Thursday, March 28, 2013

No More Cardiology!

Allie had a cardiology appointment to check on her minor heart defect (you can read more about her atrial septal defect here).  I am happy to report that there was no sign of the defect, meaning that the hole closed on its own just like the cardiologist had said that it does in 40% of cases.  We will happily not return to the cardiologist; Allie has been dismissed.

Allie only has four doctors now: her pediatrician, her developmental pediatrician, her neurologist, and her physiatrist.  I cannot tell you how much pleasure it brings me to cross these doctors off our frequently-visited list.

Jonathan brought Allie to her appointment today and took all together amazing care of her for the past two days while I had a work meeting.  They picked me up from the train this evening and we went out to a local pizza place for dinner.  It was the probably the best dinner that Jonathan and I have ever had out with Allie.  She was sweet, charming, and happily ate her pizza and ice cream while watching the other kids in the restaurant.  And, she sits in the booth with us now instead of a high chair.

Waiting for our pizza

We were leaving the restaurant when Jonathan and I looked at each other and said (somewhat surprisedly): "That was fun!"  We normally leave restaurants in a frantic frazzled state with Allie screaming over one of our shoulders.

Today was a great day!

Monday, March 25, 2013

Allie's Gators Returns


Saturday, April 20, 2013 will mark Allie's second National Walk for Epilepsy. 

The money raised from this walk helps the Epilepsy Foundation provide services for people living with epilepsy, provide awareness programs for proper seizure recognition and first aid, provide a voice to make sure health care options for people living with seizures remain strong, and provide much needed research funding toward better treatment options and ultimately cures.

1 in 26 people will develop epilepsy at some point in their lives and the time is NOW to help change this statistic. 

Allie was diagnosed with epilepsy in January 2012, when she was 11 months old. Thanks to modern medication and great doctors, Allie has been seizure free since February 2012. We know that not everyone is as fortunate as Allie in finding a way to effectively treat his/her epilepsy. We also know that Allie's seizures could return at any time. 

Together we can provide the support needed for people living with epilepsy. Please consider joining our team or making a donation to Allie's Gators by clicking here.

Saturday, March 23, 2013

Cheers!

I'm beginning to see glimpses of teenage problems to come.  Allie is already peer pressuring kids to drink with her!

Here is a video that Allie's teacher sent us on Friday.


I suppose that it doesn't help we just taught her how to say "wine"...


Wednesday, March 20, 2013

Sloppy Joe Day


Allie's teacher just sent me these two photos of her trying to eat lunch with Righty.  Judging by the amount of food on her  face, I'm guessing she likes Sloppy Joe Day.

********** UPDATE **********

The following was a note from Allie's teacher:

Righty was the STAR today!  Allie was so proud!  I caught her using Righty to play!  When I gave her a napkin to dry her hands, she reached out with Righty, took it to the trash, and dropped it all with Righty.  At lunch, she attempted to pick up an orange and feed herself.

Tuesday, March 19, 2013

Don't Let the Pigeon Drive the Bus!

Allie really loves the book Don't Let the Pigeon Drive the Bus! The whole point of the story that the kids get to shout "No!" as the pigeon tries to smooth talk his way into driving a bus.

Sweet little Allie sides with the pigeon; she definitely would let him drive the bus.  



Monday, March 18, 2013

Righty Looking Like Lefty



It really is amazing to me how typical Allie seems these days. 

We were on the train this morning, and she was using her right hand almost as much as her left.  She turned around in her chair to say hi to the woman behind her and she put both hands (without prompting) on the top of the chair to pull herself up.  Then she pointed out the window to show the woman a car that was driving by; it took me a moment to notice that Allie was pointing with her right hand.  The woman was kind enough to talk with Allie and Allie blew her a kiss with Righty when we were leaving.  As we were walking out of the train station, she was touching the bumpy concrete wall with Righty as she walked and then pointed to the big escalator that we go up with Righty. 

It made me think: “If I didn’t know that she has issues with her hand, I wouldn’t know right now”. 

Sure, if you look you can see that her right hand isn’t as strong or versatile as her left, but I don’t think it would be the first thing someone notices.  It often takes me a moment to register which hand is which. 

Her constraint OT says that Allie’s leg and slight limp gives away her CP more than her arm does.  The PT thinks that Allie will be limp-free soon if she keeps up all her great progress.      

We play a hand game with the song “Open, Shut Them” (you can check the song out on YouTube here http://youtu.be/RNUZBHlRH4Y ).  The idea is that you open and close your hands in time with the lyrics and then clap.  We’ve been singing this song intermittently to Allie for months.  This past weekend, I sang it and she made the connection that she should open and close Righty too.  There is definitely a delay while she thinks about how to do it, but her right is maybe a half-second behind her left hand.  And when Righty opens for the song, it’s really open---thumb and pointer finger out.  Before this most recent round of constraint, she had very minimal ability to engage her thumb and forefinger. 

And, this is the last bragging note for the day: she crawled all the way down our hallway today, bearing weight on a perfectly open Righty.  She blows me away.

Saturday, March 16, 2013

Victory!

"Yay!!!"

Allie has figured out how to climb onto furniture!

She did it completely on her own this afternoon and with perfect physical therapy form.  We are all very proud (especially her).  We were playing out in the backyard this afternoon and she climbed up on a bench too.

Allie finished up this round of constraint therapy yesterday and it feel like such a weight has been lifted.  Great results; pain to do.  Her OT wants her to do another round in another year, which sounds just fine to us.

Jonathan took her to the last constraint session and part of it was the evaluation to see how far she has come.  Jonathan said that he was totally shocked that Allie did everything that her OT asked her to do and did so without the cast on.  I am excited to get the final write up of how her OT thinks things went.

We're going to take a couple weeks off to recoup from the constraint therapy schedule.  She resumes weekly private OT in 2 weeks and we skipped swim lessons this session.  It feels luxurious.

Tuesday, March 12, 2013

Food Fight


Grandma Bets came to visit today and Allie was being as mischievous as possible.  During dinner, she threw all of her food across the table.  Betsy's poor phone was covered in pasta by the end of the evening and I found a few rogue cheese pieces that made it all the way into the kitchen.

We're still trying to figure out how to discipline this girl.  Two problems: (1) she is too darn cute; (2) she seems to really like time out.  The cuteness thing is something that we just have to get over, even though her cocked head grin melts my heart.  The timeout thing is another struggle.  We've put her in a chair and the corner and she giggles while diligently examining the wall.  We put her in her high chair in the middle of the room and she has a song-less dance party.  I think she knows that we really want her to be unhappy with timeout and I think she's faking her enjoyment because she knows that it takes the seriousness out of it.

In other news, I think I've found out why she has been outrageously grumpy the past week.  Her back molars are popping through.

Monday, March 11, 2013

One... Two... Teeee!

Holy cow, Allie counted to three!

She was obnoxiously standing up on the furniture and wouldn't sit down like we kept telling her to do.  Jonathan said "Allie, I'm going to count to three and if you're not sitting down by then, I'm taking you off the chair. One..." She smiles. "Two..." She giggles.  "Three!" She plops her butt down on the chair and applauds herself.

Jonathan turns to me: "Do you think she knows what that means?  Hey Allie, one..."  She held up her pointer finger and then she said "Twoooo..." holding up two fingers and then "Teeee!" with three fingers up.  She then did it a few more times, applauding each time.

Smarty pants.

Bonnie left on Saturday and Allie was sad to see her go.  Who else is going to watch the 40 minute Old MacDonald video on the iPad with her?  Probably not us...


On Sunday morning, we went to a local park and met with another local family with a 2.5 year old kid with right hemiplegia, like Allie.  He (and the whole family) were great.  Allie was being ridiculously dramatic and we ended up leaving earlier than we would have liked to.  It is so nice to meet other families who have gone through similar things as us.

This is Allie's last week of constraint therapy at KKI and I'm so excited to have it over with! We have seen some absolutely amazing results, but I'm tired and I want our Tuesdays, Thursdays, and Fridays back.  The thing that I notice most from this round is that Allie has started using Righty much more spontaneously.  For example, we were on the train coming home today and she decided to hold on to the pole with Righty in addition to Lefty.  Fine with me!  

Thursday, March 7, 2013

Gama Visits

Jonathan's mom has been visiting for the past week---Allie has had a very fun time with Gama! 

She has had a lot of cuddle time... 


and she got to play in the snow... 




and make cookies...



 During some down time, she got in a few workouts.


And after Allie went to bed, Sam the cat gets some cuddles too.


Bonnie has been an immense help carting Allie back and forth to her constraint therapy in Baltimore and doing the rest of her therapy with her.  It makes me realize what we're missing by not having family around.