Thursday, January 22, 2015

Neurology and PM&R appointments



Our health insurance is with an HMO that we picked when we were childless because it was the cheapest insurance option through my work.  We figured we didn't get sick much and neither of us was terribly picky about our primary care doctors, so the cheap insurance would be fine.  

But once we learned about Allie's stroke, I started to worry that our cheap insurance wouldn't provide Allie with the care she needed.  Would we be able to see therapists?  Would we get the doctors she needed?   Much to my surprise, we were simply referred to outside resources for virtually everything.

We have had unlimited private therapy covered, including intensive programs at KKI and less traditional aquatic therapy through another provider.  They covered the nearly $100k month-long ACTH seizure treatment without batting an eye.  While most of the doctors we see are through other organizations, the in-house doctors we see are great.  

When Allie was a baby, the insurance company didn't have a pediatric neurologist on staff so we got to know a great neurologist at Children's.  A couple years later, they got an in-house neurologist and asked that we meet with her.  We weren't crazy about her so they referred us back to our Children's neurologist without a fight.  

A few months ago we were told that another pediatric neurologist had been hired and we were asked to meet with her.  I was annoyed about the hassle but Allie, Jonathan, and I all met with her yesterday and, much to my surprise, we really liked her.  

The doctor kept reiterating to us how lucky we have been; Allie looks so much better than would be expected with her stroke damage and seizure history.  She said "I know this is weird to say, but you really hit the jackpot with her recovery."

Since Allie is almost three years seizure free (!!!!) the doctor brought up potentially reducing or eliminating Allie's twice daily seizure medication Trileptal. We've been lucky that we haven't seen any side effects from the medication but long-term usage can block calcium absorption and put bone health at risk.  It would be a good thing if she can get off the medication safely.  Our approach guided by our Children's neurologist was to hold Allie's dosage constant even though she is growing, effectively lowering her dosage.  The new neurologist said this is a fine approach but suggested we get some more information to help inform our decision.  

She suggested we get an updated hour-long EEG to see if there is seizure activity in Allie's brain.  If so, she should probably stay on the medication.  If not, we may want get a longer EEG to be sure we didn't miss something.  If everything looks stable, we can discuss removing the medication to see how things go. 

The idea of taking Allie off of the medication causes me great anxiety.  She's doing so well.  Why mess with a good thing?  But, that anxiety is mine and Allie shouldn't be forced to medicate forever because it makes me more comfortable.  The doctor also pointed out that Allie is at a great age to try taking her off the medication because she is still heavily supervised.  She won't be swimming on her own or driving if a seizure happened. 

So, Allie will be getting a new EEG in a couple weeks.  Here's to hoping that things look good... 

One other thing that is going well is our ongoing discussion with Allie about her disability.  On the drive to the neurology appointment we were talking with Allie about why we were seeing this new doctor and reviewing some of the terms she'd likely hear.  

We are converging on some age appropriate descriptions of her key medical terms, such as:
  • Stroke: "When you were a baby in Mommy's belly you got an owie on your brain that is kind of like a bruise." 
  • Cerebral Palsy: "Why your Righty and right leg work differently than on your left side."
  • Seizures/Epilepsy: "When someone's body moves when they don't want it to."
We don't get much of a response when we talk to Allie about these things but we don't want her to be in the dark about what we're discussing.  I've had the often embarrassing realization that Allie understands a lot more than we sometimes give her credit for.  She'll chime into a conversation that I didn't think she was listening to or repeat song lyrics from the radio.  I was listening to a radio discussion of board games the other day and all the sudden Allie started talking about what she was hearing and how she likes Candy Land "much better".  

We hope she at least feels included in the conversations with her doctors.

Allie also met with her physical medicine and rehabilitation (PM&R) team last week to discuss her progress.  The doctors were thrilled with how well Allie is doing, especially with her arm and hand.  She really has made huge progress with Righty.  She uses it so much now that I hardly ever have to tell her to.  In fact, she's usually pointing it out to me.  

"Look Mommy!  I'm using two hands!"

We talked about how happy we were with the Botox last year and she's slated to do it again in March, ahead of her next round of constraint therapy at KKI.

At the beginning of the appointment the PM&R fellow was asking me a bunch of questions about what Allie can do: Can she feed herself? Walk up stairs? Put on her shoes? Walk on uneven surfaces? etc.  After a long string of yeses, the doctor stopped me and said "You know this is amazing, right?"

We are very proud of her.


In non-medical news, we went to a children's museum this week to check out the Curious George exhibit.  Curious George is Allie's absolute favorite.  There were lots of exhibits and things to play with but the real Curious George stole the show.  She really wanted to interact with him but was a little intimidated.


Until she came and asked if she could take a picture of him instead of with him.  She took my phone and was no longer nervous being around him.


I love her photography.

Busy Andrew


The past two weeks have been huge for Andrew.  He has learned how to crawl on all fours.  No more army crawling for this guy.

Pardon our dust while we continue to work on our house.
A giant wood board covering a gaping hole in our floor seems like a perfect play spot for a baby... right?
Allie loves the hole that is under the board because she can see into the basement.  She was spying on Jonathan through the hole last night when she declared: "I love this hole!  I want to keep it forever!"
Andrew has also learned to pull himself up.


He even got his name on the honor board of his classroom.  
I think the use of "finally" is a bit dramatic here...
He sprouted another tooth.  This has caused him a lot of anguish, but luckily he loves taking selfies as much as his sister does so that usually cheers him up.


He's eating lots of new food and continuing to adore his big sister.  Even when she's patty-caking his face and trying to get him in trouble for pushing her.


Friday, January 9, 2015

New Physical Therapy Evaluation

Mowing the snow
Allie had a new physical therapy evaluation done last month and we were totally shocked by how much she improved.  

Back in August (when she was 42 months old), she had her initial physical evaluation.  She did the same evaluation last month (at 46 months old).  Check out the score comparisons below! 

Stationary (posture, strength, balance, etc.)
Then: Age equivalent of 33 months (25th percentile)
Now: Age equivalent of 50 months (63rd percentile)

Locomotion (running, jumping, climbing, etc.)
Then: Age equivalent of 33 months (25th percentile)
Now: Age equivalent of 45 months (37th percentile)

There was also an evaluation for "Object Manipulation", including tasks such as throwing and catching.  We didn't get the full results for this but the PT said that she's stayed at about the 25th percentile.  

I've said it before, but I think physical therapy plus gymnastics has been a huge success for her.  She's also more motivated to do two handed things, which helps a lot.  Especially when she gets to eat or throw the end product...


Andrew's 6-month check up


Our little guy is growing up fast!  He had his 6-month check-up yesterday and impressed the pediatrician with his strength and his cute smile.

Here are his stats:
Height: 26.5" long (44th percentile)
Weight: 16lbs 4 oz (25th percentile)

He sprouted his first tooth on New Year's Eve and has been loving the new addition to his diet: baby rice cereal and oatmeal.  And he loves the games of peek-a-boo that come with meal time.


Andrew is also Army crawling all over.  Check out the video of him crawling towards me and listen for Allie desperately trying to get my attention.  She is a little envious of his attention.


Holiday Recap


We were lucky to have my dad (Granpa), stepmom (Grandma Bets), and younger brother (Uncle Mikko) and sister (Auntie Hannah) come visit us for Christmas and we had a blast.  Allie and Andrew got way more gifts than they could comprehend.


We got to go for long walks...


Discover a love for bowling...


 And, practice crawling...


It was a great time!