Archive for September, 2005

Interesting week

Friday, September 30th, 2005

Maria had a couple of interesting visits this week.

Tuesday she saw her pediatrician for routine immunizations. She still thinks Maria needs ankle braces since she tends to point her toes rather than keeping her ankles bent. Her therapists think it’s way to early for that and that once she starts walking her feet will be fine, and we’re inclined to agree. On the growth chart, she’s showing at the 50th percentile for weight, the 10th for length, and the 3rd for head circumference. It’s actually pretty funny that a hydrocephalus baby has a small head. She’s not concerned as long as Maria doesn’t drop off the chart, though she wants to see her back in two months to be sure.

She had her newborn evaluation on Thursday. As I understand it, this is some program where they follow premature infants from the NICU to see how the develop. Interesting to note that this therapist measured her and showed a couple of tricks to get her true length, since she tends to bend her knees. She got a couple of inches longer than the pediatrician’s nurse did, which puts her at the 75th percentile! Quite a difference for a fairly small measurement error.

Anyhow, she was very happy with how much Maria has progressed in the six months since she’s seen her. However, she roughly estimated Maria’s gross motor skills in the 13-20 week range. Now that’s kind of depressing for a fifteen-month-old. But the last time she was evaluated (six months ago) she wasn’t even measurable. And that progress has almost all been made in the last couple of months, so although she’s behind she’s gaining quickly.

Another issue that has come up from a couple of the therapists is to start Maria in a stander. This is a piece of equipment that holds her in a standing position so that she gets used to putting weight on her legs with the ultimate goal that she will be able to stand and walk unassisted. Sounds great…until you get a look at them. One type looks like a tiny little coffin, and the other…well, you remember that scene from “Silence of the Lambs” where they wheel out Hannible Lecter all bound up? It looks kind of like that, but without the face mask. Then again, with all those teeth she’s got, maybe we should ask for the face mask too 🙂 The vision therapist says they have some in storage at the School for the Blind so Cathy can try it out for a while and she can see if it helps before shelling out anywhere from $800-$2000 for one.

Oh, the pediatrician also made an interesting comment about the hearing aids. We’ve long felt that they do now good. The problem is that the pediatrician thinks that no one is ever going to tell us to stop using them. It’s sort of like the feeding tube; everyone was quick to tell us to shove it in, but no one wanted the responsibility of making the decision to take it out. We’re trying to be open minded about the hearing aids, and we really try and keep them in her tiny little ears, but they obviously don’t help. But if Cathy goes to the otoneurologist (ear doctor) about it, he’s just going to say we should turn them up. Since her hearing has been noticeably improving over the last few months, I suspect at some point we’ll just give up and stop using them.

Teeth are better

Tuesday, September 27th, 2005

Maria’s teeth seem to be feeling better. Three of the molars have broken through, but one stubbornly refuses to get it over with. She fusses less now, though she’s still drinking rather slowly. She continue to eat well, and Cathy is making her food pretty chunky now that she has some chewing surfaces. Maria adapted to the chunkier food quite quickly. Her therapists continue to marvel at her progress in how she holds her body. She’s gotten very good at grabbing a toy while she is looking at it; she used to look at it, then look away before reaching out for it, which is a classic sign of cortical vision impariment. She loves to play with her feet, though she needs a little help finding them. But as soon as her hand gets close to her feet, she gets this big grin. We do the baby sign language thing with her, and we think she’s started to understand “milk” and “eat”. Cathy thinks Maria even made the milk sign the other day. She definitely continues to make slow progress, and we just need to remember to emphasize the word “progress” rather than the word “slow”.

Yes, we know it’s been a long time since we’ve posted pictures. We’re trying to find time to snap a few more, but she’s still such a high maintenance girl we tend to forget. Patience 🙂


Tuesday, September 20th, 2005

Maria not only has 2 molars coming in, she actually has 4 molars coming in!! She also has a bit of a cold. She’s a little cranky, but not as bad as I would be… Worst thing is that neither Motrin nor Tylenol seem to be doing much and she’s been gagging and choking worse on them with every dose. I may go back to the baby version, which is more expensive but much more concentrated. She’s still eating pretty well, her drinking has suffered a bit, but she’s still ok, and her sleep hasn’t been too bad. Such a good baby!

Yesterday we updated her Indvidual Family Service Plan (IFSP), so we had a houseful — of course Mom, Dad, Maria, and Uncle Andy were here, plus the physical therapist, hearing therapist, parent advisor from AZ Schools for the Deaf and Blind, and the state (Division of Developmental Disabilities or DDD) person, who is responsible for filling out the plan. We saw what goals Maria has met in the last 6 months and what new goals we have for her. I keep having to remind myself how far she’s come, how much she’s progressing, etc etc, instead of dwelling on the fact that she can’t sit unassisted yet, she may have to get a contraption to help her stand because she’s not bearing any weight on her legs, and on and on.

I think probably the highlight of my day was when the parent advisor actually admitted that I was right about how much Maria can hear. She has been rather condescending and acting like I’m just another parent in denial. Now even she’s puzzled by Maria. She has a call into the audiologist, the very experienced one who doesn’t know what Maria’s last hearing test results mean, and he hasn’t called her back.

Next week is another evaluation of her progress by someone at Phoenix Children’s Hospital. She’s very nice, but I always get rather depressed when reading her reports. I’m just hoping that we’re getting all this nonsense out of the way while Maria won’t retain any of the memories and one day we’ll lead a more normal life…

Only a few more weeks until we traipse (sp?) off to Vegas Baby to do our Drive-Through Wedding in a limo. Pretty exciting stuff!

Oh yea, that Pediasure the GI doc wants Maria on, well some mothers call it Baby Crack because the babies love it so much. Why do they love it so much? The 2nd ingredient is “sugar (sucrose)”, and the 3rd is “corn maltodexitrin” – another form of sugar maybe? The 1st ingredient? Water. No way would I give it to her full strength; I’m mixing it either half, 1/3, or 1/4 with cow / soy milk. It’s getting so complicated I have to write it down whenever I make it.

More teeth, less thickener

Friday, September 9th, 2005

Monday we noticed that Maria’s cutting her first molar (upper right), then yesterday I realized she’s cutting a second one right below it. So she’s been quite cranky this week. Teething tablets and Motrin don’t seem to help at all.

Cathy is adding less and less thickener to her milk and nearly has her down to nectar consistency. Maria’s adapting to the change, though she’s started to dribble more when she drinks.

Gastro Schmastro

Saturday, September 3rd, 2005

Today we went to see the gastroenterologist (GI) and the nutritionist (they work together). I was assuming (as was Andy, which is why he didn’t come) that since yesterday’s barium swallow went so well that the GI guy would be happy and dismiss us with a wave and a smile. Ha! This is the guy who at first wasn’t in a rush to put a G-tube in her stomach, but then got a bug up his butt that she needed one and won’t get off it. If you recall, we saw him a month ago and he said it was basically a miracle that Maria was drinking the bottle again and he wanted her to get a barium swallow because he’s sure she’s aspirating and if she is he wants to put in a G-tube, blahblahblah.

When we went in, they weighed her and she weighed 20 lb 14 oz and is 29.5 inches long. She’s lost almost 3 pounds since her birthday 2 1/2 months ago (remembering this is on different scales and naked vs with diaper), and almost a pound since we saw the GI guy last, so she’s now in the perfect height-weight range. That sounds ok, right? He says now he fears she’s in a weight free-fall and needs more calories or else we’re going to have to go back to a feeding tube, probably in the stomach not the nose because we don’t want to have to mess with the one in the nose. I got the impression he thinks she’s eating/drinking as much as she can and is still losing weight.

So, I tried to explain that she eats and drinks beautifully and would eat/drink more, but I’ve been feeding her the same amount for several months because people (mostly doctors) keep telling me how FAT she is. And poor Manolis is there hearing “feeding tube” and understandably is getting worried. Meanwhile, I’m sitting there trying hard not to either laugh or say “You are so full of shit!”. They want me to start feeding her Pediasure, which is a formula with more calories than cow or soy milk. Fine. He also cautioned me on thinning her liquids too fast (duh), and that I shouldn’t give her chunky food because she could choke (duh), and he wants to see her in 2 months. Whatever.

It just cracks me up that the doctors can’t be happy with her progress and improvements, while the therapists are thrilled with how she’s doing w/o being unreasonably optomistic. What these recent doc appointments have done is make me realize how well I know my daughter and what a damn fine job I’m doing (and how full of crap they are). So, another pretty good day. Chalk another one up for Maria!!!

I can’t be too smug, however, considering what’s going on in the Gulf states. I can’t stop watching the news coverage, and I can’t stop thinking how it would be if it was us 14 months ago with Maria in the NICU (newborn intensive care) and no food no water no electricity….. At least I could have fed her (and some of the other babies too, for that matter). Anyway, it’s just awful, that’s all I’ll say or I’ll go on another rant…

Barium Test

Thursday, September 1st, 2005

Maria had another barium swallow today. In this test, she swallows a liquid with barium in it, which is opaque to x-rays. The use real-time x-rays to watch how the liquid moves through as she swallows to be sure none of it goes into her lungs (aspiration).

As most of you probably know, Maria has a history of aspiration and as a result has to have all of her liquids thickened with a commercial thickener called Simply Thick. The three levels of thickness, from thinnest to thickest, are nectar, honey, and pudding. With Maria’s problems they wanted her on pudding, but that has to be spoon fed which is just freaking ridiculous. So she was on honey for a while, but over time has been on something less than honey but more than nectar.

Her gastroenterologist had said that if this test showed she was aspirating, she was going to get a G-tube (that’s where they cut an incision into her abdomen and put a feeding tube directly into her stomach). Now since Maria’s been drinking just fine from a bottle for two months now, Cathy and I felt that was completely absurd. We understood the possibility of a G-tube before when she was getting all her milk from the tube in her nose, but to do that to a baby who’s drinking just fine just boggles the mind.

Despite the fact that Cathy wasn’t about to let them slice into her daughter without a really good reason, we really just wanted to test to go well so we could say “nyah nyah” to the doctor. Hey, we may be immature, but at least we admit it.

The problem is that over the last couple of weeks, Maria has started to breathe rough after drinking and that could be a sign of aspiration. However, we also noticed that this roughness seemed to be in her throat rather than her lungs which implied that it wasn’t aspiration but something else.

So we headed into the test, fingers crossed, just hoping she wouldn’t aspirate on honey-consistency liquids.

Well, the miracle baby made fools of us all. They didn’t even try honey, but went straight to nectar (thinner than honey). Not only did she drink nectar without aspirating, but she drank thin (milk-like) and ultrathin (water-like) liquids, and didn’t aspirate them either! That’s phenomenal.

However, she is “pooling”. That means that some of the liquid pools in hollows in her throat when she swallows and doesn’t go into her stomach right away. That liquid can, in turn, drain into the lungs so there is still risk of aspiration. But she clears the pooling on her own, so we just need to slow down when we give her liquids and give her a few breaks to let her clear things out. Plus, since she’s been drinking thick liquids for months now, her throat just isn’t used to this thin stuff and she needs to learn how to swallow it right.

The recommendation is not only does she NOT need a G-tube (though we still have to see the gastroenterologist tomorrow for it to be official), but they said we should drop down to nectar consistancy and do another barium test in 3 months. What we will actually do is try her on nectar, see how she does for a few weeks, then start thinning it even more (under the supervision of her speech therapist).

So Maria is, as usual, not only improving, but improving faster than any of us could have predicted.