Update on Lucy's JIA

Yesterday, Lucy had a follow-up appointment at Primary Children's regarding her JIA. 

She loved the toys in the waiting room. 

What she didn't love was the poking, the prodding, and the stretching that the doctors did to her. 

It has been determined that Lucy's JIA is not getting any better with the treatment she is on and we must move to the next step. 

So, on November 5th, Lucy will be put under complete anesthesia and given injections into both her knees and her left ankle (oh yeah, it's spread to her ankle now). 

 

I had thought that Lucy was getting better.  She was walking a little bit more than she had before we started treatment.  But, once the doctors watched her walk, they told me she must be in a lot of pain. 

 

They say that this treatment will really help her and she should be pain-free for 6-12 months  (or maybe longer!).  Which would make her even happier (a happier Lucy?!  Not possible!) 

We just really hope and pray that it works!

In happier news, we were blessed with a new great-niece and a great-nephew this past week.  Congratulations to Ashley and Rusty on Baby Claire and to Chris and Kelli on Baby Tyler!

Lucy The Limper

"Your daughter has Juvenile Idiopathic Arthritis." 

 

What?!

 

Juvenile Idiopathic Arthritis. 

 

Juvenile = child.

 

Idiopathic = unknown.

 

Arthritis = the reason my beautiful 16-month-old, who literally ran before she started walking, can't walk anymore. 

 

Lucy has been limping around for about 6 weeks now, so, after being seen by doctors, x-rayed (fun), and poked and prodded with needles (more fun), they have determined that she has Juvenile Idiopathic Arthritis (JIA).  (Don't look it up on Wikipedia, it will only scare the beejeeus out of you.)  We originally thought it was just her right knee, but it turns out, it's both.  And we have to keep a close eye on her, as it could still spread to her other joints.  But we caught it early, so the probability of it causing permanent joint damage is minimal. 

 

So, besides the fact that my beautiful little girl will always have this condition (although symptoms after treatment may recede and become dormant until she reaches puberty (we're really hoping and praying for that)), she will have to have eye exams every 3 months for the rest of her life, because JIA can cause eye swelling and blindness. 

 

Turns out this is a pretty rare disease.  Only 80-90 children in 100,000 are diagnosed with JIA. 

 

We've started her on prescriptions to manage the pain and swelling, so hopefully, we can resolve her problems with those, otherwise more drastic measures will have to be taken. 

 

With treatment, the doctors have assured me that she can still lead a normal life, it's just a matter of finding what treatments work for her. 

 

So . . . even though this is not an ideal situation, it could be much worse.  (The words "cancer" and "leukemia" were thrown around at first.  And the word "heart-attack" could have been applied to me.) 

 

Through all this Lucy is still our smiling, happy girl. 

Lucy has learned to smile for the camera:

Lucy's First Trip to the Zoo

Lucy's first trip to the zoo. 

Ta da!

My friend was kind enough to have a birthday party at the zoo a few weeks ago, so we went. 

 Lucy experienced her first ice cream cone:

 Duh, she loved it.

Who wouldn't love ice cream on a hot summer day (I feel sorry for the lactose intolerant, especially when it's 100 degrees out)?

Looking back over these photos, you'll notice there are no animals in any of them, and, let's be honest, that means they could have been taken from anywhere.  Guess you'll just have to trust me that we really did go to the zoo. 

For Dads Everywhere:

“Spread the diaper in the position of the diamond with you at bat.  Then fold second base down to home and set the baby on the pitcher's mound.  Put first base and third together, bring up home plate and pin the three together.  Of course, in case of rain, you gotta call the game and start all over again.”

~ Jimmy Piersal, on how to diaper a baby, 1968

Memorial Day 2012

For Memorial Day, Mike made me go to the Cabin. 

Where it snowed:

We saw bison:

And this van that made Mike laugh:

(It's from the California University of Pennsylvania.) 

Lucy ate twizzlers:

 And saw a waterfall:

We watched a lot of movies (mostly horrible - even for my tastes (thanks, Justin)).  And played a rousing game of "Spoons" and "Jenga." 

Oh, and Lucy threw up.  (We should probably keep that little fact from Patty & Mike.  Oops.)

But she's fine now.