Archive for February, 2006

Slowly recovering

Thursday, February 23rd, 2006

We are on the mend from our various maladies. Cathy wins the prize, having suffered from not only laryngitis and pinkeye but also a sinus infection and an ear infection. Manolis continues to mock us with his mighty Greek constitution, since he hasn’t gotten even a sniffle. He’s one of those people who just doesn’t get sick, and seems genuinely baffled by those of us who do.

Maria continues to get better at holding the bottle. I let her slide some when she was sick and I suspect Cathy did as well, but she’s still improving. I’m hoping to get her in the crawler today, but she’s taking a very long nap right now.

A few weeks back Cathy got the loan of a resonance board. It’s a wooden platform with a raised lip around it to hold it slightly off the ground so it will carry vibration. We are supposed to lay Maria on it and she can feel the sound of vibrating toys or when we bang on it. I keep forgetting it’s there so I haven’t tried her with it, but I saw the PT use it once. It seems interesting, but it’s another case of “one more thing for the long list of daily activities”.

Warning: Biohazard Area

Monday, February 20th, 2006

Everybody’s sick. Not just this cold that keeps getting passed around, but the nanny has pinkeye and Cathy (who currently has severe laryngitis) thinks she may have gotten it.

Rosanne has been here over the weekend. We all went to the Greek festival on Saturday, which was fun. Other than that, we’ve mostly been fighting off infections.

Yup, she’s sick

Thursday, February 16th, 2006

It looks like just a cold this time rather than a relapse into pneumonia, but she’s sick again. The past few days she’s had a persistant fever that doesn’t respond to Tylenol, though she’s been fine today. Cathy took her to the pediatrician yesterday and he thinks she’s fine. Of course, Maria wasn’t acting as sick in his office as she does at home, the little scamp. The nanny, though very worried, agrees that it’s just a cold and since she’s a retired LPN, sees Maria all the time, and loves her like she was her own, we’re inclined to think she’s right.

But Maria’s clearly unhappy. She’s doing the “cough until she throws up” thing which isn’t pleasant for anyone, especially her. She’s not eating or drinking well; we’re more concerned with the fluids than the food at this point. She’s finally asleep right now, though she keeps waking up about every five minutes coughing. She’s missing her second-to-last visit with the speech therapist before she retires and that’s a pity.

I’m sure she’ll be fine in a few days. It’s just so tough with all she’s been through to just watch her suffer knowing there isn’t much we can do to help her. She’s just got to work through it.

The night owl has night vision

Tuesday, February 14th, 2006

Cathy, Manolis and I have each noticed that Maria seems to see better in the dark than in the light. By “dark” I mean, for example, in the car while driving at night. If we hold something in front of her in a dimly lit room she sees it and grabs it immediately. In a normally lit room, it takes her a while to focus on it and she gropes randomly about until she happens to touch it. My guess is that her brain gets overwhelmed by all the other objects she can see in the background, and in the dark she can focus on one thing at a time.

There are a lot of skills that are coming along. She’s getting better and better at holding her own bottle. The PT saw her in the crawler yesterday for the first time in a long while and was shocked by how well Maria is doing. Maria’s biggest obstacle is *ahem* us. We are so quick to jump in and “help” that we don’t give her the chance to figure stuff out herself. We keep having to remind ourselves that it’s OK to let her struggle.

The dual-impairment specialist was talking to Cathy the other day and telling her all these things we need to be doing with Maria to help hone in on her subtle cues and learn Maria’s way of communicating. What she was saying made sense, but it’s another case of someone taking their tiny view of Maria and telling us we have to spend every moment on that particular aspect of it. Instead, we’ll add it to the list of the other few hundred things we are supposed to be doing every day and it will get occasional attention when we can.

Maria was running a bit of a fever yesterday. We’re hoping that it isn’t yet another cold.

Wide Pedicles and Night Owls

Tuesday, February 7th, 2006

Just when Maria seems to be feeling better and things seem to be improving, I get a letter from the neurosurgeon summarizing our visit on July 5!!!! 7 months later, and I thought I was a procrastinator…. It says things like “she was having some episodes of questionable decline in mental status” — which turned out to be teething… “continues to be followed by the neurologist for her neurological status and questionable seizures” — she had 1 confirmed seizure when she was 7 days old… Regarding her head, “the relative frontal narrowing is certainly stable” — we didn’t realize she had relative frontal narrowing. Then it gets real good “there was a suggestion on the shunt series (x-rays) that she may have some posterior elemental dysraphism … the neuro-radiologist and I feel as though her pedicles are a bit widened … she needs a lumbar MRI to ensure she doesn’t have any evidence of cord tethering”. What the hell does that all mean? I’m trying to get the lumbar MRI scheduled with the brain MRI and BAER, now scheduled for March 3. I wish this stuff didn’t flip me out…

And the night owl stuff, you ask? Maria has decided that she likes staying up past midnight. She likes to yell while staying up. A typical mother with a typical child would probably leave her be. I leave her for a while, but when she scrunches up her face, I wonder is it her shunt? Is it something serious? Is the antibiotic she’s on for her bout of pneumonia messing up her stomach? Or is she just trying to get our attention? It’s 9:30pm, she’s been yelling for almost 30 minutes. If she repeats last night, we have 3 more hours to go… Both her parents like to stay up late, so I guess I shouldn’t be surprised. Kalinichta! (good night in Greek)

BAER Postponed

Friday, February 3rd, 2006

The hospital called yesterday to confirm the BAER and MRI. I mentioned that, oh by the way, she was diagnosed with pneumonia and was still breathing pretty rough. Not surprisingly, they said this means they can’t give her anesthesia so the tests have been postponed for four weeks. We had hoped she would be better in time, but no such luck. Well, it gives for more weeks for the voodoo doctor to rewire her brain.

Maria’s feeling better even though she still sounds bad. We’re working on getting her to hold her bottle herself and she’s coming along. Once she dropped the bottle and picked it right back up. Plus I think she said “ubbbbbbb” when I said “up”. She did it five times in a row but, of course, hasn’t done it since. She just loves to tease us.