent her morning practicing her piano...

... then we went the grocery store and she was very happy that she got to hold the bread...

... then she had some fun playing with her toy. It's all in a day's work for Allie.

Tuesday, March 20, 2012

Don't forget about Lefty!

Allie had a developmental evaluation through the Children's Hospital a few weeks back. We will be doing this relatively often to make sure Allie keeps progressing as we hope she will. In this past evaluation, she scored above average cognitively, age appropriately for speech, but delayed physically. Jonathan and I were thrilled about cognitive and speech and not too surprised about the physical.

The developmental psychologist noted that Allie is not doing as much with her left side as we would hope. For example, Allie was given a peg that she had to lift up to get out of its holder. Allie didn't quite get that she had to lift up and instead she tried to wiggle it back and forth to get it out. The psychologist explained that this lack of hand-eye coordination isn't surprising because Allie is not able to explore the world as a typically developing kid would be able to.

We have been spending so much time trying to catch Righty up that we hadn't been paying much attention to her left side. We bought her this monstrosity of a toy with lots of parts that move up and down (see above). Allie had no idea what to do with this at first, but she is starting to get it. Today, she figured out how to slide the beads along the wires to make them move.

Other than that, she spent the morning rolling around with her favorite book Minnesota ABC. Between the Dewey Decimal System shirt and her love affair with this book, she sure does seem like a little book worm.

Saturday, March 17, 2012

Hiking with Allie

Today was a beautiful spring day and decided to celebrate with Allie's first hike. It was about 3 miles round trip with a beautiful waterfall in the middle.

After the hike, we all went out to lunch and ate pizza in the sunshine. It was a very good day.

Thursday, March 15, 2012

Grandma Bets Visits!

Grandma Bets came to visit and Allie was so happy to see her! Allie even raised both her arms in celebration. She was waving Righty all around and chatting it up. She was excited to show Grandma Bets how well she stands (left) and how well she grabs things with both hands (below).

Her right arm movement has really taken off. She was raising both hands above her head, playing with her food with her right hand, and trying to put things into Righty.

Every time she does something new, I think about that first night after her pediatrician said that she suspected that Allie had cerebral palsy. I never thought any of this would be possible. I remember watching scary YouTube videos of CP kids and being totally devastated about this horrible diagnosis. My image of CP has changed dramatically. Before, I thought CP meant that she wouldn't be able to walk, wouldn't be able to have a normal life. With every little bit of progress she makes, I celebrate how far we have come. I know I say this a lot but she is such an amazing girl and we are so lucky to have her.

Allie's BFF Abby's sister Samantha is on spring break from college and is babysitting for us while Jonathan and I try to catch up on all the work that has been piling up since she has been out of daycare. Today was super cute: When I got home from work, Samantha was streaming kids music from her phone and Allie was rocking out. I think Allie really enjoys the company.

She is always adorable and amazing but some days she just melts my heart like I never knew possible. Last night, when I got home from work she was so happy to see me that she just snuggled and cooed on my chest. She was smiling and giggling at me. I loved it.

Tonight, Jonathan and I crept into her room to look at her (like we often do) and she was in a bizarre position. She had taken off her socks and thrown them in different directions, she was on top of Penny the bunny, her blanket was in a big ball, and she was completely asleep. I'm a sucker for her.

Allie has two and a half more weeks until daycare starts again. We cannot wait. I am so excited for her to see her friends and get a normal schedule going. We try our best to be entertaining but nobody can compete with 5 toddlers and a few great teachers.

Sunday, March 11, 2012

One month and counting

"No more pictures!"

Allie has had a GREAT week! She is doing more stuff everyday.

She butt scoots and plays. She even banged two toys together (which is a huge developmental milestone).

She has been seizure free for over a month now, is almost down to her new and lower dose of medication, and super alert and chatty.

Now that we are doing more leg exercise such as standing and squats, her right leg seems to be a little weaker than we had imagined it to be. Hopefully the exercise will be enough to catch is up.

I think Allie is excited to get back to daycare and be around kids again. I saw her playing peek-a-boo with a box of Pampers that had a big picture of a baby on it. Poor girl. Three more weeks until daycare!

Sunday, March 4, 2012

Two Meds Down!

Today was Allie's last ACTH shot. We're done! She also gets to drop the Zantac since the ACTH is gone. This leaves only two medications left.

If she is still seizure free in a week, she gets to lower her dosage of Topamax. It was a good day for Allie and a great day for us.

Thursday, March 1, 2012

Weight Bearing

I remember when the idea of Allie ever really bearing weight through her right arm seemed like a pipe dream. She has been working really hard at it and today she proved my pessimism wrong. As you can see in the photo below, not only is she supporting herself on her arms but she is happy about it.

From this position, she would roll over...

... and then sit up. She still requires assistance with the first 20% of the sitting up but she is getting stronger and more confident every day. Check out that look of concentration as she gets herself through the last phase of sitting up:

In other news, today was the first day that Allie didn't have an ACTH shot. She still has 2 more to go, but we have moved on to the every-other-day phase in the wean down. The ACTH was horrible in many ways but I am so glad that we did it. The last seizure that we saw was 3 weeks ago today.