Leaps & Bounds In An Almost Body Cast

It seems odd to even the most medically experienced, but that's our Jordan, keeping the medical world on its toes.

In this case it was major, elective surgery for her hip dysplasia. Normally Jordan doesn't "bounce back" from things at all, including her adnoidectomy & t-tube placement in February, but this time she's like a new kid. Perhaps now that her hip is back in place it isn't painful, and none of us realized just how much the pain of her hip dysplasia was affecting her. Perhaps she is "soothed" by the surround-pressure of the cast. Perhaps she's just feeling better since she seems to be virtually free from mucus & secretions (we've barely used the sucko at all the last 6 days!)

Whatever it is, she seems happy, relaxed, and is trying to do more things. She's alert & tracking more and more with her eyes. She's "playing" with her red balloon -- as soon as you put it in her hand she watches it and moves her arm up and down to make it dance around. She's even trying to lift her hand to her mouth to suck on it, and with a little help, she can get it in her mouth & doesn't gag or bite herself. She's chewing up bananas in mesh bags like a maniac, and using her own hands to push the bag into her mouth when she needs to. In general she's doing great things, and even her OT & ST today could notice improvements all around. She's even screaming and crying to tell us when she's unhappy -- and although no one likes to hear their kiddo scream & cry, I can certainly appreciate how she's telling us things.

If I'd have know how much of a positive difference elective hip surgery could make I would have suggested it earlier!

All loaded up in her very own Kid Kart, ready to leave Shriners hospital for good -- or at least for 6 weeks until her cast (hopefully) comes off. Not too bad in the spica cast car seat for the ride home. She didn't even wake up, despite me wacking another car's side mirror while I was trying to get her in (yes, she's much like a board to tote around, her her feet do crash into things now since they don't flop out of the way). At home playing with her balloon (we were using the black board to help make the balloon stand out a little more)Spring is here -- sort of. The daffodils are all over the place, and the cherry trees are in blossom, then we get a day or two of rain. . . .
Today was nice enough to get a little time outside, and a little sun on Jordan's faceMeanwhile, Avery & I were busy making our first birdhouse of the season (we always seem to make a few each spring). She was very serious about it!

Bumlookers!

Jordan was very agitated this evening, and the only thing we could think to do differently was to get her on her tummy! The nurses weren't exactly sure we should do it, but once we got her padded up and turned over it was clear she was dying for some tummy time.

The good news: She settled right down with a banana, and was asleep within ~15 minutes.

The bad news: Her cast is already wet with pee on the bottom side. Bleck. 3 days down, ~39 to go. . . . It's going to be a long ~6 weeks with that stinky thing. So, we're letting it airdry for awhile.
Avery brought Jordan a balloon today, and Jordan "played" with it for about 2 hours, until the nurses got irritated with it bonking them in the head whenever they came to take care of her. Now it's tied to her IV pole.
In anticipation of release tomorrow, I started getting the KidKart cleaned up and ready to try out with the spica cast tomorrow. I don't know if it'll work, but if not at least it's clean again. It was amazing some of the places I found Jordan barf once I started pulling layers off. Avery & I left Devon here for the afternoon, & took the cloth parts to nana Noma's to run through the washer.

Saturday On The Hill

We were busy today, but after 3 straight days at the hospitals, I was starting to go a little stir crazy. Luckily I had a creative outlet, some visitors, and a great dinner out.

This morning Jordan got her cast finished up (no more sharp edges), then she got both of her IV lines out, a set of labs drawn, her urine cath out, and her epidural out. Once she was "unwired" from most things she was free to roam about the halls. Hmmmmm, this would be interesting. I stared, mouth agape, as the wheelchair rental place showed me how Jordan was going to get around in the "fancy" reclining wheelchair they brought for her. There are so many not-so-Jordan-friendly features on this I didn't even know where to start. But, how about with the handles, that are at my knees and facing downwards when the chair is reclined. I guess we're going to have to call another vender on Monday to see if we can get something that might actually work for her. . . .

Getting her caths out and her cast fixed up

Nurses Tammy & Shuziy0

The unlikely wheelchair. It worked okay down the hall & back, but it's not going to make the grade for the next 6 weeks.

Owwwww. The wheel is rubbing on my hand! We love the tram, and we get to watch it go up & down all day & half the night. Avery is dying to go on it again, and take Devon with her, but he hasn't shown much interest. Devon & Avery came for the afternoon. Avery & I went off to do some arts & crafts with the other kids, while Devon & Jordan had some quality (sleep) time. With Easter only 6 days after St. Patrick's day it was time to get going on the Easter decorations!Avery was thrilled to get to "play" with some big girls (Kendra & Kailee) who were there visiting their brother. He's a terror in his wheelchair, up & down the hall. Kendra & Kailee enjoyed getting to be "in charge" of Avery during crafts. Meanwhile, Sammy's mom & I were seriously into making the Easter sign & some paper chains. . . . This was my arts & crafts project, and it was fun! Avery, Devon, & I took off for some dinner at Widmer Gasthaus (yum!). I'm not sure what Avery was thinking with her shoes, but if you look closely you'll see that she is actually wearing 2 pairs of crocs, her smaller red ones inside her new, bigger purple ones. She also had her Japan t-shirt on directly over her USA flag tank top. Can you tell she dressed herself today? Rainbow colors: No more latex bandaids, so now they're rainbow colored flexible fabric -- too coolEven cooler -- rainbow cartoon Coban. So far Jordan's had blue with cars, orange with happy faces, and green with dinosaurs. With the red cast and the rainbow bandaids, it's like an art supply store in our room.

Note: My sister Jessie has a cast on her wrist right now (broken from snowboarding) that can get wet! She can shower, and within ~15 minutes its dry, inside and out. HOW COME Jordan didn't get that!?!?!?! I can't even imagine what this red thing is going to be like after six weeks -- no baths, and all those diapers. . . . Bleck!

A Visit From Avery

We got out of the PICU today. It really was a bit unnecessary, but oh well. We hardly even saw our nurse, she had another patient that really needed her, so I was on my own to stop alarms & sucko through the night. Oh well. So much for that great night of sleep I was planning. I guess I should know by now that the hospital is no luxury hotel. . . .

Now that we're back in the Shriners Hospital Avery was allowed to come visit. Finally -- she got to see the cast. She thought it was pretty cool, but that it should have been blue instead of red. I told her I picked red so it would match most of Jordan's clothes. It just seemed like the "Jordan color."

Jordan is doing so well I can hardly believe it. She's telling us when she's in pain, uncomfortable, or just needs attention (although we have to figure out which one), and luckily it's not that often. She's rarely getting suctioned (less than at home, even), and she's back to full-strength feeds at her regular rate. I even had to whip out the VitaMix this morning & make her some more. Pork, green beans, cherries, cranberry juice, soy yogurt & the other usual items. Unlike in other parts of the country, no one here in Portland bats an eye that she doesn't get formula, just because she has a tube. Everyone thinks its great, as do I, or I wouldn't drag that blender around with me every time we're away from home for more than a day.

If all goes well tonight she'll be weaned off her epidural tomorrow, rest here on Sunday to make sure things are okay & she's not in too much pain, then home on Monday. We've even got her new wheelchair & car seat in the room ready to be put into action. I'm very interested in seeing how she will do in a "regular" wheelchair, now that she has the cast holding her in place -- no more Miss Noodle for awhile!

Our PICU room, even had a bench-bed for me!

Pork smoothie!
Out of "jail" [the crib] and back to bananas -- they're almost like a pacifier to her these days, and it's pretty clear to us when she's asking for one
Avery gets to check out the cast
Then they got to watch a Scooby Doo DVD together

Slimy, Bony, Spikey Things

[Yes, I have lots of time on my hands here at Shriners, and a slow but usable wireless connection. . . .]

So, a couple of weeks ago Avery & I went to OMSI again to see Dinosaurs: China's Ancient Giants. It was pretty neat, but, as expected, it paled in comparison to Walking With Dinosaurs. However, something strange happened -- Avery was scared of the dinos! They were gigantic, and once she saw the 5 robotic dinosaurs, she wouldn't go near them. So, we spent most of the time in the science area, looking at the real animals. My favorite was taking pics of the salmon in the tank that was adjusting from seawater to freshwater. While Avery played in the "stream" I got to fiddle with some of the different settings on my camera & enjoy the cool shots. I rarely get a chance to do controlled "experiments" while learning on my semi-new camera. I'm trying to use my wide-angle lens a bit more, too.