Wednesday, November 28, 2012

Neurology and PM&R Appointment

Don't take my post-doctor macaroni!

Allie had her semi-annual joint Neurology and Physical Medicine and Rehabilitation (PM&R) yesterday.  I had an all day work meeting that I couldn't miss so Jonathan and Allie went without me.

The only problem: they were both sick.  We even tried to reschedule but the Children's Hospital appointment person told Jonathan to give her some Tylenol and drag her in.  Otherwise, we wouldn't get another appointment until January.

Here are some key updates:

- Allie will be getting a Supra-Malleolar Orthosis (SMO), which is basically an ankle brace  (shown to the right).  When Allie walks, her right foot turns out a little bit.  I don't know what it is about this brace that makes me totally uncomfortable.  I think it is that I spend so much time focusing on her hand that I want to think that her leg isn't impaired.

- The neurologist is petitioning to our insurance to continue treating Allie.  She was unimpressed with some of the guidance that the new neurologist had given us.

- Following the previous point, our neurologist does not think that Allie has a mirochondrial disorder.  She said that Allie would be having a lot of serious health concerns and Jonathan said that she seemed shocked that someone would suggest such a diagnosis.

- Allie will be getting a maintenance EEG to check for seizure activity in a few months.  This is just a routine check to make sure that Allie isn't having any asymptomatic seizure activity.

- Now that Allie is officially off Topamax, we upped her Trileptal level slightly to adjust for her recent weight gain.

- Still no botox.  The PM&R doctor was impressed with Allie's overall muscle tone and he thinks that Botox would be too much.

It was a good appointment and what I love most of all is that Jonathan did it completely without me.

In other news, we are converging on a start date for Allie's second round of constraint therapy.  We will be going 3 times a week for 8 weeks starting in late February.  She has been doing so much great stuff with her right hand and I am so excited to see what another round of constraint will do.

Thanksgiving


Allie had an amazing Thanksgiving.  We all went to MN to visit Jonathan's family and my dad (Granpa), stepmom (Grandma Bets), sister Hannah, and brother Mikko joined us all out there.

Allie got to meet her new cousin Louie and she loved him.  Aside from her cute kisses in the video above, my favorite Allie and Louie moment was when she leaned over, gently tapped Louie's diaper, looked up at her Auntie Sam and said "Poo poo!"  Her cousins Noah and Elliot kept her busy with lots of fun.

Allie's favorite Thanksgiving foods were sweet potatoes and cranberry sauce.

The day after Thanksgiving, we went to the Holidazzle lights parade though downtown Minneapolis.  I thought Allie would love it.  Turns out, it scared the crap out of her.  Each light-laden float had a sign that preceded it.  As soon as Allie saw a sign marching down the street towards her, she started shouting "no no no NO NO NO NO NOOO! NOOO!"  Once the sign passed, she would shout "bye bye!  Bye bye!"

A highlight of the trip was when we got to meet a young lady in Allie's cousin Erika's college dorm who also had an in utero stroke.  It was so amazing!  If I were to meet this woman on the street, I never ever would have guessed that she had had a stroke.  She said that she has a little less muscle mass on her whole right side (which I couldn't tell) and she can't independently move her fingers (which I also couldn't tell).  It took me several minutes of talking with her to even be able to tell if it was her right or left side that was impaired.  She was gesturing with both arms, opening and closing her hands, and being overall AMAZING.  I have never been so encouraged.

It was a fun trip.  My only complaint is that Allie now wakes up shouting "Papa!" in search of Jonathan's dad.


Thursday, November 15, 2012

"Big!"


Allie was a super star today.  I intentionally didn't tell her physical therapist because I wanted her to see it for herself.  I opened the door for her PT, stepped out of the way so she could see Allie standing there by herself, and watched as Allie walked over to her to say hi.

Allie then showed off by taking 20 independent steps before losing her balance, which is the most that I have seen.

Later in the night, after I filmed the video above, Allie and I cuddled up to watch it.  She got the biggest kick out of watching herself and she would laugh hysterically at the end where she tumbles into me.  She kept shouting "More! More!" We watched the video at least a dozen times, laughing just as hard every time.

Tuesday, November 13, 2012

We have a walker!


Allie has figured out how to walk!  She still wipes out occasionally but she figured out her balance and, if she goes slowly, she can walk.  We are so happy.

I picked her up from daycare last night and her teacher said that she had something to show me.  She said, "Hey Allie, let's go wash our hands."  At that, Allie left the table that she was playing at and walked all by herself over to the sink that is about 10 feet away.

It have never been so proud.

Today, we finally met Allie's new weekly OT and Allie really seemed to like her.  She is young and upbeat, which seems to jive with Allie.  And, she was so impressed at all the stuff Allie could do.  She kept pointing out the good stuff like "Did you see how she uses Righty to grab onto surfaces to pull up?  She's doing a great job using her right arm to counterbalance herself!  I'm amazed that she engages Righty when you ask her to!  I can see why constraint therapy would work so well for her---she has the functionality, she just needs the motivation."  I like the positivity instead of the old jerk OT who always harped on what Allie couldn't do. 

Allie and I spent the rest of the morning playing in the backyard and cleaning up some leaves.  After playing in the leaves for over an hour, she was covered in mud and hungry.  After a quick lunch and an outfit change (she let me change her shirt while she was standing up by herself!), it was off to a nap.  

It has been a good couple days. 


Monday, November 12, 2012

Uphill


Allie is so close to independently walking that I can't believe she's not doing it already.  She can stand all by herself perfectly balanced (she will even lift her hands above her head and show us how big she is while standing) and take intentional steps with long pauses between them.  The only thing she doesn't have is confidence that she can keep it going.  After a couple of perfect steps, she careens into the nearest object like she needs to catch herself. 

Her PT suggested that we hold her wrist while walking instead of letting her clutch onto us.  This is supposed to make her realize that she doesn't need to hold on to walk and it gives us more control of when to let go.  Allie seems to be responding very well to this and will keep walking a few independent steps after we let go (and until she really realizes that we aren't holding on anymore).  You can see Jonathan working on this strategy while he and Allie did some uphill laps yesterday at the park.  When they would get close to me at the top of the hill, Jonathan would let go and Allie would walk right on over. 

We continue to work on Allie's overall strength by making her climb up the stairs at home several times a day, never-ending right leg step ups on a little bench (like step aerobics!), and lots of assisted walking everywhere she goes. 

I'm sure that walking is just going to be like everything else she does.  She will fight it, fight it, fight it, until all the sudden she's running around.  I remember pushing her so hard to sit up on her own and then it just clicked and we couldn't keep her down.  I would bet that this is going to be the same way.

Allie's swim lessons started back up a few weeks ago.  This Saturday, the teacher noticed that Allie wasn't quite moving the way that a typical kid would and she gently inquired into how she could help.  Jonathan said that Allie has cerebral palsy from a stroke, and the older woman said "Nooooo!  I had a stroke a couple of months ago.  I'm going to try to find some extra exercises and props to help her!"  It looks like we have a new addition to Team Allie. 

Thursday, November 8, 2012

Sick Family


Allie's Halloween illness spread to the rest of us and Jonathan and I have been pretty under the weather for the past week.  Allie, however, has been very busy.

She voted.  My dad was shocked that they let Allie vote with an elephant shirt on.  I was shocked that they let a baby vote.


We went straight from voting to pick up her new Benik splint!!!  After several months of waiting for our insurance, we got the stupid $162 dollar splint.  I seriously wish that we had just paid for it out of pocket but this was a good precedent to set with our insurance.  Hassle aside, I really like the Benik.  Allie is much more willing to bear weight on it and wiggle her fingers around.  It is bulky and it won't be great to wear all the time but it seems to be improving her confidence. 


She crawled all the way through the tube with it on.  I had never seen her crawl so far before.



Her balance is getting better too.


And, she really likes drawing.


Here are some other recent photos of Allie.

"I'm a Jack-O-Lantern!"

"But I'm way cuter!"

Inspecting the menu

Eating tomato soup, and not getting much in

Here's to hoping that we all feel better soon!