Maria Rose

Maria’s still phlegmy but doesn’t have a fever. She does this “open my mouth until I gag on the phlegm” thing that’s a bit odd and icky.

Those red blotches are still there, ten days and counting. Cathy took her to the orthotics specialist who said she’d never seen them before. We are all still unsure whether the AFOs really caused them or not, but she said not to put the AFOs on again until they heal. Since they look worse if anything (they are now raised rather than flat) she may never wear them again! We aren’t even putting shoes on her at this point.

Cathy’s still trying to find time to get Maria her glasses. Cathy has a lot of stuff going on at work plus Maria’s schedule is always busy. Manolis leaves Tuesday for five months, and that’s not helping anything.

Maria’s still trying to stand and walk, though she was less energetic on Thursday. She also took a four-hour nap (the first nap she’s taken on my shift for WEEKS) so she was probably feeling pretty puny that day.

The feeding therapist is completely shocked by Maria’s progress. We give Maria whole peas now and she can handle chewing them. Cathy was giving her pieces of baked fish the other night, and Maria did just fine. Maria seems to like the firmness, and she can’t cheat by sucking on them like she can some of the crunchy stuff we give her. She still gags now and then but does OK.

We now have a “prescription” for water. Maria, as you probably know, isn’t allowed any liquids that haven’t been thickened. The feeding therapist has graciously allowed us to give Maria up to one ounce of pure, unthickened water a spoonful at a time. It seems a little silly, but it will help her deal with thinner liquids. With her swallow study coming up in June, we want her to do well.

She is getting better with the straw. On Thursday I had her sitting in front of her Baby Einstein. She had her straw cup cradled in her arm and she’d watch for a while, then bend down and take a sip from the straw, then go back to watching. She did this over and over. Such a big girl!

Maria was sick today. She was feeling kind of bad last week, but the winds had kicked up so it might have been allergies. Today she had a fever and was throwing up so it’s definitely “sick”. She was happy and energetic though so couldn’t have been too sick.

She just can’t sit still lately! She’s really working on standing and walking. We mentioned the possibility of a walker to the PT and I figured she’d say Maria wasn’t ready, but she thought it would be a good idea. As Cathy pointed out, Maria might walk before she can sit!

Cathy and the PT worked on ordering Maria’s specialized stroller. She has decided on the Swifty since it gives Maria the features she needs without looking all wheelchair-ish. It’s light and collapsible, but fully crash tested for school buses (which the school requires).

Maria and Cathy are scheduled to sit on on a preschool class to get an idea how they handle special needs kids. It’s set up for the 14th I believe.

There’s kind of an odd thing going on with her feet. A week ago I put on Maria’s AFOs and they kept slipping so I tightened them more and more. Well she ended up with red marks on her feet that are still there today! They are red blotches almost like birth marks, similar to the blotchiness she gets when she gets mosquito bites. I can’t imagine the AFOs did them but they are exactly where the straps were. Maybe she had mosquito bites and the straps irritated them, but we aren’t sure. Since then, we’ve all been afraid to use them again.

You’ll note that we now have pictures of Maria in the header!  They are random and will regenerate every time you refresh the page.  I did this with the Random File WordPress plugin and a little help from NSLog(); to keep the code XHTML 1.0 compliant by adding height and width parameters.

Maria seems to be getting more aware of people coming and going. I mentioned the wave, and she’s sort of waved before. It occured to me that the reason she is inconsistent is that WE are inconsistent. We should start waving hi and bye more often to her.

Another example was at music therapy. The therapist always finishes with the goodbye song, and this time Maria got VERY cranky when she sang it. Then as we walked her to the door, Maria refused to look at her. I’ve seen her do that with other people who are leaving.

She is suddenly show a lot of interest in walking. I can’t get her to understand that she needs to learn to stand before she can walk She tries to walk if we hold her up, but gets confused. She’ll put one foot forward and stop. Then she’ll try and put the same foot forward again or lift both feet. It’s hard to guide her since we’d need about four hands.

One thing she was doing Thursday is climbing me. I’d hold her hands and she’d climb up my stomach and chest like a stairway.

Cathy got Maria this duck which quacks “Peter Cottontail” as he dances and flaps his beak. Maria was pretty indifferent to it at first but has gotten interested. She used to grab his wing to activate him (one of her other toys is activated by squeezing his hand) but has learned to grab his foot instead. Today while he was singing, Maria was gazing intently at his face…then started moving her lips along with his! She did twice more when I’d reactivate him. It was very funny.

Before you ask, no I didn’t get it on video. I considered it, but if I put the duck close enough that it would be clear what was happening, Maria couldn’t focus on him well enough and stopped doing it.

When the vision therapist arrived, Maria raised her hand in what looked an awful lot like a wave. She has sort of waved at people before, but until she does it consistently I’m reluctant to call it real.

Cathy filled out Maria’s skill evaluation for preschool and that was a bit depressing. It is a list if increasingly difficult skills broken out into sections. So the speech section might have a couple of dozen skills such as “makes any kind of vocalization”, “uses crude sounds (ba-ba for bottle)”, “uses single words”, and “uses full sentences”. You mark always, sometimes, or never and when you mark 4 nevers in a row, you skip to the next section. Some sections she scored quite poorly. We know her limitations, but it’s no fun to have your nose rubbed in it.

Maria had an eye doctor appointment yesterday. He said her vision is noticeably better and she is tracking objects slowly. She got her prescription for glasses but those will have to wait a bit since Cathy’s leaving town next week.

Recently, Cathy noticed this…thing…on Maria’s eyeball. It’s kind of like a patch of roughness on the border between the iris and the white. You can’t really even see it unless the light is reflecting off of it. She pointed it out to the doctor and he said it is phlyctenulosis (pronounced flick-ten-u-LOW-sis). According to Stedman’s Medical Dictionary, that’s “A nodular hypersensitive disease of the corneal and conjunctival epithelium of the eye caused by an endogenous toxin”. OK, that’s not much help. Basically, the blepharitis and/or chalazion released toxins onto the surface of her eyeball. She had a hypersensitivity reaction, almost like an allergic reaction, and got this little spot of inflammation. If left untreated it can create scarring and blindness. Oh, goody.

So she’s getting erythromycin ointment to see if that clears it up. Plus we need to get back to cleaning her eyelids. Sue is the only one who does that consistently. As Cathy says over and over, “What would we do without Sue?”.

The wind here has kicked up a lot of dust and Maria’s sinuses are obviously bothering her. She’s been stuffy and cranky. I noticed that she will sniff up the snot which, while icky, shows an awareness of it and a knowledge of what to do about it so it’s another cognitive step. Before she would just…ooze. She’s also learned to clear her throat, though she started doing that a few months back.

Maria’s really been getting into supported standing lately. Her biggest problem seems to be balance, and she has trouble making her muscles do what she wants. She requires less support as time goes on, sometimes just a finger to hold on to. She still arches back sometimes, which really throws her off.

Her feet have been in a better position lately. She had been holding them flat for a while after she started her AFOs, but then she was standing on her tip-toes more, which is what the AFOs are supposed to be correcting for. Eventually, we realized that we weren’t tightening them enough so her heels were coming up when she slept, thus reinforcing the bad position. We’ve been putting them on more securely lately, and that seems to have helped.

She got her first potty a few days ago! We know she’s not ready for true potty training yet since she can’t sit up on her own, but we figure it’s a start. She makes her pooping noise so we always have warning so we can zip off her diaper and plop her down, and since she still has constipation problems even with the poop goop we thought it might be a more comfortable position for her.

For anyone who’s interested, I found a recipe for poop goop online. It has helped her, though she still occasionally has problems.

A technical note for other bloggers out there. The blog got hit by the spam monster recently, with over 70 spam comments being posted in a half hour! Luckily, I still had comment moderation set up so I just got spammed with moderation emails but nothing showed up on the blog itself. I installed Akismet and Protect Web Form (a CAPTCHA plugin) which should solve that problem. I’ve had no spam since.

Maria had another big jump in abilities the past week or two. We saw her chiropractor for another Qigong treatment a week or two ago…coincidence? Who knows and who cares, but still…intriguing. One of Maria’s recent (March) goals from her occupational therapist was to hold her bottle for 3 minutes. She wrote that Maria “refuses to hold her bottle for her mom.” A few short weeks later, I often put Maria in my bed in the morning, give her a bottle, then get in the shower. When I’m done, so is she! All of a sudden, Maria’s holding her own bottle almost everytime for pretty much the entire bottle. It practically happened overnight–just like when she started drinking out of a bottle on her 1st birthday, when she hadn’t touched it in about 5 months. She’s also getting really good at finding her bottle when she drops it.

Andy’s been working with Maria to drink through a straw. The feeding therapist says it’s an important skill, more important/ advanced than drinking with a sippy cup (that’s my recollection of what she said, anyway). She wouldn’t use a straw for me, so I didn’t try it very often. Now, again, all of a sudden, she drinks through a straw like she’s a teenager. She’s still much more effective with Uncle Andy–with me she’ll drink for what seems like half an hour resulting in 1-2 oz less liquid, but so what, she’s doing it!

She’s also made a jump in the skill of feeding herself little crackers and Gerber stars. She frequently gets it into her mouth 1st try. She seems to quite enjoy it also. We got her a thing that looks like a pacifier with a net on it. It’s used to put food in so she can chew and suck on it w/o choking. Andy put banana then grapes in it for her one day, I put grapes in it the next day and she immediately grabbed it and put it in her mouth!

Friday we went to Farm Day. It’s at a small privately owned farm and is sponsored by the Foundation for Blind Children. Maria pet a baby goat, bunny, chick, and big sheep. She liked the sheep the best. After I showed her how to pet the sheep, Maria leaned her whole body forward and pet it with both hands! I think she liked its freshly sheared feel. She thought the baby goat was Kijana until I had her feel its tiny horn buds. That puzzled her!

The last 2 nights she’s slept with me. Not sure what’s going on, but tonight I think I’ll just let her fuss and stay in her crib. I don’t want her to develop a bad habit. She’s done so well with sleep, I’m not sure what’s up. Maybe my mom is visiting her and keeping her awake… Last night, she stayed awake very late, then finally went to sleep after I gave her Tylenol, so maybe she’s getting headaches??

Today is Easter. Andy’s coming over for a simple ham, zucchini, and potato dinner with a HUGE tiramisu for dessert that Sue gave us. Maybe next year we’ll color eggs or maybe I’ll get Maria a miniature horse!! It’d be better than a bunny!

Tuesday was our meeting with the public schools for Maria’s transition from early intervention (0-3 yrs) to preschool (3 yrs+). Yup, after Maria turns 3, the school takes over, gulp. It was a very large group!! Besides me, Andy, Maria, and Sue, we also had Maria’s physical therapist, early intervention/visual therapist; reps from DDD (state), Foundation for Blind Children preschool, and AZ Schools for the Deaf and Blind; school therapists, including physical, occupational, speech, hearing, and vision; school psychologist, and director of special ed for preschool. Or something close to that. The transition book I did was a hit. It was therapy for me to write and pick photos. I made extra copies and will give them to her therapists who weren’t there. Everyone was nice; Maria was a big hit, of course. She looked cute in her new outfit from Sue and she was very well-behaved. They didn’t even flinch when she did her poopy sound.

Sounds like there will be about 15 kids per class; their goal is 50:50 (special:typical kids), but this next year they’ll have only about 4 or 5 typical kids. The special kids are integrated into every activity. They work hard to keep them at the same height– Maria won’t be sitting high up in a specialized stroller, while the other kids are sitting low on the floor, for example. They said they don’t keep the kids in the strollers too much unless they have to (not sure how that’s going to work since she can’t sit independently, but I’m sure they know what they’re doing). I’m going to visit a couple classes at the public school and at the Foundation. Maria can come with. This was supposed to be an info meeting where they gave us info, but it was mostly us telling them about Maria. I didn’t feel completely free to ask a lot of questions, but that will come at future meetings–sounds like there will be several more. The team is coming to our house May 15 to evaluate Maria. That’s going to be a little rough. We see how much Maria’s progressed, and they see how she is compared to other kids her age, which I know they have to do, but it’s hard to listen to what they have to say…

I felt ok at the meeting, mostly, but I am going to be a blubbering idiot when I take her to school the first day or five. At least I’m not the only one. I heard some good stories about other mothers, so I know I’m not alone. It’ll be great for Maria to be around other kids, and not to be so micro-managed all the time, and it is only 2.5 hrs/day for 3 or 4 days/week, but it’s still going to be quite difficult to get used to.

Maria’s been very independent with holding her own bottle. She’s also been doing great with the straw sippy cups (for Uncle Andy and Sue Sue, that is). She’s been reaching out to us with both hands, turning around to look at us when we walk in the room, out of the room, etc. Today she held her hand up to the screen door w/o a prompt from me to say bye-bye to Sue.

And the laughter part–Sue told me that Clint (speech therapist) actually made Maria laugh out loud today!! She’s come close, she opens her mouth and almost emits a noise, but hardly ever more than a tiny squeak. When Sue imitated it to me, it sounded like a seal, but whatever. Wouldn’t it be great if she started LOL??? (shouldn’t it be L’ingOL?) Lots of improvements lately. She did see the chiropracter this weekend for the first time in about 6 months. Coincidence??