Thursday, February 28, 2013

Hattt!

Allie has fallen in love with her wolf hat.  She wears it everywhere and protests if we leave home without it---"OOlf!" ("wolf!").

Carrying a cup full of crackers in Righty so that she can eat with Lefty

Carrying the big girl basket at the grocery store

Picking out yogurt

The wolf hat is great for so many occasions, but it just wouldn't be right to feed her baby while wearing it. It might scare the baby!



Sunday, February 24, 2013

Maple Sugar Festival


Allie went to a local Maple Sugar Festival with Connor (who is on the bench) and his big brother Thomas today.  Connor is just over a year old and has right hemiplegia from an in utero stroke, just like Allie (you can check out his blog here).

The festival took place in this huge park that we will definitely be going back to.

Allie got tired and a little grumpy towards the end of the day but it was fun nonetheless.

After a long nap (for both Allie and me), she made us dinner in her kitchen and took a few phone calls while she was cooking.



Thursday, February 21, 2013

Check Up

Allie had her two year well visit today and it was great.  Here are her current stats:

Height: 34.5" (67th percentile)
Weight: 24 lbs 8 oz (20.5th percentile)

How does she still not weigh 25 lbs?

The best part of the appointment was that we got a copy of her developmental pediatrician's report.  Here is my favorite snippet:

"IMPRESSION: The patient was a delightful and engaging 23-month-old toddle with... good cognitive and language development and is doing a number of tasks that are above her chronologic age.  She has a number of skills ranging from 2 to 2-1/2 years of age.  The patient is receiving appropriate early intervention services and is attending a typical daycare because she has such good language and good pretend play skills."

Woot woot!

Last year when Allie was in the height of her seizures, I got in a fight with the pharmacy manager at her pediatrician's office.  This woman was so rude that I ended up leaving in tears and filing a formal complaint against her.  I went to pick up Allie's Trileptal refill today and I had to talk to this woman.  She asked if I remembered her and I tried to just blow it off.  She then proceeded to remind me of our encounter by describing it like this: "Remember, you wanted the non-generic medicine and we wouldn't give it to you.  You went all (*cue arm waving like a wind puppet in front of an electronics store*) as if the world was going to end."  I stared blankly at her and said "My daughter was having seizures and I couldn't get the right medication from her pharmacy for her.  It did feel like the world was ending."  I really dislike her.    

OT, PT, doctor's appointment,  blood work,
and an hour at the pharmacy make for a very sleepy girl

Allie's Birthday Party Update

Allie has had a busy week (and so have we).  I was out of town on Tuesday and Wednesday for work, and on Thursday my mom and Jonathan's parents came into town.  Allie was excited to see all the grandparents and we had a fun Valentine's day together.

The next day, our friend Lisa got into town and finally got to meet Allie in person.  Allie celebrated by opening one of her gifts early.... an amazing kitchen!  

Exploring the new kitchen 

Saturday was Allie's birthday party and we all had so much fun.

Grandma, Lisa, and Papa at Allie's party
She got to do a lot of her favorite things, such as... baby petting...

hat modeling... 
Hat modeling 

giggling with Abby...


blowing out candles...


and opening presents.


After the actual party, Allie and Gama had a cupcake party.  Allie went through 5 of them!

Cheers!  
On Sunday, Allie was sad to see Gama and Papa go.  On Monday, Lisa and Grandma left too and then there were just us three left.  


Busy week for a two year old.

Monday, February 11, 2013

Happy 2nd Birthday!

Our little girl turned two years old today.  It was a great day.

When she woke up this morning, Jonathan and I both ran into her room and started singing the Happy Birthday song to her.  She sat through the whole thing with a slightly groggy and confused look on her face but, as soon as we finished, she smiled and then said "More?"  Another round!  By the end of the song, she was full of smiles and ready to get her day started.

We headed off to daycare and met with her OT.  The only problem was that John Henry The Guitar Playing Man burst into her classroom for a concert.  The OT session was a waste but it was a fun morning.  

We brought cupcakes for her classroom for an afternoon party and the kids were all sugar high by the time that I got there .  I brought a balloon for Allie and there was major balloon envy in the room.  She loved it and she insisted on carrying it home on the entire quarter mile walk home.




We had an Allie dinner of Kraft mac and cheese and applesauce...


... and then we brought out the cupcake.  Allie happily blew out the candle and asked for more.  We lit the candle and sang Happy Birthday at least a half dozen times.  Most of the times, she couldn't contain her excitement and she would blow out the candle right away.



After all the candle excitement, the cupcake was pretty good too.



We had a great night just relaxing with Allie.  It was a world of difference from her birthday last year.

Happy birthday little girl!  We love you!  

Sunday, February 10, 2013

ONE YEAR SEIZURE FREE!

One year ago today, Allie woke up in the morning and didn't have a seizure.  We have been lucky enough to enjoy 365 seizure-free mornings since then.  Watching her grow and flourish over the past year has been the best year of my life.

I remember when we were in the midst of the infantile spasms, we would dread Allie waking up because we knew what we were about to see.  Her spasms always started within a few minutes of her waking up and lasted only a few minutes more.  Those minutes seemed to drag on forever and, before we knew it, she was ready for a nap again and the feeling of dread would set in again.

Her first seizure-free day was particularly special because our families had come into town to celebrate her birthday on the following day.  I remember a few days later when I was driving my mom to the airport, I commented that Allie had been seizure free for 3 days.  She said "that's the best birthday gift you all could ask for."  It was.

Some combination of ACTH, Topamax, and Trileptal stopped her seizures.  Within a month, she was weaned off ACTH.  A few months later, we started the several month wean of Topamax, which had been making her a little groggy and not hungry.  She is now on just Trileptal and we don't see any discernible side effects from it.

To celebrate her anniversary and her upcoming birthday, we did two big girl activities this morning.

We turned her carseat around so that she is now forward facing.  She loves it and it is nice to finally be able to see her in the backseat.



Her first car trip in her forward-facing seat was to the hair salon for her first haircut.  I was not in love with it (and apparently that was very obvious by the look on my face)...



... but it looks OK now that it is dry.  The bangs are still a little uneven, but I imagine it is pretty difficult to cut hair on a tiny bouncing head.  




Happy anniversary and pre-birthday to our little almost 2 year old!  

Friday, February 8, 2013

Constraint Therapy Update

Which one is Righty?  Sometimes, it's hard to tell.

Today marked the end of week three of Allie’s constraint therapy at the Kennedy Krieger Institute in Baltimore.  She has been spending an hour there every Tuesday, Thursday, and Friday morning and mostly enjoying it.  She gets to play with lots of fun toys that are only available when she has the cast on and she seems pretty darn proud of her Righty work. 

Outside of our three hours of formal therapy weekly, we try to do at least an hour of home-based therapy with the cast on every day.  This homework is probably more difficult for Jonathan and me than it is for Allie because (as we have re-learned) it requires a good bit of restructuring of her day to fit it in.  On Tuesdays and Thursdays when I’m home with her, we do at least a half hour of blaring music while we dance around and she pops bubbles with Righty.  Something about the music and the dancing makes her less frustrated with an otherwise monotonous activity. 

We’ve also learned that even if Allie refuses to use Righty to play with a toy, she’s willing to use it to clean up.  She is becoming more and more like Jonathan every day.  For example, if she doesn’t want to stack blocks with Righty, I just dump them out and say “OK.  All done.  Clean up time!” and she’ll happily pick up all the blocks and put them back in the container with Righty.  I even got her to push the box of blocks all the way across the room to put them away.  It’s amazing what she’ll do if she thinks that she’s getting out of therapy. 

Our hopes for this round of the constraint therapy are that Allie will:
·         Gain better ranges of motion with her shoulder and elbow, and
·         Improve her ability to open and close her hand for grasping and dropping. 

So far, we have noticed a big improvement in her shoulder.  She seems to have a nearly full range of motion.

Her elbow is improving too.  The motions seem much more fluid and she able to able to functionally use it when it is positions other than fully extended or at a 90 degree angle.  One of her therapists even noted that she seems much more comfortable with engaging her elbow as needed.

Her grasping is getting better too, but not necessarily in the ways that I would hope.  Her ability to open or close her hand is getting easier for her, but she still has a hard time getting her thumb and pointer finger all the way open.  However, she seems to be getting better at working around them, which is good in its own way.

All this being said, I think the best thing that has come out of the therapy so far is that she is much more willing to engage Righty for daily tasks when not casted.  She volunteers Righty to take off her shoes, blow kisses, point to body parts, etc.

She is doing so much cool Righty stuff that it is sometimes hard to fully appreciate all that she is doing.  I was re-filling out a chart that we created for KKI during our first stint last year where we had to rank Allie’s abilities in key areas on a scale of 1 to 10 (1 being not at all functional and 10 being perfect) and also rank our satisfaction with each area.  It was surprising to see the differences in our responses from last year.  Our ranking of her abilities in several areas dropped from last year in spite of her dramatic gains in those areas.  It took me a moment to put myself in my shoes as of a year ago and remember what I then thought was possible.  At the time, I was hoping that Allie would be able to move her arm in some way to eventually be able to, say, carry a lunch tray at school with both hands or dress herself.  Now, I know these things are completely possible and I’m hoping things like to be able to carry a full water bottle in her Right hand and to tie laced shoes with two hands.  The level of functionality and dexterity that I have come to hope for is significantly higher than what I ever would have thought possible a year ago.

Good for her for teaching me never to underestimate her. 

Thursday, February 7, 2013

Service Dropped!


I am happy to report that Allie will no longer be getting Special Instruction (a.k.a. cognitive play therapy) from our county's early intervention program.  

Allie has been keeping up with all of her developmental milestones for quite a while now.  We're going to miss Miss Hen but we are thrilled about not qualifying for this service any more.  And, we'll get to catch up with Miss Hen every few months to make sure that Allie continues to progress as we hope.   

It feels good to have 2 monthly therapy sessions off our plate. Now we can focus on other things, like cuddling.





Saturday, February 2, 2013

Dancing or Eating?


Allie loves music and I love watching her dance.   It's a match made in Taylor Swift heaven.