Archive for January, 2013

Maria to Kick-off in Semi-Pro Soccer Game

Monday, January 28th, 2013

Don’t know the correct terminology, but the Real (spanish pronunciation) Phoenix Football Club came to the Sunshine League (soccer for special kids) “game” yesterday, and (of course) fell in love with Maria’s cuteness, so they asked her to kick the opening ball at their next home game against Las Vegas. It’s on Sunday night in 2 weeks at 8pm (wow). The guy told us there will be a lot of people there, and I said, “well, that’s good, because Maria loves attention!”. So now, Manolis and I have to practice, because we’re going to hold her up and swing her legs to kick the ball (otherwise, it might take a bit too long….). So exciting! Real Phoenix Semi-Pro Football (Soccer) this season, maybe she’ll move her way up to Cardinals NFL Football next fall!

She got a clean bill of health from her ortho doc. Yesterday at soccer is the first time she stood in more than a month. Yea! Now we can start putting her in her new stander again, and work on getting her a new gait trainer. According to their scale, she weighs 53 pounds now! Holy moly, I gotta start pumping more iron to hoist her around these days.

We also finally got her mounts for her communication device, so we have one set up by her feeding chair at home, and the other one is on her wheelchair for school (thanks Uncle Andy for putting them together!!).

Last week we took Maria to the AZ Science Museum to see the dinosaurs. A couple of them were animated. She was happiest when she was able to touch stuff.

This weekend, we took her to the Monster Jam–you know, those loud-as-crap big trucks that do tricks and roll over cars and flip over. They are SO LOUD!!!! She liked it for the first hour or two, then she fell asleep (with her face on the bars in front of us, of course).

We have to keep Maria well-rounded in her cultural experiences–dinosaurs, Monster Trucks, and semi-pro soccer. woo hoo….

Maria Makes the Honor Roll!

Thursday, January 17th, 2013

Who’d have ever thunk it? Maria made the honor roll for the 2nd quarter of 3rd grade for making all A’s and B’s. It’s funny because I was just looking at her report card and she went down a little bit in a lot of subjects, yet this quarter she made the honor roll and last quarter she didn’t.

Anyway, we haven’t had any other significant incidents with Maria and her body fluids. I did re-do the steri-strips on her left leg (the oozing, more swollen one) and most of the incision was healing nicely, but one bit was still open and weeping. I left an opening so it could soak into the gauze, and yesterday it looked really good! I need to change the strips on her right leg now because they’re still the original ones and they’re soaked in redness….

Maria seems to be feeling better. She’s back in school this week–hasn’t come home early yet! Her eating is so-so. Her sleeping is spotty. She keeps doing the face jammed against the bars thing, yelling periodically (nightmares? pain?), and the other night I forgot to tie the scarf on the bars to close up the gap between the 2 sets of bars and she got her neck stuck in it again. OMG!! I had to wake Manolis up to help me pull her up because she’s getting so heavy, I’m afraid to try and do it myself in case I cut off her airway. Dumb dumb dumb. So glad we got the camera for her room though. It helps to see what she’s doing.

And our cold snap seems to be over. Holy moly it was cold! Below freezing for 4 or 5 nights. I’m afraid to see which of our plants won’t be able to come back, even after all the wrapping, lighting, watering, etc.

Oh, My Oozing Bones!

Wednesday, January 9th, 2013

One thing the ortho doc said we might have to watch out for after this surgery is “oozing bones”. Well I had no idea what the heck that was, nor did I care to inquire further. Right after the surgery, when he said everything went well, he said her bones were dry, so we might not have to worry about the oozing. Then 6 days after the surgery–naturally, on the day of the evening I was invited to the symphony–Maria started bleeding. A lot. She actually bled some on Wednesday, then Thursday while I was at work, her incisions were practically gushing. I’m talking stained blankets, sheets, clothes, a few changes of bandages. Not fun. I still went out and Manolis didn’t seem as freaked as I’d imagined when I finally rolled in at 10pm.

More bleeding Friday. 2 calls to the doc before 9am. After her breakfast, I told Manolis we were loading her into the van to go to the ER because the doc was going to see her regardless, so we may as well get down there rather than waiting for them to tell us when to come. Right before we were ready to get going, the doc’s office called and said it’s perfectly normal. It can do that for a week or two. Call back Monday if she’s still bleeding. ok.

Over the weekend, she was doing better, less pain meds, less valium, less bleeding. The new respite gal came out and Maria slept for most of her Sunday visit, so she helped me sort Maria’s papers. Monday, Maria seemed to be much better. Tuesday, even better. School started Monday, but we weren’t quite ready to send her. We thought Wednesday, for sure. We went to hippotherapy on Tuesday–I thought it’d be a good test to see how she might do in school. The doc said hippotherapy was fine, just no weight-bearing or falling off the horse. So Joe, the physical therapist, looked at her bandages; started moving her around slowly, checking range of motion, etc. He put her on the ball. Everything seemed ok. I was filling out paperwork, they were getting the horse ready, Sue was watching him.

Then he decided to roll Maria over and his arm got stuck under her hip while he was rolling her and all of a sudden there was a huge wet spot on her pants. I touched it and it was a clear, reddish liquid. He told me the name of it and what it was made of, but I was in my happy place, riding on the unicorn, going toward the rainbow, looking at butterflies, and I didn’t hear what he said. He put a bunch of paper towels between the bandage and her pants, they put the horse away, he moved her a little tiny bit more, then when it started leaking a bit more, therapy session was over.

When we got home, I thought it was all good, and before I could change her bandage, she leaked a puddle on our new cuddly blanket Manolis got us for Christmas. so gross. She seemed exhausted, in a bit of pain, and pale by the end of the day, so we gave her valium, pain meds, milk, and rest. And, yeah, no school tomorrow. There’s no way they need to deal with drainage… I was going to put her in her own bed this evening (she’s been sleeping with me since the surgery), but not yet.

So tomorrow, I’m going to take her to school during lunch, so she can see the kids; we’ll go talk to the nurse, try to decide a good timetable, then come home. The other thing about taking her back to school, is I keep hearing there’s a raging stomach flu going around (I’ve heard about it from people here in AZ, and NM, and WA), as well as the regular flu. Yikes! Almost a year ago now is when Maria got her wicked pneumonia and was out of school for a month and in the hospital for 10 days. So, I guess we’ll take it slowly.