The Daughter Chronicles

Saturday, December 31, 2011

The Christmas weekend was busy

Yes, it surely was. On Friday 23 December, we loaded the kids in the van and headed northward toward Flagstaff and then westward toward Williams, where we would get on the Polar Express. Yes, every year the Grand Canyon Railroad has a Christmas train based on the book, and this year Krys made reservations for it (she had to make them in January; the train fills up fast). So this year, we were off!

We were hoping the weather wasn't that bad, and it wasn't. Sure, it was in the mid-30s during the day, colder than we've been used to for the past decade, but there were no clouds in the sky and the sun was ever-present. The drive north and south was somewhat annoying, mainly because going anywhere with Mia tend to be annoying - she's constantly saying she wants to watch TV, and if we happen to be playing a DVD she wants to see, she switches over to saying she wants to go home - but it's always nice to head to the northern part of the state, where the landscape actually looks interesting rather than blasted by God.

The train ride was fun, I guess. We had a buffet dinner beforehand, and then took the 5.30 ride north. You ride about 20-30 minutes to the "North Pole," a collection of wooden façades with lights strung across them, and then you head back, but this time Santa comes on board the train and hands out presents - sleigh bells, keeping with the book. We also sang carols as we headed back. Going north was nice because the sun hadn't completely set yet, so in the west the horizon was orange while the rest of the sky was black. It was pretty neat.

We had only one hotel room, so sleeping arrangements were fun. Mia and Norah usually sleep in the same bad fairly well, but Mia kept bothering Norah and Norah was a bit wound up from the ride anyway, so eventually we left Mia alone to fall asleep and went down the hall to the pub to relax. Norah enjoyed being out and about with Mommy and Daddy late at night, I can tell you. In the morning, we had a breakfast buffet, and then we were off!

Christmas was the usual affair - presents, cats and dogs acting weird, Mia latching onto one particular present and never giving it up - and we had a good time. Norah got some nice gifts - a Barbie beach house, Harry Potter Legos, a "Monster High" doll (she got Frankie Stein), the board game Operation - while Mia got a new "computer" - a Leap Frog one - and a combination guitar/piano. She LOVES the computer. As usual, we got some new DVDs that she doesn't want to watch because she hasn't memorized them yet, and she doesn't realize she needs to watch them 40-50 times before she memorizes them. Oh well - she'll get around to it. Krys and I got each other presents, but not many - we've been married too many years to worry about getting presents for each other for Christmas. My one present to her was a food processor, which she really wanted, so I guess I did okay.

Anyway, below we have some photographs and videos of the train ride and Christmas. I was going to film some of the train ride, but I never got around to it - I was holding Mia for the ride back, so I really didn't have a chance, and Krys tends to forget about it if no one reminds her. The videos for Christmas are a bit long; I can't imagine they'd be of interest to anyone, but I'd feel bad if I didn't post them!

Anyway, 2011 wasn't the greatest year for Mia, but we're hoping 2012 will be better. In January, especially, we already have some things lined up that we hope will help her a lot. But that's news for later! I hope everyone had a nice Christmas and New Year and whatever else they choose to celebrate this time of the year!

Tuesday, December 20, 2011

Norah's winter concert went well

If you don't believe me, watch it yourself!

Norah's concert was last Wednesday, and we had a nice time. She got dressed up all fancy,

which she enjoys, and we were off! Mia, of course, is never happy about doing anything that doesn't involve watching television, but Krys told her she could sit on Mommy's lap, which made her happy:

Norah, of course, is always ready to smile when she's getting her picture taken, even if she hasn't quite figured out how to make it look natural:

The kids always seem to have a good time. The kindergarten sings by itself, and then the 1st and 2nd grades sing together, the 3rd and 4th together, and then the 5th and 6th grades together. They all did a good job, even though, of course, you really can't say they sounded great, mainly because of their youth. One girl in 6th grade had a solo, and she sounded like a future American Idol (not only was her voice good, but she had that vibrato in her voice that's all the rage among singers these days), but in general, it's more a nice time than a chance to hear good singing. Of course, as always, I was most disappointed with the audience. You can hear it a little on that video - the buzz in the auditorium during the singing. That wasn't only kids - far too many adults were talking while the kids were singing. Don't even get me started on the rudeness of adults these days.

Norah enjoys singing - I don't know if she'll do it when it's not mandatory, but for now, she likes it. And that's all that matters, really!

Friday, December 09, 2011

Mia enjoys her television

For a while, we had no DVD player - we had one from the late 1990s, and it finally died. So while we were waiting for my father-in-law to send us our Christmas present - a Blu-Ray player - Mia had to watch DVDs on my computer. One day she was having a grand old time singing along, and I thought I'd film her. It's been a while since I filmed her having fun.

She's singing along to the Wiggles, by the way. I know the sound quality isn't great and Mia tends to not annunciate terribly well, but toward the end you can understand her telling Jeff to "wake up" - Jeff, of course, is the narcoleptic Wiggle whom no one ever seems to think needs a CT scan or something to see what's wrong with him. Poor Jeff!

Anyway, Mia: Still cute. Of course you knew that!

Sunday, December 04, 2011

Mia visits the doctors!

This past week, Mia visited two of her doctors. One thing you never think about when your child doesn't visit a lot of different kinds of doctors is how frustrating it is listening to different doctors recommend different things. But that's what we got this week!

First, on Monday we went to see her physiatrist. She liked the progress Mia has been making now that she's taking baclofen - her elbow is looser and her leg stretches a bit more than it was. She told us that Mia could easily be on twice the dosage of the drug - she was on 30 mg a day, which the doctor said she usually prescribes to 5-year-olds. So we're slowly moving her dosage up to 45 mg a day, which, we hope, will be even more efficacious. The biggest problem with this is that baclofen tends to make you constipated, and Mia doesn't need any help in that regard. She has a laxative (polyethylene glycol), but if we give her the full dosage, it won't work for a week or ten days and then we have two or three days of messy bowel movements. So we give it to her sparingly, when she's having some issues with constipation. The doctor told us to cut the dosage in half so that we could give it to her all the time, and she also told us giving her a suppository every night will help, and I quote "train her sphincter." (There are phrases you never thought you would ever hear, and this is one of them.) The sphincter is a muscle, after all, and you can apparently exercise it so that it's not as tight. Who knew? I told her that was groovy, and off we went!

So then on Wednesday I went to see Mia's gastroenterologist. This was a follow-up to our visit in August, but by now, I'm kind of stressed out about feeding Mia and Krys and I have decided that it's probably best to put a g-tube in her. I think many of her problems stem from a lack of energy due to her low weight, and as we've been dealing with this pretty much since she was able to feed herself and more specifically for three years since her hip surgery, we're kind of sick of it. Her physiatrist told us that she has seen many kids with brain injuries or spinal cord injuries in the same situation as Mia - they simply don't recognize when they're hungry or thirsty, and they eat just to taste things. Once they get bored with the taste, they're done, whether their bodies need the food or not. Mia weighs only 46/47 pounds (she had climbed up to 49 about a month ago, but then she backslid) and she's 51 inches long, so her BMI isn't great. We're pretty much tired of it.

I told the gastroenterologist this, and she said okay - she's going to e-mail the surgeon who would perform the surgery and see when she can get going on Mia. Then she told me that giving her a suppository every night is probably not a good idea because it's habit-forming. Sigh. She also didn't think it was a good idea to halve her dosage of the laxative, because she's very keen on the prescribed dosage being used. She wanted us to give her a full dosage but give her half the drink in the morning and half at night. The problem is that Mia won't drink half of the drink in the morning - she doesn't have time and she simply won't do it because she doesn't want to. So I decided to follow her advice and not give her a suppository every night, but I also halved the dosage and will give Mia that in 8 fluid ounces every time she gets it from me. Frustrating? Why would you think that?

So that's where we stand right now. I'm kind of hoping she doesn't get the g-tube in until after Christmas, because we're going north on the 23rd to ride the Polar Express and we're staying overnight, and dealing with her g-tube would be annoying. I doubt if it will be that quick, anyway. Performing the surgery over the Christmas break would be ideal, but again, I have a feeling that's too soon. We'll see.

I'll write more about a feeding tube as it gets closer to the time when we're going to have it put in. Opinions are mixed among Mia's therapists and doctors about the need for it. I know, it's shocking. God forbid they agree on something!