Sunday, May 26, 2013

Hometown Holidays

Our town has a memorial day festival, quaintly called "Hometown Holidays", which features dozens of  bands and small plates from local restaurants.  We walked to the town square this afternoon and had so much fun.

We got to try some new restaurants...

Perhaps the Indian food was too spicy?
play in the the fountain...

and get our grove on.  Allie particularly liked the bluegrass bands.

It was a fun afternoon.

Getting Lazy

Jonathan and I are slacking.  When Allie was first diagnosed, we were in a mad dash of therapies and doctors appointments.  It seemed like our entire life revolved around Allie's cerebral palsy and epilepsy.  But over the last few months, Allie has seemed just fine.  She uses Righty, she walks around, and she is developing just like her friends at school.  While all this normalcy is obviously fantastic, I've noticed that we seem to be doing less of the things that we are "supposed" to do.  For example, Allie's PT wants her to do 5 laps up the stairs in our house while wearing a leg immobilizer on her left leg every day.  It is important for Allie to strengthen her right leg to even out her walking.  Still, it is a rare day that we get the 5 laps in.  Why?  It's not hard; we just have to do it.  

Another example is Allie's followup Physical Medicine and Rehabilitation appointment.  The PM&R doctor that we saw with her last Neurology appointment wants us to come in to do more of an evaluation to see if we should do Botox.  But now a month has passed and we still haven't called to schedule the appointment.  Why not?

Part of it is that we are busy with other things but I think most of it is that Allie is doing so well and it is really nice not to think about her disability all the time.  In fact, there are days that go by when I don't think about it at all.  I never thought it would be like that; I thought it would dominate every aspect of our life for a very long time.  I used to worry about her ability to do the things that she wants to do and now I feel confident that she will figure out a way to do anything she wants to do.

We had some friends over yesterday and one of their kids is about a year older than Allie.  The friend was walking around our backyard and putting little shiny rocks in a bucket.  Allie wanted to too so she tried to hold the bucket in Righty and pick up the rocks with Lefty.  The bucket kept tipping so she switched hands and carried the bucket with Lefty and picked up the rocks with Righty.  She totally did it.  I didn't have to intervene or help in any way.  She just figured it out.  

As Righty is becoming more integrated into her life, I feel can step back and breath.  I just hope we don't let important things fall through the cracks because we're enjoying our peace.  

Righty helping.  I remember when this would have been a huge deal.  Now, it's just Allie.

Tuesday, May 21, 2013

Home Sweet Home

I got back from Germany on Sunday and I was so happy to see Jonathan and Allie waiting for me at the airport, each with a rose from our garden.  It was a wonderful homecoming.

Allie grew a lot while I was gone and Jonathan did a perfect job taking care of her.

I was missing her so much that I made a compilation of some of my favorite videos of her.  Enjoy!

Saturday, May 11, 2013

Hanging with Papa

Jonathan's dad is visiting this weekend to keep Jonathan and Allie company while I am gone.  Considering that Allie is too busy to talk to me on the phone and I'm receiving photos like the one above, I would say that Papa's visit is very much appreciated.  Like Papa, like granddaughter.  

Thursday, May 9, 2013

Allie in Minnesota

We were all in Minnesota this past weekend to celebrate Allie's cousin Elliot's bar mitzvah.

Allie idolizing Elliot

"Maybe someday I'll be as cool as Elliot... (sigh)"

Hanging with the cousins Elliot, Noah, and Anna

Tormenting cousin Louie with the crazy balloons

Laughing maniacally because she popped balloons  

Posing with cousin Louie

"Righty will steal phone..."

On Tuesday, we had to leave.  Jonathan and Allie went home and I went to LA for work.  I'll be in Germany for the next week (also for work), but Jonathan is taking great care of Allie and I get to look forward to more photos like this.

Thursday, May 2, 2013

Birth Records Update

Ever since Allie was diagnosed, we have been trying to get and look through her birth records to see if there was any indication that she had a stroke.  Well, we are now a year and a half post-diagnosis and her doctors have finally received the records and trudged through all 500 pages of them.

Her neurologist says that a couple things caught her eye but that nothing was obviously "wrong" (her quotes, not mine).  Here are a few of the highlights:
  • Vacuum extractions (Allie had two attempted vacuums to try to get her out):  Her neurologist said that "vacuum extractions increase the risk of complications but there are lots of vacuum extractions that go perfectly well."  From what I've read, vacuum extractions can often lead to brain bleeds, which can cause cerebral palsy.  But, Allie had a clot and not a bleed. 
  • Transverse position  (Allie was a little crooked and they hoped that she would straighten out during labor):  The neurologist thinks that it is "a little curious" that they attempted a vaginal delivery but she's "not sure that she can make that a cause in anyway".
  • Fetal heart rate changes (Allie's heart rate would change during contractions but they had me lay on my side and that seemed to resolve the issue).  The neurologist notes that "fetal heart rate changes can be a sign of distress but what is written here is pretty mild as far as heart rate changes go."
  • True knot in Allie's umbilical cord (Allie's cord was tied in a figure eight true knot, which could have easily killed her on its own by tightening and cutting off oxygen.  Oxygen deprivation can also cause cerebral palsy.  But, Allie's oxygen was not cut off, it was just that one stupid clot):  The neurologist notes that the "true knot in the cord in curious but again I can't make that the cause."
Figure Eight Knot

The neurologist said that there is not "a smoking gun" in the birth records to indicate a cause.  She wishes that Allie's placenta was sent to pathology to see if there was any indication of blood clots or damage, but hospitals usually only do that if something is obviously wrong.

It seems to me like there are potential causes for any other origin of CP (bleed, oxygen deprivation), just not the one she has (clot).

We also sent the full birth records to the OB/GYN that followed us throughout the pregnancy but did not actually deliver Allie.  She said that she doesn't see anything out of the ordinary but that what she has read about cerebral artery infarts (aka, blood clots that block oxygen to the brain) indicates that there aren't much data on risk factors other than clotting disorders (which Allie and I have not tested positive for) and random chance.  She said that she will keep looking into the issue but she can't identify any real risk of it happening again if we decide to have another kid.  She suggests that if I get pregnant again, I take a low-dose aspirin to lower my clotting risk.  

So, a year and a half wait, a couple hundred dollars for the birth records, and a whole lot of hassle ended up telling us very little.  Still, it makes me feel better knowing that we've looked into it and that Allie seemed as healthy to everyone else as she did to us when she was born.

Cue the self-satisfied face for trying...

Playseum Play Date

Maddox and Allie

Allie had a playdate today with her friend Maddox from school and we went to a small local children's museum called the Playseum.  The Playseum is immediately behind our old home (I could see Allie's old room from one of their windows) but we never went before because Allie wasn't walking around yet and it didn't seem like it would be that much fun.

Well, today was a lot of fun.  Allie got to play with some bunnies and a bird.  Allie really liked the bunny below, named Marshmallow.  She kept hugging Marshmallow and saying "Hi Baby!"

There were several different theme rooms where the kids could play but Allie and Maddox seemed to like the grocery store the best.  They each had their own cart and they loaded up on their favorite foods.

Allie was impressed that she could carry two orange juice containers at the same time.

I was most impressed with her ability to put all of the foods away where they belonged.  There were baskets of the different fruits and vegetables and Allie independently put all the produce away in the correct bins.  Miss Hen, our former cognitive play therapist, was always talking about how sorting was a big deal.  Hey Miss Hen, Allie's doing really well!  

The one (kind of hilarious) downer of the day was this little girl below.  I swear she is a mean girl in training.  She was playing at the ice cream stand and Allie wanted to get a scoop too.  Right after this photo, she snatched the ice cream out of Allie's hand and yelled at her.  Doesn't Allie look intimidated? Allie took it like a champ and went and got another scoop.