Tuesday, April 24, 2012


I lost the cord for our camera and haven't been able to post some cute pictures from the past couple weeks.

Playing with Papa in the park.

Lifting keys with Righty!

Rocking on her horse and holding on with both hands.

Marveling in her new found ability to sit herself up in her crib.

Eating the delicious cupcake that Papa got her.

Gama and Allie on the iPad.

Allie had an interesting constraint therapy session today.  Her therapist expressed some concern about Allie's speech development.  She had talked to one of the speech pathologists about the sounds that she had heard Allie making and they both believe that she should be making more sounds than she is right now.

After the session, I immediately called Allie's Special Instructor (SPIN), who manages Allie's cognitive play and speech development and who just cut down Allie's meeting frequency from every other week to once a month because Allie was progressing so well.  The SPIN said that Allie is delayed in terms of the types of sounds that Allie is making but is ahead of the curve in terms of the number of words hat Allie makes.  She suggested that I talk to our service coordinator to schedule a evaluation with a speech pathologist.  We will have our evaluation within the next couple of weeks.

Allie also is getting an evaluation by the speech pathologist that her constraint therapist spoke with.  More therapy for an already busy girl!

The constraint therapists also suggested that we consider a type of therapy called Electrical Stimulation Therapy, or E-Stim for short.  I strongly suggest that you do not Google this, or if you do, include the word "therapy" in your search.  There are some rather risque images that pop up otherwise!

E-Stim works by sending very minor electrical charges through little pads placed on the skin.  The electrical currents stimulate the muscle to tighten and release, which will build muscle over time.  This could help Allie get a little more functionality out of her emerging motions.  Below is a picture of a kid that got E-Stim at the Kennedy Krieger Institute, which is where Allie is doing her constraint therapy.  She will be getting evaluated soon to see if she is a candidate.   

Monday, April 23, 2012

Kisses from Allie

Allie had a great day.  She had an appointment with her cardiologist this morning for an EKG and an Echo.  Everything looks great!  Plus, she was very well behaved during the whole thing.  She was knocking everything around with Righty, grabbing my hair, pushing away the Echo wand, and banging on little portable machine.  She was very impressive.

At the end of the EKG, the nurse asked what Allie's pink band aid on her right arm was.  The band aid that she was referring to was the kineseo tape that her occupational therapist puts on her to help with her wrist motion.  I explained that Allie had a stroke and that she has some difficulty moving her right side.  The nurse was shocked and said "I never would have known that she had any problem with her right side!"  I liked that.

At daycare, she had a fun time finger painting.  You can see her getting ready to paint with her friends below.  I love the little plastic aprons that they are all wearing.

I stopped by daycare to visit after a meeting and I got there just after she woke up from her nap.  She looked so cute rolling around on her cot. 

She also kicked butt during constraint therapy tonight.  Check out how she is crossing midline to bang her hammer on her toy. I cannot believe what amazing progress Allie is making.  Everyday she does a little bit more than the day before and sometimes it is hard to really appreciate the amazing strides she is making.  Sometimes when she thinks that we aren't looking, we catch her reaching for things with Righty even when Lefty is there too.  The little sneak!

Her walking is getting better and better everyday too.  She has been taking mini-assisted steps but tonight she was all about walking.  She even initiated her own steps all the way across our kitchen.  Keep in mind that our kitchen is about the size of a large refrigerator, but we were still as happy as can be.

Sunday, April 22, 2012

Gama and Papa Visit!

Gama and Papa (a.k.a. Bonnie and Tom) came to visit this weekend and Allie had a blast.

They flew into town on Friday afternoon and made it in time to pick Allie up from daycare.  All the kids were playing on the playground and Allie was shocked to see Gama and Papa there.  She started saying "Whoooaaaa!  Whoooaaa!" and making her shocked face.  The photo below is an example of her shocked face (this picture was taken earlier this week before one of her constraint therapy sessions). 

After the initial shock of Gama and Papa wore off, we all went out to dinner.  It was a beautiful night and we got to sit outside in the wind.  Allie LOVES the wind.  She shakes her shabby head of hair in the wind and acts like she's flying.  She got to sample all of our food and throw most of it on the ground.  It was perhaps too windy for the rest of us---Tom and Bonnie's salads were blowing across the table onto my lap---but the food and the company were great and Allie could not have been happier.

Early Saturday morning, we all went to the park and Allie got to show off her swinging and sliding skills.  This, however, was totally exhausting and she got a nice long nap in afterwards.  The rest of Saturday was filled with driving around, looking at cool houses, eating a couple more delicious meals, and hearing all about hats and things that look like hats from Allie.

On Sunday, Allie had her morning physical therapy session, which would have been a great opportunity for Allie to show off all of her new skills.  But, instead, she fussed the whole time.  Her top molars are coming in and it looks like she has two marbles under her gums.  Poor angry baby.  After another long nap, we sat around and watched hockey playoff games on TV.  As you can tell in the picture below, Allie was far more into playing than watching TV.  She kept throwing herself on Gama and Papa and cracking up. 

Can you spot the cat in this picture?  Hint: look for the stink eye.

We were all sad to see Tom and Bonnie leave on Sunday night.  I have many more photos on our real camera but I can't find the cord to connect it to my computer.  Until then, here are some backlogged Allie photos from the past week.

Showing off her teeth.
Practicing slamming the cabinet door, like Grandma Bets taught her.

Perfecting her raspberries while riding a wooden rocking horse technique.  Check out how she is holding on with Righty!

Allie has a repeat EKG and Echo to look at her heart tomorrow.  This is just a check up to make sure that the steroids that she was on didn't do any damage since she has a minor (and very common) heart defect.  She was an absolute doll during her last Echo but we had Papa there to keep her occupied.  This time, it's just me.  I hope that things go well!

Tuesday, April 17, 2012

Allie Sat Up!

We put Allie to bed tonight but, as usual, she had a surprise in store for us. Jonathan walked in to give our grumbling baby her pacifier and shouted "Michelle! Get in here now!" I panicked and bolted into her bedroom only to find our little girl sitting up in her crib smiling at us.

SHE SAT UP! We have been working on her going from laying down to sitting up for months in physical therapy. We are two proud parents!

She was a little confused by our jumping around, clapping, and crying, but she was pretty proud of herself too.

Friday, April 13, 2012

Back to Constraint Therapy

Allie restarted constraint therapy at the Kennedy Kreiger Institute on Thursday and we are already impressed. I am not sure what it is her therapist does there but it totally works. The picture above is of her waiting to go in to her therapy session today.

We started off Thursday's session with the same evaluation that we did on our first day back in January. I was pleasantly surprised to see how much she has improved since then. It is sometimes hard to see how far she has come until we look at where she was just a few months ago. We had the same checklist to go through for homework and we were able to check off so many more things than we could before. She can now support herself with Righty, open her hand to grab objects, hold on to toys, cross mid-line with her right arm, and move her arm straight out in front of her. None of these things were possible four months ago.

She also had a checkup on Thursday afternoon and her doctor was shocked at how much weight Allie has dropped since the ACTH (she is now back to her pre-ACTH weight percentile) and how talkative Allie is, especially since her stroke completely wiped out the area that would have been her speech and language center. Allie now says the following words: cat ("kaaa-dat"), balloon ("baaaooooon"), mama, dada, ball ("baaooo"), this ("dis"), and that ("dat"). She also says "whoa!" when something surprises her. I liked how her pediatrician asked about what words Allie says: "Does she say any words that you can understand?" I was taking the elevator with a little kid the other day and he was chatting with me and his mother was translating.

kid: "Dooo jeew cake gee chairs?"
mom: "Do you take the stairs?"
me: "Yes, sometimes. But today I am taking the elevator."
kid: "Jewer feed urd?"
mom: "Do your feet hurt?"
me: "No. I just felt like doing something different today."
kid: "Eyy gooo do deeefent arrrk ewdaa!"
mom: "I go to a different park today!"
me: "That's great! We are both doing different things!"

I guess your own kid's mumbling makes a lot more sense than the other incoherent kids out there.

Daycare Update

Allie is so happy being back at daycare with her friends. Check out her hanging with two of her friends below (she's on the left).

She is also really enjoys the toy variety. Daycare has way cooler toys than her lame mom and dad buy.

Monday, April 9, 2012

Push Ups

Look at Allie do push ups! Can you believe it?!? She just popped out with this little trick the other day and, needless to say, it shocked us.

We have started having Allie brush her teeth. She loves it. She humms in joy with every stroke---that's my girl!

Sunday, April 8, 2012

Happy Easter!

Allie wants to wish everyone a Happy Easter! We had a really fun day.

The lovely Locke ladies, Abby and Samantha (pictured below), had us over for their family's annual Easter egg hunt. Allie found a couple of eggs and really liked chewing on them. We also got to meet Allie's friends and got a glimpse of her secret social life. I heard about the porch swings that she likes the frequent and hung out with her favorite "big cats" (also known as dogs). It was very cute.

Tuesday, April 3, 2012

Yoga Buddies

Allie had a great day today. She actually ate, which is something that she hasn't been doing a lot of lately. She took a long morning nap and then we went out to lunch with a friend that I met in prenatal yoga and her daughter. If you think about it, it is kind of like Allie and her friend used to do yoga together but now they just hang out at the park.

Jonathan came home early today and the three of us went on a couple mile walk to enjoy the beautiful 70 degree weather. Lots of outdoor time today.

Monday, April 2, 2012

Allie's Back at Daycare

Today, after 2 long months of absence, Allie made her comeback at daycare. It was amazing.

When we first walked into the building, she looked totally puzzled. Everyone was coming up to say hello and she didn't seem to remember them. She kept looking at me with a 'what is going on?' expression. Then, we got to her room with her teachers and friends.

She immediately perked up when she saw everyone. She started yelling "Whoa! Whoa!" and pointing at each kid one by one. Then came the hugs and kisses from her friends (see photos below). She was very happy!

A lot has changed in the past two months. Allie now has a little cot that she sleeps on instead of a crib. She gets all the same foods as the big kids and they have a slide in the room to play on. They play more outdoors and have to clean up after themselves. She's growing up!
She had a great day.

Before daycare this morning, Allie had PT and OT. Allie's play skills have really taken off lately. She now will put her toys into a container and roll a ball back and forth with someone. These are notable developmental milestones. Allie's OT got her to drink with a straw after a couple minutes of practice. She said that it was the quickest that she has ever seen a kid learn how to do it. Allie likes doing it the other way too: blowing air into the straw and making bubbles is much more fun than drinking water. From a PT perspective, Allie can now support herself for a little while in quadruped (the crawling position with her hands and knees on the ground). She also tipped over to the right twice during therapy today and caught herself with her right arm both times. It was very possible that right-sided reflexes like this could have never developed so seeing them starting is very encouraging.

Allie starts constraint therapy again next week and we are looking forward to getting all of that going again. She is more strong willed and opinionated than she was when we quit. It will be interesting to see how everything goes.

National Walk for Epilepsy

This Saturday was the National Walk for Epilepsy. Thank you to everyone who donated or walked. It was a truly touching experience!

Allie's Gators finished the two-mile walk around the National Mall and only Allie fell asleep along the way. Our team mate Eric designed our great shirts (shown close up above).

Allie's Gators raised nearly $2000 for epilepsy education and research. Coming from someone who didn't know what epilepsy really was four months ago, I can tell you that more education and awareness is needed. Thank you all!

Rosemary Visits!

Our dear friend Rosemary came into town from Chicago to visit for the weekend. Allie hasn't seen Rosemary since last summer but the two of them quickly made up for lost time. Allie loved her watch and Rosemary kindly let Allie chew on it. Isn't it weird to imagine meeting someone and being excited to chew on her watch?