Back from Philly and Placerville

Home again home again jiggidy jig!  Let’s not go anywhere for a while, shall we? I have three suitcases with scattered contents  migrating outward across my floor. Each has at least one scavenger cat all over it. My house could be the stage for a disaster movie.

Three weeks ago Laelia and I flew out to Kansas City for the AMC Convention. Well last week it was Daddy’s turn so he and Lali flew out to Philadelphia for a check up and x-ray appointment. (Did I mention that all of our flights were free? Besides one AMC clinic in Seattle, all of our medical travel since Laelia was born has been covered! Woot!) This is the first Philly trip I have not attended. I kept having to tell myself it was just a check up. And it was just a check up. And I did figure out how to micromanage the entire trip long distance. Hehe. But still. Leaving Laelia with her daddy is a terrifying experience for me. Not that he’s not super responsible and smart… he is,  but he’s also a space cadet. Every other phone call went something like this.

Him: “We arrived safely in Philly! Now where are the directions to the Ronald McDonald House?”

Me: “Um, what’s the ONE thing I asked you to print out because we don’t have a printer?”

Him: “Directions.”

Me: “And didn’t I call you to remind you at work to do that before you came home?”

Him: “Yeah, but where are they?”

Or,

Him: “Well we got a ride to the grocery store because, besides other things, Laelia just really wanted some animal crackers and kept asking for them.”

Me: “She went through the entire giant bag of animal crackers I sent you with already?!!”

Him: “Oh this bag marked, ‘Snacks’? Yeah I see it now. Oh this would have been helpful on the plane. Whoa, look at all these animal crackers!”

Add to that the fact that I did all the packing, compiled all the medical questions, safety pinned all of Laelia’s outfits together because  matching colors on little girls’ clothes confuses the poor man… well, *sigh* anyway.

So where was I? I was busy seeing my brand new nephew! So I flew up north to visit family in Placerville. I’m an aunt now! Yay me! And my sister and her husband are first time parents! So yay them too I guess. :)

I didn’t have much time, but I  made myself busy by visiting family, losing money at the  new casino down the road  (that my dad won back because Christina is lucky and I’m not), taking a three hour walk and coming home with my pockets so full of rocks that I couldn’t clean them out in time to answer my buried cell phone, cleaning my sister’s bathrooms and floors, making and eating ham sandwiches, ham with corn, ham with ham, more ham and ham with ham on ham, losing  to my sister  at Doctor Mario… a lot (you haven’t heard my excuses yet!) and playing and cuddling little Levi. Here are some pictures courtesy of my sister since my camera went to camera heaven.

Levi with his favorite aunt: ME!!!!

Teaching Levi to make faces.

And here’s the fish face!

Note the family resemblance?

Here’s Laelia at Levi’s age. Parents should keep their children’s cheeks away from me, apparently.

And while I was busy back home, Laelia was in Philly!

Laelia and Ronald and Ryan

Of course they ran into Laelia’s future husband, Ryan. He practically stalks her, you know. ;) Daddy and Lali actually stayed at the Ronald McDonald House in Camden, New Jersey this time and just commuted to Philly for their appointment. Their room was Harry Potter-themed–from broomsticks on the walls, Harry Potter books on the shelves and posters  or life-size cutouts of the characters everywhere. Each wall was painted a different Hogwarts color with a corresponding banner: Gryffindor, Slytherin, Ravenclaw or Hufflepuff. It was awesome. Actually every room at Camden’s RMDH is themed. The room they almost stayed in was 70s tie-dyed themed. There’s even a  Sponge Bob room!

While in New Jersey, Kiersten and Ryan took them to eat real pizza. Jersey style!

“Now that I’ve had my Jersey pizza, I want my Snooki tan!”

They saw the doctors and therapists on Friday for  Dr. van Bosse’s  AMC clinic. Laelia got her x-rays (lookin’ good!), some extra padding for her shoes and some magic pony toys (that my cats are always trying to swallow and kill themselves with). The physical therapist said to do more tummy time (like a baby?), hydrotherapy (I’ve called them but haven’t heard back yet), hippotherapy (called them and heard back… $25 a session?!!!??!!) and more physical therapy everyday. I’m not sure how we’re going to fit this all in. It’s a lot. A LOT. Let’s just say  I’m going to look for  stay-at-home jobs now.

And we’re adding new hip stretches to the daily routine.  Because we didn’t have enough stretches. Yay.  o_O

Then there’s the stressful paperwork dramas that must now take place. We are suppose to get  KAFOs but we have to get the script from a local doc (Philly docs don’t count in California) and then send that to insurance, and then to the orthopedist, so  it will take months I’m sure. And we’re suppose to start using her Kid Walk, but I can’t figure out what happened between steps 5 and 6 (better known as between the insurance auth step and the manufacturer step).  We also got the go-ahead to do E-Stim, although I have no idea how to find out anything about that… and it’s low on my list.

We also have a surgery date of November 8th. They want us to fly to Philly a week or two before that to do intense, daily out-patient physical therapy. After those weeks of hard work and the concluding surgery we’ll have a better idea of what to try next.

And since lots of people have asked about the surgery, let me back up. Last November Laelia had her bones,  between the hips and femurs,  cut through and rotated and then screwed back together like this:

So these screws or pins or clamps (I’ve heard them referred to as all three) need to come out. Then we’ll have to start over with PT.  Ugh. Well  in a way  she’ll be learning to do everything  she does now only with her actual hardware and not the metal hardware we added.  Osteoporosis is a major concern for AMC’ers, so the more weight we can put through those legs  now, the better. We already have her on a high protein and calcium diet which I think is helping. Or at least it’s SOMETHING. She eats eggs and peanut butter sandwiches and  protein (“chocolate milk”) shakes for her muscles, and she eats yogurt and supplements (gummy vits)  and other things with  calcium in them for her bones.  I know kids who have bones break just from the lack of weight bearing just from the amyoplasia (which she has) so I’m hopeful we’ll  escape that fate.

In other news we started physical therapy with new therapists today (Tuesday). The bad news was that we were (read: I was)  so desperate for a camera that we tried to get one for cheapo off Craigslist and ended up driving to Spring Valley to pick it up. And that’s where our car stayed. Bad alternator. Just great. So we  had to bum a ride to PT and then wait over an hour for a ride home. But  I like our therapists and think we’re doing the right thing.

It’s so weird getting new therapists. Every  year and every new therapist, we get a new evaluation. And my brain knows that these exercises are to test where Laelia is now, and not a test that she’s failing. But still my heart has not  wrapped around the idea that we’re not failing when, you know, we fail. So instead of hearing what the therapist actually says, “Looks like she’s a little weak here, let’s make it a goal this year to work on it!” I hear,  “Well Laelia FAILED the physical test. No A+ for her. BAD PARENTING!” :) Okay not really, but I have to make an effort to change my thought process here. After the tests Laelia looks at me waiting to see my reactions (because she’s hella smart) and I have to mean it when I tell her how good she did. She lights up like the Fourth of July when she hears she’s  done well. A+ for Laelia!

Well we just got back from picking up the dead car in Spring Valley. We now also have a camera we got on the cheap! Don’t know if it works yet. It came without batteries or memory cards or anything. *crosses fingers*

There’s lots more to say but I’m tired. Charley keeps telling me cute Laelia stories from his trip to Philly, but I told him he’d have to blog about it himself. I’m going to eat my weight in food since I have to fast tomorrow (feel sorry for my coworkers) for a blood test.

Ooh left over pasta! Bye!

 

One Response to “Back from Philly and Placerville”

  1. Bethany says:

    Bwahaha… Cracking up about the safety pinned outfits and unnoticed snack bag! Being married to a “space cadet” myself, I can certainly commiserate. FYI, it helps if you lower your husband’s child care expectations to keeping the child alive; everything else is just a bonus. :D

    Let us know if you need anything in preparation for Lali’s next surgery… practical needs or anything to help ease anxiety. Maybe a little 4th birthday package?

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