Eyes and Ears and Lungs, Oh My

I took Maria back to the eye doc today. If her eyes aren't a lot better by Sept 11, then he's going to recommend surgery (lancing the "zits"). Nice, huh? Fortunately, I caught her napping today and put lots of compresses (soaked in chamomile, as requested by her dad and ok'd by the doc) on both eyes for more than 30 minutes. (Couldn't tell any difference at all afterwards, kind of discouraging).

On a brighter note, we got the audiologist's report today, which says "Waves I-III were consistently present and repeatable. Wave V was present for only sporadic stimuli and was small in amplitude. For "click", Wave III was measured down to 30 dB bilaterally. Other results ranged from 4000 Hz, Wave III: 60 dB in left ear and 70 dB in right ear to 500 Hz, Wave V: 40 dB in left ear and 50 dB in right ear. For unmasked bone conduction: no synchronous neural response was recorded at the ouput limits of the equipment (35 dB). In summary, ABR results showed continued slight improvement in synchrony of the auditory pathway for both ears when compared to Maria's March 2006 ABR."

In comparison, Maria's 1st ABR in January 2005 (where they concluded that she was basically deaf) said: "No repeatable Wave V at 90 dB in either ear at 500 Hz to 4000 Hz, same for "click". March 2006 results: 500 Hz, Wave V: 60 dB right ear and 75 dB left ear. Granted, I don't know crap about this stuff, but she was at 60/75 and now she's at 40/50 decibels -- that sounds pretty freakin' good to me.

Interpretation: I think "improved synchrony" means that there appears to be a repeatable pattern of Maria responding to sounds, and it's at softer levels. It also appears that she hears better out of her right ear, but of course being the mom, I don't notice which is better. I still don't get the Hz stuff. And I have no idea what the unmasked bone conduction results mean.

Maria's cough doesn't seem to be getting better. It appears that she gave the cold to her dad, but hasn't managed to infect the rest of us, yet. And so on it goes ... it's not just one thing, it's the other and the other and and and........ Today I managed to do the warm compresses once (not the desired 4 times), eye ointment once (but will give her 2nd dose when I go to bed), the stander, and 3 meals (breakfast at 11:30am); plus she got one or two naps and I got a little bit of work done; but she only drank 21 oz fluids, no hearing aids, no Baby Einstein, no music, no crawler or resonance board or self-feeding or Nasonex or sign language or open cup or bath or anything else resembling therapy... Granted, I got about 3 hrs sleep last night and took her to the doc today and was supposed to be working, but sometimes I wonder if some of the therapists and docs realize that. Thank goodness for Sue and Uncle Andy and their success in doing so much more than ma and pa.

Speaking of pa, he's still "acting" in Kingdom. This time he was in some scene with Hummers and SUVs. Tomorrow they're going to be doing some night shooting. Can't wait to see the movie!

Another little bug

Maria's recovering from what was apparently some 24-hour bug. She had a fever and was throwing up a LOT. She's better now, just very sleepy and still not eating very well.

While she was napping today I was watching a video on the computer and suddenly someone yelled. Maria jerked awake, which was the only time I've ever seen her wake to a noise. It's very encouraging how much her hearing is improving.

Timing is Everything

And so of course right when I'm going to be out of town for a few days, Maria doesn't seem to be feeling very good--she threw up all night (it seemed) Friday night and slept all day Saturday and today is coughing. China Cat doesn't seem to be doing so well either--she threw up all day yesterday when I was gone to a play, leaving Manolis to clean it all up. It's making it much more difficult to think about getting on that plane...

So ya wanna hear something funny? You know that "some actor" Andy mentioned that Manolis got to "act" with? It was Jamie Foxx. Some actor, indeed. He gets to work on the movie again this week--maybe he'll get to have a fight with Colin Farrell...

AFOs and movie stars

The PT has decided that it is time to put Maria in AFOs (ankle braces). She will wear them only at night to correct her foot position to prevent larger problems once she starts to walk. We had hoped to avoid them but since she's not close to walking yet, it's time. She doesn't even show the interest in standing that she used to. Then again, she seems to be trying to pull herself up on furniture and people's clothes, so it's hard to say.

She had her latest BAER a couple of days ago and it shows more improvement in her hearing. There isn't as much improvement as the last one, but any progress is good news. I'll give more detail once we get the full report.

Maria's eyes have improved a tiny bit but not much. Cathy moved up the appointment with the eye doctor to next Thursday. Cathy noticed Maria's gums are very swollen (presumably from her two-year molars) so that is another part of why she's been fairly cranky lately.

In other news, Manolis (Maria's dad) is going to be a superstar. He got a job as an extra on a movie being filmed in Mesa. He plays a soldier and was in a scene where one of the actors handed him something and he saluted back, so it's practically a starring role ;)

More pictures

Well I FINALLY got the new pictures up on the site. I would particularly like to draw your attention to this picture and the story posted below it. I may be a dangerously incompetent caregiver, but at least I admit it. And provide photographic evidence.

A little update

Maria's eyes are a little better...maybe. She just HATES the warm compresses, which is supposed to be the primary way to treat this. Sometimes she'll calm down after a while and then she actually seems to enjoy it, practically falling asleep. Sometimes not.

Maria loves to touch peoples faces. In the past I've tried touching her face the same place she touches mine, but she's never seemed to make the connection. Monday I was doing it and it seemed to click with her. She got that "Hey, this is interesting" look on her face and kept moving her hand to different places on my face (usually she just jams her fingers in my mouth - or my eye - and leaves them there). The speech therapist was doing something similar but he was also naming the parts and she was just mesmerized by it.

I don't think we've mentioned that she's gotten good at picking up food (little cracker-type things) and getting them into her mouth. OK, only about one in four end up in her mouth, but that's a start!

You say chalazion, I say blepharitis

Hmmm, doesn't have the same ring as tomato/tomato...The eye doc gave us a piece of paper that has blepharitis (inflammation of the eyelid margins) and chalazion (a lump that fomrs in the eyelid as a result of blockage of an oil-producing gland in the upper or lower eyelid) on it. Guess it doesn't matter which it is, as long as it goes away. We've been applying the warm compresses (which she pretty much hates now) twice a day and putting in the TobraDex eye ointment (which she's not too crazy about and I suck at because her long eyelashes keep getting in the way of the ointment getting into her eye) 3 times a day. It's been 4 days since we've been to the eye doc and I'm not really seeing much improvement. She still has big, disgusting bumps inside her lower lids and who knows what inside her right upper eye lid, which is still swollen and red. Some days it seems like it just never ends, ya know? It's such a good thing that she's so good natured about life...

But the big news is that we had our appointment with immigration this morning and they approved Manolis for his permanent residence status, so he'll be getting his green card in the mail in 3 weeks! It was an easy interview. We took Maria with us. He told us some people are easier to interview than others. I think it was pretty obvious to him that we have a real marriage. He said they still catch many people trying to fake a marriage to get into this country -- which results in big fines and/or jail time. So Manolis is ok to work, travel, and live here now. The only thing we have to do is to file one final set of papers in May 2008 -- how am I ever going to remember that??!!

Another eye diagnosis

Maria went to the pediatrician again on Saturday (the fourth time since we got back) because her eyes looked the worst they had yet. He said just keep doing what we are doing.

She finally got in to the eye doctor today and he had a new diagnosis. He said it is something called chalazion which is basically acne of the eyelids. It's a chronic condition (or, as Cathy said, "yet another chronic condition") that will come and go her whole life. We are supposed to scrub her eyelids with baby shampoo every day, even after it goes away. He took her off the eyedrops and instead there is an ointment we are supposed to use in addition to warm compresses. We go back in a month and if it hasn't cleared up by then he will have to *gulp* lance the lumps, which means putting her to sleep.

This is a new eye doctor for Maria. He's going to be starting a study of children with both CVI and auditory neuropathy and Cathy wanted to get Maria in. One piece of good news is that he said CVI kids often have major vision improvements up to the age of five (I think we've heard three before) and lesser improvements well into their teens. We also talked about Maria's optic nerve atrophy. He said it is very unlikely to resolve itself though it has been known to happen. He didn't look at her optic nerves since that would have meant dilating her eyes which he didn't want to do with her current condition.

I suppose this is a good week for this to be happening because Maria's getting a vacation. All of her therapists are on vacation except the PT, and she did her quarterly report this visit. So Maria can take it easy this week and rest up.

Two year checkup

Maria had her 2-year well check this morning. Her eyes are still looking bad (swollen and goopy). Today she saw her regular pediatrician who said it's not an infection it's allergies. *BUT* we should still treat it as though it's an infection as well. So she's getting eyedrops for an infection, eyedrops for allergies, Claritin, and occasional Tylenol since her eyes are clearly very painful. She's normally such a drug-free child it's a little strange to be dumping this many chemicals into her.

This eye problem has persisted long enough that it is time to get her to an eye doctor. By coincidence she has an appointment next Thursday with a new ophthalmologist who is doing a study on kids with both cortical vision impairment and auditory neuropathy, so we can ask him about this allergy/infection/whatever.

The pediatrician is concerned that Maria hasn't shown any increase in weight or length in months. She said we need to try feeding her more. We are a little skeptical because she seems quite happy with the portions she's been getting, but we also realize it's the same amount she's been getting since she started on solid foods. So we'll try and see what happens.

We asked about the possibility of her adenoids being swollen. She has seemed to have trouble breathing through her nose for months now. There is no way to look at her adenoids (short of radiology) but the doctor said her tonsils are fine and it's very rare for adenoids to be swollen if tonsils are fine. She also said that her breathing would be much louder if she was having adenoid trouble. She says this kind of thing is common in low-tone kids. Everything sags and the nasal passages get constricted. As she starts to move around more it should go away.

Cathy asked yet again about that chronic skin "thing" Maria has. She has all these little bumps on her arms and legs that get better and worse from day to day. She's asked about it before and no one's been concerned, but it's still a little troubling. The pediatrician said it was...something that I can't remember the name of. The hair follicles get blocked or inflamed or something. It's not a disease, just an irritation, and a lot of people have it. It's worse in Maria because she's such a furry little monkey.

I should have a new batch of pictures up over the weekend.

The Eyes Have It

Maria's eyes were so bad Monday that the therapist from the Foundation for Blind Children "made" me call the doctor's office again. We got in to see yet another pediatrician who said, yes, it does look like an eye infection, and gave us some Vigamox, antibiotic eyedrops. Her right eye is now worse again, but the drops do seem to be helping a little. Poor little thing. I think her eyes are bothering her now because she's rubbing them more, winces sometimes when we try to get the goop off, and doesn't think the warm washcloth is quite as cute as it was 10 days ago or so. I also think the eyedrops sting a bit, so I put her in that awful position (laying on her back with her head in my crotch and her arms under my legs) to put the drops in. She smiles, but I think it might be more of a grimmace... Such a good sport, though.

Manoli got to take care of Maria alone today because the nanny's blood sugar was through the roof. I think Maria had a good time -- he read her lots of books, put a little chocolate syrup in her cereal and bananas, didn't make her change out of her jammies all day, did make her wear her hearing aids, put her in the stander, and kept her fed and liquidated. All good practice for when I go to Portland for a few days at the end of the month... He was looking forward to having her by himself for another day, but Sue's feeling better, so she'll be back tomorrow.

Snack tip: the Oreo crisps in the 100-calorie packs are great for little kids. They're chocolate, so they taste good, and they melt very easily. They're better than the 100-calorie chips ahoy, cheese nips, or nutter butters, which are all too hard. Always looking for those perfect snack foods, ya know?