Archive for September, 2006

Her last easy day for a while

Thursday, September 28th, 2006

Maria was in quite a playful mood this morning. She managed to snatch the glasses off my head and bite down on them before I could react. The lens popped out and got scratched by her teeth, but I got the lens back in it looks like no serious harm done. She’s lucky she’s cute 🙂 She also kept pulling the cat’s tail (hard!) and the cat got annoyed but wouldn’t move away. Cathy’s cats are pretty mellow though so we’re not (too) worried that they’ll retaliate when she gets “friendly” like that.

Recently Maria has started struggling to get to things that are out of her reach. That’s an important developmental milestone because it gives her incentive to crawl or walk. It also shows how much better her vision is getting. When we’re outside I’ve seen her reach out toward the trees on the other side of the yard.

The music therapy seems to be helping. She continues to respond very strongly to the guitar, looking around for it and rolling over to be near it. She is also getting good at strumming it and today she beat a drum several times. Her motions are getting more deliberate and less “randomly flail about until I touch something”. She’s also looser and we are better able to move her limbs, for example to clap her hands during music.

She has a big week coming up. Tomorrow she gets her ankle braces, Monday she has her pre-op visit and an EEG (not related to the surgery just an inconvenient coincidence), Tuesday she sees the wacky voodoo doctor (the Qi Gong guy), Wednesday her chalazion surgery, and Thursday the wacky voodoo doctor again. Some of her therapies will be cancelled but others won’t, so she’s got a pretty full dance card.

Startling Reaction

Monday, September 25th, 2006

In the category of good news/bad news, we’ve been noticing Maria reacting to things that startle her. The good news is that she reacts to things that startle her more. The bad news is that she reacts to things that startle her more. The latest was last night when I moved the mosquito net above her crib (the mobile keeps getting caught on the net), and accidentally knocked a very light wood picture of St Francis onto the pillow right next to her. It might have touched her, but nothing painful–as I said it’s very light. She jumped, then got this horrible look on her face, opened her mouth, and looked like she was going to start crying or let out a wail or something, but then she regained her composure (do 2-year olds do that?) and was ok. Andy saw what I imagine was the same face the other day, and I’ve heard Sue mention it as well.

Along similar lines, she’s been very ticklish lately, and again opens her mouth and you just know that any second now she’s going to laugh, but not yet… I’m sure some day it will come.

She’s been opening her mouth very wide the past few days, mostly while eating, I think. In general, she’s starting to open her mouth for the spoon so fortunately we don’t have to shove it in her mouth anymore (not as wicked as it sounds), so that’s pretty exciting; but in addition to that, sometimes she just opens it like she’s trying to figure out if she can fit an egg in her mouth (like my siblings did one day, long ago).

The other exciting thing Maria’s been doing is hugging tight. Although often accompanied by pulling hair, I still think it’s great.

Oh yea, and in the 2 days or so that we’ve stopped using the TobraDex (antibiotic ointment), her right eye has started to get crusty–maybe some sort of infection? So, I’m back to using the goop again. She was acting like it was bothering her before we stopped using it; almost like it was stinging. Hope it clears up before her surgery Oct 4. Her lower left eyelid is starting to get bad again and her right eyelids are so swollen they look like they’re going to pop.

We visited Manoli’s Greek friends at the restaurant today. They haven’t seen Maria in months, maybe almost a year?? I don’t think they quite know what to do, say, or make of her. She really took to Nick. Kept looking at him when he was talking (unusual) and was holding on to him when he held her (he doesn’t seem too put off by her).

See What Can Happen?

Tuesday, September 19th, 2006

Almost daily we talk about letting Maria do things on her own. “Leave her alone,” we say, even while messing with her. Sometimes we let her feed herself, we encourage her to hold her own bottle, but generally her mom or dad or uncle or nanny do most everything for her… So imagine my surprise…. At about 1am, and again at 3am, 3:15, 3:30, Maria was coughing. Finally I got up, made her some juice to wet her whistle, gave her a few glugs, then put the bottle in her crib so I could grab it when she started coughing again. So, as I said, imagine my surprise, when at about 4:30 or 5am I heard her gulping, gulping, gulping!! She rolled over, grabbed her bottle, and started drinking! So amazing and exciting! And isn’t that one of the great things about parenting a special kid–we celebrate and appreciate all her successes, whether big or tiny.

The other amazing thing Maria did was stand for Uncle Andy yesterday-a lot. He was holding her at the hips or waist and first she stood for about 5 minutes, then a little bit later she stood for 10-15 minutes! (He said her legs were so stiff, he thought she should use the stiffness for standing.)

And the mosquitoes are still loving her. First it was her feet, yesterday it was her legs. Huge welts that look like hives. I gave her a few doses of benedryl and it seemed to help. Fortunately they don’t seem to itch, but they look awful.

Attack of the bloodsuckers

Thursday, September 14th, 2006

Maria’s surgery has been scheduled for October 4, right before she goes on a cruise. Since the surgery will leave her with black eyes for several days, Cathy can enjoy the looks of her fellow cruisemates as they wonder if she beats her baby. She also has a pre-op visit with the doctor a couple of days before. Then just after the cruise Maria has her barium swallow.

Maria’s still feeling a little sick. Yet another recent problem is that she is being ravaged by mosquitos. She must have 6-8 bites on her left foot alone (she’s asleep right now so I can’t count to be sure). Manolis is worried about West Nile virus. They have put mosquito netting around her crib in hopes of keeping the bloodsuckers away.

Yet another, another recent problem is that Maria had an incident yesterday. While the PT was here Maria got suddenly pale (so pale she was yellow), clammy and stiff. A friend of the nanny, who is an RN, said that it sounded like a seizure. For a typical child it might get waved off, but since hydrocephalics are more prone to seizures, we have to take this one seriously. So Cathy has a call in to the neurologist to schedule an EEG.

Maria also has her IFSP (her treatment plan) meeting this month with the representative from the state. And it’s time to call about new hearing aid molds. And let’s not forget her orthotics appointment the 29th. She is a busy, busy girl.

Doctors, doctors everywhere

Monday, September 11th, 2006

Maria had her trip to the eye doctor this morning. Her chalazion isn’t improving much so he’s decided it’s time to lance the swellings. Since they have to put her to sleep it has to be scheduled as an outpatient procedure so it may be another 4-6 weeks before they do that. In the meantime we continue the compresses when Maria feels like allowing it in hopes she will have some kind of spontaneous remission so we can avoid surgery.

Then she saw the orthotics specialist for her AFOs (ankle braces). She got molds made of her feet, which was kind of interesting. They use this fiberglass-impregnated cloth that looks like an Ace bandage. When the cloth is moistened it starts to harden and is completely set in a few minutes. That gives them time to wrap it around her leg from knee to toe so it hardens in a perfect mold of her legs. Then they just cut it off with scissors. We forgot to bring the camera, but she had someone else in the office take a few pictures that she is going to email us. We go back the 29th for Maria to try on her new accoutrements and do some final fitting. She’ll wear them only at night and when she’s in the stander.

She also talked to us about, as Cathy put it, “another damn contraption”. This is something that fits across her hips and thighs and helps her to sit on the floor more easily. Right now she can (sometimes) sit on the floor unassisted, but only very hunched over and with the support of both arms. This could help her feel more comfortable straightening up and maybe even sitting without needing her hands for support. They have some we could try to see if it helps her. It was a little too much to look at them this time, but maybe next time or even at the post-AFO follow up visit.

The vision therapist had us try something interesting. Maria was sitting in her new chair (a very nice pink, fuzzy easy chair complete with ottoman) and the therapist put light weights on her thighs. It gave her some stability so that she could focus on her upper body. She became much more active with her arms in this more stable position.

I tried something new in her stander. The straps go across her knees, waist, and shoulders. I tried unhooking the shoulder straps to give her a little freedom. She loved moving around and experimenting with her position. She flopped forward only once and was able to lift herself back up. We will probably start doing that more routinely to give her more freedom to move in the stander.

Sick but improving

Friday, September 8th, 2006

Maria’s still got that persistent, phlegmy cough. She’s gotten both her dad and her Uncle Andy sick so far.

She continues to fight the warm compresses. We are glad she’s asserting her independence more, but she really needs this treatment for her eyes. Monday she goes back to the eye doctor and I’m fairly certain that he’s going to recommend lancing the swellings. Yuck. She has her orthotics appointment for her ankle braces the same day.

Her sitting is improving. We took her to a restaurant recently and she again did pretty well in a booster seat. She flops around a lot, but we finally realized that she’s just experimenting with body position.

She looks around for sounds more often than she used to, even without her hearing aids. She has some jingle bells that we wrap around her wrist that she likes to shake (and bite, but that goes without saying). She may be learning to understand a few words. When feeding her, she likes to suck her thumb, but if you say “Bite” she will take her thumb out to take a bite. She loves to pull people’s hair, but she’s starting to learn to let go when you say “Let go”.

There are a lot of other small improvements that escape me at the moment. She seems to be in one of the developmental jumps she gets now and then.

Eyes and Ears and Lungs, Oh My

Friday, September 1st, 2006

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!