Maria Rose

We had a nice, quiet Christmas. It seemed like Maria knew it was Christmas — she didn’t sleep well the night before and she was wild on Christmas day! Just goofy and active and in a good mood. She only opened a few of her presents, then a few more the day after, and she even has 2 more that she hasn’t opened yet. She wasn’t quite as into opening the presents this year as she was for her birthday; maybe because most of them were wrapped, rather than in gift bags. She prefers gift bags.

She went for a bike ride with Uncle Andy just before sunset and saw lots of her friends and schoolmates on the way, which is awesome! The AZ Cardinals played an exciting game Christmas evening, lots of phone calls with friends and family, so all-in-all Christmas was good.

Over the weekend, we took Maria for a little hike. Manolis held her arms around his neck, like she was riding piggy back (except of course, her legs were dangling free). It didn’t look too comfortable, but she seemed to like it! We also found out that Maria likes coffee, coke (she drank about half a can of unthickened Coke at 7pm one night — courtesy of her daddy, duh), and candy canes.

Yesterday was a big day–Maria’s daddy had eye surgery (the whites of one eye was growing into the iris, don’t remember what it’s called) and Maria was P.E. student of the day!!! I don’t know what that means, but it’s very exciting!

Manolis is doing well. His doc said he looked good at his follow-up appt today. He has to take it easy for a week or so, we can’t travel for 2 wks, and I think he looks like he’s in pain or discomfort (tho’ he won’t admit it); but in the scheme of things, he’s doing great and all is well.

Although things have been not super great with Maria (not sleeping well, sticking her fingers down her throat, not eating so great, more tired than usual), she still seems to be doing great in school and they seem to love her and take good care of her. For example, a recent email from her general ed teacher said “P.S. Maria couldn’t be more loved in this room. The kids look forward to her being in here and are bummed when she is not! When she had that rash and they couldn’t touch her, they were going through withdrawal!” She’s in a 1st/2nd grade classroom and the kids line up to read to her. Her teacher even got special permission from the school principal to have 2 extra recesses per week in the afternoons just so the kids could play/interact with Maria with structured games. I think that is such a thoughtful and wonderful thing of her teacher to do. This year is similar to her 2 years in preschool as far as integration and acceptance from the other kids. Kindergarten was ok, but not nearly so welcoming.

This weekend we’re going to the Shriner’s Christmas Party. I hope to get a picture of Maria with Santa. I’m a little apprehensive about going, but feel it’s important, because of Santa and seeing other kids who are similar to Maria, and because I think I’m going to ask them to help us pay for the wheelchair van…..so it’ll be good to remind them who Maria is and how cute she is!

Still no wheelchair. It’s been more than 6 months since our first visit to be fitted for the new chair. It was back-ordered until Nov 24, but when I called this week, they hadn’t gotten it yet. They were supposed to return my call with an update, but it’s been 2-3 days, and I haven’t heard back from them. They were nice people, but very unhelpful. Never any updates, unless asked to by the liaison working with us from Accordant Healthcare (part of Blue Cross). The liaison is a nurse and is AWESOME! She calls me frequently and calls the medical equipment company often to ask them what’s the hold-up. Oh well, I guess it’s just prolonging our van purchase (which is a good thing!)

We went to the Faerie Festival in Estrella Park in Goodyear. The weather wasn’t so great and the festival certainly could have been better, but the face painting was fantastic!

Maria lost her first tooth the week before Thanksgiving; of course it was the first of 3 nights I was away, so I missed it. I keep meaning to put it under her pillow for the tooth fairy, but I think she’s on vacation, so I’ll wait a bit.

Manolis, Maria, and I went to NM for Thanksgiving. Andy stayed home to work (and take care of the kitties). We had a nice time, as usual. Maria really enjoys hanging out with her Grandpa and he with her, although he probably would never admit it. It was good to see Aunt Louise and the cousins; and of course, good food as usual. She tried to stick her fingers down her throat and vomit about 50 times on the way home.

Maria had an appt with the gastroenterologist this week. He’s going to scope her to see if her vomiting, not sleeping, nose rubbing, not eating, etc is from reflux or Sandifer’s Syndrome or food allergies or something with the white hairs in the intestines or a virus. He’s also going to put some capsule down her throat that will register the level of acid going up and down for two days. He thinks it will be before Christmas. I like the doc (much better than her first one…). She lost 2 1/2 pounds since the last time she was weighed. Not so great, but not surprising since she hasn’t been eating or drinking well lately.

It’s been great having Manolis home. Maria’s happier. So are Manolis and I. I’m much more relaxed. We’re all very glad he’s retired now and can stay home to be a house husband.