Maria Rose

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.

Maria had her surgery last Friday. The doctor went in to remove the hardware from the VDRO surgery a year and a half ago. It was an outpatient procedure that went fine other than one little incident. Cathy figured that as long as Maria was under anesthesia it would be a good time to swap out her g-tube. The hospital couldn’t find a surgeon to do it so they asked if Cathy or Manolis wanted to. It’s simple to do and they’ve both done it before at home. The only reason the hospital wanted a general surgeon to do it is liability. Anyhow, there was a miscommunication and Manolis went in early…when Maria was still all opened up on the operating table. Not exactly how you want to see your daughter.

Other than that little hiccup there were no problems. They asked Cathy if she wanted the hardware and she said yes. She figures maybe her artist friend, Monica, can do something creative with it. I was expecting a couple of little screws but it’s these two HUGE hunks of metal that look like they should be part of the frame of a skyscraper.

Maria’s resting uncomfortably now. She’s slept almost nonstop since then. She’s not eating much but that’s what the g-tube is for. She’s obviously in pain–wouldn’t you be?–but we are keeping her pretty drugged up for now. It’s supposedly a week’s recovery but we’re skeptical. After all the original surgery was supposed to be an 8-week recovery and it was more like 8 months.

One more thing to worry about: the doctor said two kids recently have gotten broken legs after this procedure because they were pushed too hard during recovery. Since we’ve already done that once with Maria we are going to be extra careful with her this time, even if it means really spoiling her.

We had a quiet day–just like we like it! Maria helped me make a pumpkin pie today, that was fun! She liked playing in the dough and pumpkin pie filling and especially messing with the slimy seeds from the pumpkin and squashes! She also loves to wash her hands.

It was a non-eventful Christmas for us–we did the usual opening gifts; texted/talked with friends and family; ate turkey, etc; watched westerns; and Manolis went to church. Most exciting thing was Maria helping in the kitchen. My cough is still annoying…I think I either need to eat more chocolate or drink more tequila.

Maria was jumping a lot today–not in a good way. It was like startled jerking. It seems to me like she’s in more pain. I’ve been giving her Tylenol most evenings.

Maria is off for 2 weeks for Christmas–winter break, if you want to be P.C. about it. She’s been home from school the past couple days with a cold. They sent her home 2 days in a row, so I decided to keep her home since i want her healthy for her surgery. I got a wicked sore throat a couple days ago, stayed in bed all day and slept, felt a lot better, overdid it, and now it’s back with a vengeance and a side of coughing, which is hell on a sore throat.

We are starting to interview new respite people. Uncle Andy has been doing it since Maria was tiny, but she’s starting to develop a bit and I think it’s better to have a female take over. I want to be respectful of her feelings,potentially, and just think how I would feel if my uncle was changing me…

Did I mention I have a sore throat?

Maria’s been on a growth spurt. She’s eating like crazy and getting taller. She’s up to 49 pounds and when she hits 50 we’re going to stop feeding her until she learns to walk (KIDDING!).

She’s scheduled for surgery later this month to remove the hardware from her hip surgery a year and a half ago. We are hoping that will help her pain issues because she clearly still has pain. Unfortunately since we can’t ask her what’s wrong we aren’t sure what hurts and why. However her OT says she’s known several kids who have had their pain go away when they get the hardware out. It’s supposed to be a fairly quick outpatient procedure. Her doctor doesn’t want to admit her since hospitals are full of those damn sick people so she’s much more likely to get an infection.

Other than that, not much going on as you can tell from the infrequent updates. On this blog, no news is good news.

We went to Las Vegas for Thanksgiving because Maria’s grandparents were in Texas at Ida’s daughter’s house and Auntie Rose had company (and I’ve subject Manolis to enough family for the year…). We stayed at the El Cortez downtown. It was roomy and had a fridge, but no microwave. We tried to stay at the boutique hotel across the street (same owners), but those rooms were smaller, so they re-booked us in one of the tower rooms. Thursday and Friday nights we wandered around downtown at the Fremont Experience, which was pretty cool, but not enough on the overhead video screen to warrant staying downtown. Next time, it will be back to the Strip. And we want to find our wedding chapel to take a photo.

We ate at a couple of buffets, wandered around a bit, and went to see The Life of Pi in 3D — good movie, better book (of course). The best thing was we went to the movie theater inside the Texas Casino and there were only 2 other people in there besides us! We drove around for 2 hours (literally) trying to find a restaurant, but all the locations I found on Yelp were either closed or out of business, so back to the casinos we went. Manolis won $100 the 1st night and didn’t play anymore. Smart!

But the best thing we found out (and are thankful for), is at the Main Street Casino Seafood Buffet on Friday night, we discovered that Maria loves crab. She was eating the beans and mashed potatoes and seafood soup I was feeding her just fine, but then Manolis gave her a bite of snow crab and she liked it, so I gave her more. She kept grabbing my arm and she started kicking her feet, like she was so excited. It was the cutest thing ever! So my spoiled daughter’s daddy said we have to buy her crab once a week.

It was the 1st time I’d been on the bypass road. Although the road was busy (esp coming into Henderson) going back on Saturday, the bypass probably saved us at least an hour getting across the Colorado River. The old road was jam packed

Maria lost a friend this week. Last week actually, but we just found out about it this week. He was a sweet, special 13-year old boy who was fascinated by Maria. They played soccer together on Sundays. Many days he just stood or sat and stared at her–but in a sweet way, not a creepy way. I don’t know if he was verbal, but somehow they had a connection. He had a seizure and died. Not sure of more details than that. We went to his funeral yesterday and oh, my, that was rough, on so many levels… Thank goodness Jill, one of the soccer coaches was there. She helped me through it. Manolis and I think Maria knew what was going on. She seemed sad. I am very sad that we didn’t get to know him better. I was just beginning to try and make a connection with him. I thought we had plenty of time.

Last weekend, Maria’s grandpa turned 80 and we had a little party for him. His oldest brother, Uncle George, was there with his girlfriend or significant other or whatever the kids are calling it these days. His other 2 living brothers weren’t able to make it. Cousins Theresa and Craig (Uncle Craig’s) and Mary Ann and Mike (Uncle George’s) were there. Mary Ann’s daughter, Michelle was there with her brand new baby, John Paul. Maria’s parents and Uncle Andy and Auntie Rose were there with her Uncle Paul and cousin Amelia. Ida’s son and daughter-in-law (David and Karen) were there to represent Dad’s step children. And various spouses or signficant others were there, too, to round things out.

We ate at Dad’s favorite place, Papa Felipe’s. Nice food, huge chocolate cake, scattered margaritas, and lots of visiting (although not enough time over the weekend to fully visit with everyone). Most of us stayed at the Homewood Suites, which was very nice. All-in-all, a good break from everyday nonsense. As usual, Maria enjoyed sleeping with her mom and dad, so she was up most of the 3 nights playing and frolicking about. Super fun.

We found Maria’s new favorite thing to do. A couple weeks ago (yes, I’m a slow blogger…), Manolis and I took Maria to the Cardinals-Dolphins game (pro football). It’s a beautiful, bright, new stadium. We had lovely seats–mid field, nice views, accessible seating, so it’s kind of like our own suite–a fenced off area with 8 seats in it. The guy sitting next to us was super nice, Maria sure liked him. She quite enjoyed the bars of the fence in front of us, it’s like the bars on her bed. She stood a lot, hung over the bars, watched the game, and ate popcorn that the guy next to us bought for her. Amazingly, she didn’t choke even once on the popcorn!

That’s all fantastic in itself, but what amazed me the most, is at the end of the game, it got really exciting and the crowd went wild, and Maria got so excited! The louder the crowd got, the bigger her smile. I’ve never seen such a thing! Then the game went into overtime and it was just crazy until the Cardinals won (woo hoo!). This game was more than 3 hours, we got there about 90 minutes early, and she was still just totally into it. It was just the coolest thing. I wish we could afford to go to more games, but holy moly the NFL = big bucks!!

If only I could figure out how Maria could meet some of the Cardinals–she would love them (and they would love her!) She seems to love big black dudes, maybe she thinks they’re a big chocolate bar. Anyway, I had no idea she’d like this so much.

There’s a pro hockey team here too, also only 20-30 minutes from our house, so maybe we’ll go to a hockey game. I’ve heard they’re fun…so long as you don’t get hit by a puck.

And so, now the Cardinals have taken over the Wiggles (and Cirque de Soleil) as Maria’s favorite live event to attend!!

We went to Tucson for the weekend to hit a couple farmers’ markets and buy freshly roasted Hatch chiles. I’m sure we could have found some in Phoenix, but where is the fun in that?

On the way home we stopped to feed the ostrich(es), deer, donkeys, goats, ducks, and lorikeets. It was big fun, especially the lorikeets, because they’re beautifully colored and docile and climb all over you to eat. When we were at the donkeys, one of them bit Maria’s finger, which happens to be about the same size as the food pellets. She let out a yell and reacted more than I have ever heard her. I think it really hurt, and surprised her. It broke the skin. We cleaned it up and put neosporin on it, so hopefully it won’t get infected.

Nice place, but you really have to watch the kiddos because holy moly those animals are hungry!!