Maria Rose

We decided not to go to New Mexico this year since Maria’s grandparents went to San Antonio to see Ida’s oldest daughter, and our cousins were all doing their own thing, and because it’s been a long 6 months and another trip would be too much… I cooked an (expensive) organic turkey the way my mom used to do it — 350 degrees for an hour and then 23 or so more hours at 185 degrees. I used another recipe also, which called for slathering the inside and out with sage butter and filling the cavity with a lemon, carrot, celery stick, onion, and a bay leaf. Easy and delicious. Even though I melted the meat thermometer (wasn’t supposed to be left in the oven), it still turned out good! Pumpkin cheesecake was delicious (used the pumpkin that Maria got on a school field trip) and so was the cranberry sauce. I’d forgotten how easy it is to make and so delicious…nothing like the canned kind! Uncle Andy came over and we had a small, intimate dinner.

A couple weeks prior, Maria’s grandpa and Grandma Ida come over from Albuquerque for a quick visit. As usual, Maria got really sick that weekend that they came. I don’t know if she gets extra excited or what, but it seems like she often gets sick when they’re here. They must think she’s always sick! I drove back to ABQ with them because I had to be in Taos for a class. The moment I stepped into their place, I saw that Manolis left a message (unusual), it was a desperate plea for me to call home because Maria is sick and needs a doctor. I never heard my phone ring, even though it was in my pocket most of the trip. He finally (thank goodness) called Sue and she came over and gave Maria a breathing treatment. She said Maria had a blue tinge to her nail beds–it was pretty serious. I don’t know what happened, see seemed ok when I left. I think her sickness/wellness is highly dependent on her mental state. She didn’t want me to leave this time, and I guess this is he way of manifesting it. In the meantime, I was getting something in my head, I think I had allergies that turned into a sinus infection, so I felt like crap, and it was cold, and I was away from home.

Other than that, I had a good trip. Rode the Railrunner (train from ABQ to SF) for the 1st time, then rode with my friends to Taos where it snowed all evening and night. It was beautiful, but I wasn’t really in the mood since I was worried about Maria and felt like crap.

We have an appt to see an endocronologist to try and stop or slow Maria’s precocious puberty. Just another damn thing to worry about.

Her Gtube button has been doing ok, then all of a sudden, it started granulating, which means the skin around the hole started growing, so we went back to the surgeon and he burned it off with silver nitrate, so it looked really bad for several days because the skin around it was black. It’s ok now. I sure do love it (the button) for giving her medicine–you can even do it when she’s asleep! And it’s good for giving her just a bit more nutrition overnight.

We took Maria to Debbie for her Shin Jin Jyutsu treatment and, like before, a couple days later, Maria’s lungs were clear. We’ve been giving her breathing treatments like crazy for a couple weeks and one session with Debbie and she’s clear again. It’s amazing and I wouldn’t believe it if it didn’t happen to Maria. Now that Maria’s feeling better, I’m having my surgery in 10 days or so (uterus removal). I’m getting ok with it, but still quite nervous. Rosanne (my sis) is coming over before and a bit after to help out. I’m grateful because as good as my husband is, he’s not so good with that kind of stuff…

We took Maria to the zoo for the 1st time ever. It was pretty cool, lots of walking, beautiful weather, rode the train. Not a whole lot for Maria. The animals were either too far away or not moving, so she couldn’t really see them. She seemed to have a good time anyway.

The reality of the g-tube is a little different than the theory. It sticks out a lot more than I expected. It’s obviously sore so we have to be careful until it fully heals, which will take weeks. I’ve given her medicine through it twice. It’s not hard but there are a lot of little steps you have to remember to keep things clean. She’s been good, with me at least, about not pulling at the tubing.

She’s not eating or drinking great, but we didn’t really expect much of a change. Now that she gets most of her nutrition through the tub we can focus on feeding techniques and making meals fun again rather than worrying about volume. She apparently gained a pound in her first week with the g-tube, so it’s certainly doing its job.

Last week we saw the orthopedic surgeon. He’s really happy with how Maria’s hip and broken leg healed so he gave us the go ahead to get back to normal activities as she can tolerate them. As soon as we got home, I started working with her on standing. It took 10-15 minutes for her to figure out what I was trying to get her to do and then, with a lot of support from me, she stood up. She had an enormous smile on her face. I had her hold the stand for a few seconds and then sit. We did it twice more and then three times after supper. I don’t want to exhaust her, but every time she was a grinnin’ fool.

The next time I came by, I took her out on the bike. It’s been months since she’s been on it so I figured I’d be lucky to get her to pedal at all, but I wanted her to get familiar with it again. We got about three houses along the sidewalk, and I felt the bike pull away as she started to pedal! She’d do spurts of 1-2 revolutions, and then let me push for a while, and then peddle a little and so on. It was great.

There’s still a lot of work ahead, but I think she’s ready to get moving.