The Daughter Chronicles

Friday, July 29, 2005

A day in the life of Norah

Since Norah is a little over five weeks old and is starting to act more like a human, I thought I'd enlighten everyone to how a month-old baby spends her day. If you have children, this might be a little familiar to you ...

Okay, she wakes up about 5 a.m. She's actually sleeping a lot, and not waking up every two hours like babies are supposed to. Go Norah! However, when she does wake up, she wants to eat, and once Krys gets her in her room, she goes to the booby like a Q-Tip at the early bird special at Denny's.¹ So for about an hour, Krys feeds her. Then, just about when Mia is waking up, they go back to bed. Sometimes Krys can get back to sleep, sometimes she can't. Norah sleeps until about 8 or 9, and then it's crying time! It's all about the crying with Norah!

So we wheel her bassinet out of the bedroom and into the living room. Krys feeds her again - she's like a locust! As Krys pointed out, she has decided that lactose intolerance is the way to go, so after the breast, we hit her with the soy! For most of the morning, her routine goes thusly: eat, cry, eat some more, cry, suck on a pacifier, spit out the pacifier because, I don't know, it's not minty fresh, cry, eat some more ... you get the idea. Krys can magically burp her, but she refuses to do so for me. Lousy kid - I told Krys we should have kept the receipt!

So this goes on for a few hours. We're actually pretty impressed with her - she is raising her head quite well, and whenever she's upset in her bassinet she pushes off on her knees and tries to crawl. She'll be zipping around by the end of next week at this rate! We pass her back and forth depending on what we're doing with Mia. Yesterday Krys and Mia went out to the mall and I held Norah for two hours. She drank, she cried, she sucked, she cried, she drank - her repertoire is rather limited.

Then, around noon, it's nap time. Formula, more than breast milk, makes kids sleepy, so we give her that when we want her to go down. We put her in the bassinet on her stomach. Oh no, you can't do that - what about SIDS? Well, that's the chance we have to take, isn't it? Babies sleep better on their bellies. We have also found out that babies who die from SIDS make a lot of noise when they are having problems, so if she is going to die, we'll know. She doesn't sleep through the night on her belly, but we think it's okay for her nap. Yes, we're bad parents!

She looks like a frog when she sleeps - it's quite cute. She sleeps for many hours, and only occasionally gets cranky and makes "I'm pissed off at the world" noises. We wake her up around the same time we get Mia up - between 4.30 and 5 o'clock. Of course, she is quite hungry. It's shocking! So Krys feeds her again. This makes her happy for approximately ten minutes. While I'm holding Mia and feeding her, Krys is hanging out with her on the sofa. After I feed Mia, Krys likes to read to her, so I get Demon Child #2 or she goes in her bassinet, depending on whether or not she's being calm. If she starts getting cranky in the bassinet, we try to give her the pacifier. She's quite funny with the pacifier - it seems to pacify her, but she twists her head around to try to get it out of her mouth. She hasn't figured out that her hands can hold things in her mouth yet, so they're pretty useless. After Krys reads to Mia, the really fun part of the evening begins. We have to get Mia ready for bed, but Norah is unhappy if we ignore her. So we're getting Mia changed and I'm getting her medicine, and Norah is screaming her head off. Krys then has to put her in the carrier that straps onto her chest, and that makes her happy. We used to read to Mia while she was getting her bottle, but that's been more difficult these days because of Norah wanting attention. Finally, Mia's down, and we can concentrate on Norah.

Krys usually feeds her again, and then it's time to try to put her to sleep. We've been trying to get her down before 10 o'clock, because it's never to early to get her on a schedule! Krys swaddles her in a blanket and wraps her up like a burrito, and then it's off to bed! We put her on her side, okay? We don't want CPS to come and take her away! If she's swaddled, she doesn't flail around with her hands and knock her pacifier away, and therefore she sleeps. At 5 o'clock, the routine starts again.

Sounds fun, doesn't it? I think babies cry for the most part because they are bored out of their minds. She's having a groovy time looking around and checking things out, but I think she really wants to explore on her own. She's actually quite a good baby - she only cries when she really wants something, and she sleeps well and doesn't get too freaked out by Mia screeching (Mia is impressed with the volume of her voice, so she screeches a lot). But she has to be bored. Would you like living this way? I didn't think so.

¹ A "Q-Tip" is a derogatory term for the old-timers who visit here in the winter. Also known as: snowbirds.

Monday, July 25, 2005

Go Speed Racer, go!

Short post, because it's late. Today during physical therapy Mia cruised - cruised, I say! - around the house in her gait trainer. She has been walking in it while she watches television - slowly moving forward and eventually banging into the armoire - but that has been the extent of her mobility. Her PT has been making her walk around the house on the tile, but until today, he has had to move the gait trainer himself and force her to take steps. Today, for some reason, everything clicked. We have been waiting for it to click that this contraption will help her get around if she wants it to, and it seems like today it dawned on her. It was an epiphany!¹ She was lifting up her feet and propelling herself along, and she was loving it. It was one of the few PT sessions during which she didn't scream her head off. Now, she wasn't lifting her feet all the way up and putting them squarely down, but she was still moving herself and lifting them off the ground. It was very exciting.

We hope at her next session she'll still understand what she can do in the gait trainer. It would be so nice if she learned how to be ambulatory. It was a swell day.

¹ Like in A Portrait of the Artist as a Young Man! How literary!

Friday, July 22, 2005

One Fish, Two Fish, and Other News...

Some minor news from the Burgas Child front...

After the sad demise of Bullwinkle, one of our two fish, I decided to purchase a new companion for Rocky.

I chose function over fashion & went with a Chinese Algae Eater. He will help keep the tank clean, but the guy at PetCo says he's pretty much at the bottom of the food chain. Rocky seems to like him, though. I've named him 'Ping' after the Chinese food delivery guy on Seinfeld.

Mia has also received, for the van, a handicapped placard--or as a former boss of mine used to refer to it..."A crip sticker"--as in "I have to borrow my Mom's crip sticker so I can get decent parking at the mall when I go Christmas shopping." Keep in mind that this is the same woman who used to turn the hose on the homeless man who slept in the bushes outside the office.

I used it yesterday when I took Mia to the mall. It was nice to have enough room to put the wheelchair right next to the van and transfer her right from the car seat to the wheelchair. Previously, if I was parked next to a truck or SUV (and is there anything else being driven these days?), I only had room to put the wheelchair behind the van and I had to carry Mia back there from the car seat.

As for Norah, she has decided to be lactose intolerant--she has NO toleration for lactose (another Seinfeld reference). I've switched to a lactose-free formula in an effort to control the gassiness (I'm talking room-clearing gas here). It seems to be helping so life is good(and it smells better).

Wednesday, July 20, 2005

Some on-the-cutting-edge pictures of Mia and Norah

My parents left town today. It was very nice to see them. They're always very helpful, not only with the kids, but with, say, painting, which my mom did this weekend. She enjoys it, she says. More power to her.

They own a digital camera, and therefore I can bring you up-to-the-minute photographs of our two girls. My roll of film is almost done, so there should be some more pictures next week or so, but until then, we have the most recent pictures of the two most beautiful girls in the world! Bow down before their beauty!

Here's my dad holding Norah. This is her standard face: "What the crap am I doing here, and how do I get away? And why is it so bright in this here 'world' place? It was nice and dark in that other place. Two thumbs down!"

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Again, Norah looks puzzled. "So, is this it? I mean, I can't really do anything, can I? At least in that other place I was comfortable. I miss breathing liquid. If things don't improve around here soon, I might have to take measures. Drastic measures."

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This isn't the greatest picture of Mia standing, but it gives the idea I was trying to convey - namely, how tall she is. She's huge!

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Here's another picture of Norah, in one of her pretty outfits. Again, note the grumpy expression. Someone will pay for her predicament!

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Finally, a picture of Mia with her hair down. It's always up, since she eats it, so I thought I would take one of it down. In the winter, especially, we would like to keep it down, because it's so nice. In the summer we would have it up anyway. It's been over 115 Fahrenheit here for a week. Charming.

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Enjoy the pictures!

Sunday, July 17, 2005

Mia communicates in her own groovy way

My parents are here this week (they arrived on Wednesday), and although they haven't kept us too busy, it's been tough to sit down and update. Here's a short tidbit:

Mia is still eating poorly. We're seeing about her medicine, which hasn't helped very much, and we've been reading up on the medication she is on. But that's for another day.

When she does eat, we try to encourage her so that she thinks it's cool. I have been telling her that she is a good girl when she eats well, and she finds that fun. This week I said to her, "Who's a good girl?" and she raised her hand and said something that sounded suspiciously like "good girl." It was two syllables and there were two "g" sounds in there, so I choose to believe that's what she was saying. It's very cute. So now I try to ask her who's a good girl when she eats well, and she smiles her big beautiful smile and raises her hand. She likes being a good girl. Too bad she doesn't eat like one all the time, but we're working on that.

Monday, July 11, 2005

More meds for Mia

Unfortunately, this is true. I took her to see her neurologist today (who called us back at 10 pm last Wednesday - he may be slow, but he's dedicated!) and he assigned yet another medication to deal with her seizures. She is starting on Keppra (aka levetiracetam), so we'll see what that does. He wants her to start small and increase the dosage in a few days, then call him next week. The thing that bugs me is this is on top of the other crap she's taking. I want something to replace those, but I'll bug him about that if this doesn't work. As with everything with Mia, I'm not confident. Sad to say, but it's true.

The cool thing is she is much more interested in symmetry these days, as in, she is starting to realize that people have two of certain things. Whenever she points at me cheek and asks, "Dat?" she immediately points at my other cheek. Same thing with ears. So that's neat, because it means she is grabbing her left hand a lot more, and we think she has come to understand that it is a hand and she's not quite sure why it doesn't work like her right hand. Every step is a good one!

Speaking of steps (an unintentional segue, I swear!), she is walking in her gait trainer much better. She's actually lifting her left leg a bit and bringing it forward. Most of the walking takes place on her tiptoes, but it's a start. Her balance is still non-existent, so that still hinders her, but the movement is much better.

Norah is a newborn. I' d like to say more things about her, but anyone who has kids knows what newborns do, and anyone who hasn't - well, I don't want to spoil the surprise. We enjoy her hands - she moves them all about but has no idea what to do with them yet, so occasionally she'll knock her pacifier out of her mouth and have it sort of in her hand, but she freaks out. She's dandy.

One final note - the neurologist was an hour late to his 1 o'clock appointment. The madness continues! Next time I make a doctor's appointment, if they tell me, say, noon, I'm dying to say, "So I'll just show up at one." What would they say? Would they get all snippy? Have we not rights?

Okay, I'll shut up now.

Wednesday, July 06, 2005

Everything we do is wrong

It's been a weird week here at the Burgas homestead. Those of you with children know Norah's routine:

cry cry cry eat eat pee poop cry cry eat eat eat sleep sleep cry cry eat eat pee poop eat eat sleep

You get the idea.

So our focus is on Mia! (As it should be, in her world.) We have been trying to figure out what to do about her lack of appetite, and according to her, everything we do is wrong. We tried not giving her all of her medicine, even though her neurologist would be shocked, shocked! by the notion. This idea came to us after she puked last Wednesday before we fed her dinner. I mentioned that if we did that for too long, her neurologist would say he couldn't change her meds because we hadn't been giving it all to her so we couldn't know the exact effects. So we've been giving her the full meds and getting her to eat something at every meal, which isn't always fun. We also adopted the "Serenity Now!" option of feeding her - we give her some food, and if she eats it, fine, and if she doesn't, whatever. I have even allowed her to throw food on the floor, which drives Krys and, I'm sure, proponents of parental discipline into paroxysms of rage. Her choice of foods has dwindled to:

Gerber fruit stuff - bananas, banana strawberry, applesauce; some cereal (Kix, Tiger Power, Cheerios) - but that has become increasingly difficult to get her to eat; the occasional vegetable; salt and vinegar "chips" that look like French fries - these she loves. We used to buy them at Cost Plus, but they no longer stock them. Today we search for another place to purchase them! Of course, she'll eat pudding and sweet stuff, but those are only a reward for good eating. We haven't caved that far yet.

Her food intake seems to be enough to counter the queasy effects of the medicine, so that's okay. I have started tracking her seizures, something I should have done a long time ago, I know, but better late than never, I guess. We want to have ammunition to take to the doctor's next time we go in. Over the weekend her appetite got even worse, and the food-throwing became worse, and the overall eating experience got worse. She was more like a zombie than ever, and so we decided on Sunday to forgo her usual batch of melatonin, which we have been giving her for months to help her sleep. Well, that too was wrong. She slept for a little over an hour, and then was up for the rest of the afternoon. If we don't give it to her, she doesn't sleep, but if we give it to her, she sleeps for hours and is a zombie when we wake her up. Quite the conundrum.

On Monday we decided to give her half the dose of melatonin that we had been giving, meaning we now give her an eighth of a pill. It's hard cutting it, but it seems to work. We called her neurologist on Tuesday and told the nurse that we didn't see any improvement in her seizure activity and that it had to be possible to switch her medication. She told us that he would call us back, but as I've mentioned before, people suck, so he hasn't yet. I'm sure he will, but I might have to call him to "remind" him.

We also received the latest issue of Exceptional Parent magazine, in which is the first of a three-part series on seizures. Serendipity indeed. It explains about the kinds of seizures that exist and how to diagnose them. I won't bore you with the details, because we're not sure yet what kind of seizures Mia has. We're pretty sure they're tonic seizures, but we'll have to check with her neurologist.

I've mentioned this before, but it's kind of tough being a first-time parent, even though everyone gives you advice. It's a lot of trial and error. Add the brain injury on top of that, and we think raising Norah will be a breeze (yeah, right). So even though everything we do is wrong, we're still doing what we can. Mia will appreciate it some day. She better, is all I can say, or there will be trouble.